Confederated tribes of Warm springs

Final Report

March 2012

Coordinating cancer care and outreach screening with Native Communities

Our Mission

Thank You. The Northwest Tribal Cancer Navigator Program would like to thank all of the tribal members who have contributed to our understanding of Patient Navigation in Indian Country; past and current Navigators; the Tribes; Portland Area Indian Health Service and Oregon Health & Science University staff who have supported the project; current and past directors; and the staff at the National Cancer Institute, as well as NOVA Research Company

This project was funded by

The National Cancer Institute

Center to Reduce Cancer Health Disparities

Grant Number U01 CA116925-01

Report prepared by

The Northwest Portland Area Indian Health Board

Victoria Warren-Mears, PhD, RD, LD

Jenine Dankovchik, BSc • Meena Patil, MBBS, MPH

Megan Cahn, BSc, MPH • Matthew Town, MPH

Rochelle Fu, PhD • Carol Grimes, MPH

Victoria Warren-Mears, PhD, RD, LD

Director, Northwest Tribal Epidemiology Center

Northwest Portland Area Indian Health Board

2121 SW Broadway, Suite 300

Portland, OR 97201

(503) 228-4185

(503) 228-8182 FAX

www.npaihb.orgFunding

For additional information

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Funding

A message from the Program TeamDear Friends,

We owe a debt of gratitude to the huge cast of people who made the Northwest Tribal Cancer Navigator Program possible.

First and foremost, the patients who shared their stories and our amazing team of Navigators who regularly went beyond the call of duty and changed lives: Mary Loy, Jasen Henderson, Leah Hardy, Tula Galloway, Chase Mickelson, Sandra Hahn, Lin Rasar and Laura Allen.

At the Navigation clinics, we would not have been able to carry out this project without the ongoing support from administrators, nurses and clinical staff who championed the project, brought it to their communities and supported the Navigators.

At Grand Ronde Health & Wellness Center, we thank: Michael Watkins, Mark Johnston, Allyson Le Catsas, Kim Rogers, Nancy Karatzas, Nancy Renfro, Diane Pratt, Hal Mitchell, and Jennifer Leggett.

At Not-Tsoo Gah-Nee Indian Health Center, we thank: Angela Mendez, Alonzo Colby, Shirley Alvarez, Roanna Stump, Norma Wadsworth, and Roxanne Bunker.

At Siletz Community Health Clinic, we thank: Judy Muschamp, Lisa Taylor, DeAnna Pearl, Selena Rialtos, and Sunshine Keck

At Yellowhawk Tribal Health Center, we thank: Elwood Patawa, Tim Gilbert, Kelly Taylor, Charlie Picard, Shawna Gavin, The Confederated Tribes of the Umatilla Indian Reservation Health Commission Members, Eric Gabriel, Dorothy Jones, Michael Alperin, Susan Frey

At the Comparison clinics, we received so much help from administrators, IT staff, Clinical Application Coordinators and medical records staff who led us through the RPMS maze and pulled literally thousands of charts for us.

At Lummi Tribal Health Center, we thank: Barbara Juarez, Teresa Perret, Diane Tanner, and Roni Scates.

At Nimiipuu Health Clinic, we thank: Julia Davis-Wheeler, Samuel Penney, Rebecca Miles, Gary Greene, Larry Greene Jr, Robert Taylor, Joel Moffit, Brooklyn Baptiste, Shirley McCormack, Treva Ellenwood, Rachel Edwards, Susie Ellenwood, Merlin Gilham, Katrina Bentley, Sherri Lozon, Shannon Jackson, Harold Smith, Tina Bullock and Lois Niska.

At Roger Saux Health Center, we thank: Pearl Capoeman-Baller, Fawn Sharp, Sandra Wells-Kalama, Denise Walker, Julie Reed, Larissa Williams, Robert Young, and Maranda James

At Warm Springs Health and Wellness Center, we thank: Janice Clements, Ron Suppah, Aurolyn Stwyer, Charles Calica, Wilson Wewa, Carol Prevost, Michele Gemelas, Michele Miller, and Patricia Holiday.

We are also grateful to the staff at NCI’s Center To Reduce Cancer Health Disparities who supported a unique program in Tribal communities and our PNRP partners from whom we learned a great deal.

In accordance with Tribal Resolution #164-06, we are pleased to present the following report to you.

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ContentsBackground 1

What we know 3

Setting of the NTCNP 4

Participating Tribes 7

Methods 11

Objectives of the Study 13

Study Design 13

The Patient Navigator Model 14

Overview of Navigators 17

Databases 20

Qualitative Data 21

Informed Consent 21

Participant Survey 22

Analytical Methods 25Description of variables 25

Statistical Analysis 25

Results 27

At-a-Glance Data Summary 29

Enrollment and Demographics 30

Outcome Analysis 45Time from Initial Abnormal Finding to Definitive Diagnosis (T1) 45

Time from Initial Abnormal Finding to Definitive Diagnosis (T2) 48

Characteristics of Participant Encounters 49

Patient Satisfaction Survey 51Purpose 51

Description of Respondents 51

Qualitative Analysis 51

Quantitative Findings 67

Patient Survey Discussion 73

Discussion 75

Lessons Learned and Recommendations 77Balance Research and Community Needs 77

Importance of “Branding” 77

Challenges of Decentralization 77

Shared Burden Lessens Burn-Out 78

Need to Enroll Patients Early 79

Challenges to Enrolling Early 82

Navigator Case load 83

Community Outreach 83

Charting Lessons Learned 84

Positive Changes for Communities 89Improving Access to Care 89

Bringing Support to AI/AN Communities 89

Appointment Companion 89

Raising Awareness 90

Financial, Housing and Transportation Assistance 93

Discussion 94

Supplemental Materials 95Appendix A: Glossary 97

Appendix B: References 99

Appendix C: PNRP Partner Institutions 104

Appendix D: Study Participant Eligibility Criteria 105

Appendix E: Brief Summary of Variables in the NTCNP Data Dictionary 106

Appendix F: RPMS Search Queries Used 108

Appendix G: Navigator Hiring and Training 113

Appendix H: Navigator Databases 117

Appendix I: Participant Survey Instrument 120

Appendix J: Information Sheet 135

Appendix K: Patient Appointment Companion 137

Appendix L: Survivorship Care Plans 138

Appendix M: Resources - For Cancer Patients 141

Appendix I: Resources - Navigation and Support Groups 142

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Figures & TablesFigure 1: The Patient Navigator Model 14Figure 2: Modifications to the Patient Navigator Model 15Figure 3: Participant Totals by Clinic 31Figure 4: Participant Gender 32Figure 5: Participant Age 32Figure 6: Body Mass Index 33Figure 7: Co-Morbid Conditions 33Figure 8: Health care Coverage at Enrollment 34Figure 9: Disease Status at Enrollment 35Figure 10: Types of Abnormal Findings and Cancer 36Figure 11: Outcome of Cases Enrolled 37Figure 12: Severity of Abnormal Breast Findings 38Figure 13: Most Common Diagnostic Tests - Breast 39Figure 14: Breast Cancer Treatment 39Figure 15: Most Common Diagnostic Tests - Cervical 40Figure 16: Cervical Cancer and Pre-Cancer Treatment 40Figure 17: Most Common Diagnostic Tests - Colorectal 41Figure 18: Colorectal Cancer Treatment 41Figure 19: Most Common Diagnostic Tests - Prostate 42Figure 20: Prostate Cancer Treatment 42Figure 21: Tests yielding “Other” Abnormal Findings 43Figure 22: Treatments for Other Cancer Types 43Figure 23: Median Number of Days from Abnormal Finding to Diagnosis 44Figure 24: Number of Days from Diagnosis to Treatment Start 44Figure 25: Most Common Navigator Activities 49Figure 26: Encounter Length Among Navigated Participants 50Figure 27: Encounter Location 50Figure 28: Most Common Perceived Activities 67Figure 29: Most Effective Navigation Services 68Figure 30: Most Important Navigator Characteristics 69Figure 31: Satisfaction with Navigator Characteristics 69Figure 32: Quadrant Analysis of Importance and Satisfaction 70Figure 33: Overall Satisfaction with NTCNP 71Figure 34: Likelihood to Recommend 71Figure 35: Top Drivers of Participant Satisfaction 72

Table 1: Demographic Characteristics of Participants 30Table 2: Mean and Median of T1 and T2 in Days 45Table 3: Participants Obtaining Definitive Diagnosis in One Year 46Table 4: Factors Associated with Obtaining Diagnosis within One Year 47

Background

Part 1

2

What we know

For many cancer types, American Indians and Alaska Natives (AI/AN) experience worse outcomes and lower chances of survival than other racial/ethnic groups in the United States. Cancer is the third leading cause of death for AI/ANs of all ages, and the second leading cause of death for American Indians over the age of 45.(1)

The burden of cancer affects people of all races and ethnicities. However, cancer survival data reveal that AI/AN people have the poorest survival of any racial group for all cancer types combined and for eight of the ten leading types.(2) In the Northwest, the overall incidence of cancer is lower among the AI/AN population when compared to the non-Hispanic white population; despite this, the AI/AN cancer mortality rate is significantly higher than the rate for non-Hispanic whites, and AI/ANs in the Northwest have a lower proportion of early stage diagnoses for three major screenable cancer types (breast, cervical and colorectal). (67)

It is believed that part of the reason AI/ANs experience higher cancer morbidity and mortality is due to delays and obstacles in seeking and receiving cancer care. The lack of access to adequate cancer screening and treatment remain major causes of higher cancer morbidity and mortality in tribal communities. A variety of social, economic, and cultural barriers impede AI/AN patients’ ability to participate in screening, diagnosis, and treatment. (3) Funding limitations of Indian health care, and cultural, social and geographic barriers to cancer care are further challenges specific to tribal communities.

There have been significant advances in science and in understanding treatment of cancer. Yet, there are many people who do not sufficiently benefit from these research advances. This gap between what is known and what is delivered is a critical determinant in cancer health disparities and ultimately who is at risk.

One of the ideas attempting to fill this gap is to have a person work with patients to navigate the complex medical and financial systems, overcome barriers to care and assist in logistics. This idea was formalized and put into practice and is now referred to as the “Patient Navigation Model”.

While the Patient Navigator Model has been shown to be effective in reducing barriers to care in other underserved communities(4), it has not been widely implemented in urban and rural AI/AN communities. Thus, The Northwest Tribal Cancer Navigator Program (NTCNP) was created to implement the model in the Northwest in an attempt to determine its efficacy in reducing barriers to care, with the hope of improving clinical outcomes and the quality of life for tribal cancer patients in our communities.

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Setting of the NTCNP

Northwest Portland Area Indian Health Board

The NTCNP was managed by the Northwest Portland Area Indian Health Board (NPAIHB), a non-profit tribal organization that was founded in 1972. The NPAIHB serves the 43 federally recognized tribes of Idaho, Oregon and Washington.

History of Navigation in the Northwest

The President’s Cancer Panel was charged to monitor and evaluate the development and execution of the National Cancer Program and report to the President on barriers to Program implementation. Throughout 2000 and 2001, the Panel held a series of meetings exploring issues that affect the ability of communities to provide cancer care – including prevention, education, communication, detection, diagnosis, treatment, rehabilitation, and palliative and end-of-life care – to people in the diverse neighborhoods of the nation.

Yakama tribal elder Joe Jay Pinkham spoke before the Panel in February 2001 at a meeting held in Los Angeles, California. As a result of his experience, Mr. Pinkham invited the Panel to hold a meeting with the Yakama Nation in Toppenish, Washington to hear about the issues and barriers affecting cancer for AI/ANs in his community.

The full report of the Panel’s meeting can be found at

this linkor see #3 on the reference list

Based on the Panel’s Report and the voice of the Northwest Tribes, funds were made available to explore the Navigation Model in Indian Country. The National Cancer Institute, through

a collaborative agreement with the Portland Area Indian Health Service, pilot tested Navigation in two communities in the Northwest. The NPAIHB was selected to administer and oversee the program implementation and evaluation. Katrina Ramsey, Pilot Program Director, operated the Northwest Tribal Cancer Navigator Program from its conception in 2003 through 2006.

The full report of the Pilot Program can be found at

this linkor see #13 on the reference list

Because of the work done by the Pilot Program, the NPAIHB was awarded additional funding to expand the Pilot Program and conduct a more extensive evaluation of Navigation in Indian Country as one of the nine sites funded in the Patient Navigation Research Program (PNRP). Funding was provided to the NPAIHB from the Center to Reduce Cancer Health Disparities at the National Cancer Institute. This program is called the Northwest Tribal Cancer Navigator Program (NTCNP).

National Partners

The PNRP consisted of nine national programs which ran Navigator programs at different settings and serving different populations throughout the country (see Appendix C for a summary of these programs). The NTCNP was the only program in a rural setting and serving the AI/AN population specifically.

Indian Health Service

The Indian Health Service (IHS) is a federal agency within the US Department of Health and Human Services. It provides health care for all tribal members enrolled in one of the 550 plus federally recognized American Indian tribes or Alaska

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Native villages. IHS is not a health insurance program; it does not provide guaranteed services for a price, but rather offers limited services as funding allows. IHS has more in common with other federal programs such as Medicare or Medicaid. However, IHS services are available to any enrolled tribal member and eligible patients are not means tested.

There are no IHS hospitals in the Northwest, but most tribes have a clinic serving the population living on or near the reservation. There are also a small number of urban and school based facilities. Services available at these clinics are limited to outpatient care. Most have medical, dental, pharmacy, radiology, laboratory, community and behavioral health. Some specialty services such as podiatry or audiology may occasionally be available. Eligibility for services provided at the clinic is extended to any enrolled member of a federally recognized tribe, regardless of which tribe. This type of eligibility is referred to as “direct-care service eligibility”

Because there are no IHS hospitals in the Northwest, clinics must contract with outside providers for the majority of inpatient and speciality care. Funding for these Contract Health Services (CHS) is through the IHS budget, but CHS receives a limited allocation. It has been documented that the IHS is funded at less than 50% of the true need.(14) In some cases tribes are forced to limit CHS referrals to those with the greatest immediate need - to save a life or prevent severe impairment.

CHS eligibility is also restricted, usually to members of the tribe where the clinic is located. Enrolled members of other tribes can be seen at the clinic for direct-care service, but are not eligible for anything which requires a referral outside of the IHS. For most of the clinics this includes mammograms, colonoscopies, imaging tests, biopsies and other surgery, as well as all oncology treatment. These services are only available to members of the local tribe. Of course if the patient has private insurance, Medicare or

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Medicaid, speciality services can also be billed to those entities.

Thus it is the patients who are eligible for direct-care services only and who have no other type of coverage who have the greatest challenge in receiving screening, diagnosis or care for cancer.

Clinics within the Indian health system are generally classified as one of three types: those operated directly by the IHS, those operated by the tribe, and urban health clinics (collectively know as I/T/U). Tribally-managed clinics came to the forefront following the movement for tribal self-determination and are now the most common type of clinic in the Northwest. Since each tribe makes independent decisions about how to structure and manage health care for its people, each of the clinics operates quite differently.

It should be noted that the two eligibility categories described earlier (direct-care and CHS) exist at both clinics operated directly by the IHS and those operated by a tribe. Throughout this report we will use the term “direct-care service eligible” to refer to patients who are eligible for services provided within an Indian Health Program, either through a tribally-run or IHS-run facility. This term is being employed to draw the distinction between those who can only access care offered on-site at an I/T/U facility, and those who are eligible for care from outside providers,

through CHS. It should not be interpreted to mean only services provided at an IHS operated facility.

Project Management

The clinics participating in the NTCNP included one IHS operated clinic, six tribally operated clinics, and one unique model - a hybrid, managed jointly by the IHS and the Tribe (and accredited as such), the only of its kind in the country.

Navigators were stationed at the clinics and were usually a part of the nursing or community health departments. Within the NPAIHB the Principle Investigator, Project Director, Data Analyst and Project Specialist managed the research program.

Northwest Tribal Comprehensive Cancer Program

In addition to the clinic resources, Navigators had many community partners, notably the Northwest Tribal Cancer Control Program (NTCCP). This program is housed at the NPAIHB and provides patient education on cancer as well as coordinating cancer control activities such as health fairs and connecting the tribes with national and local cancer resources. Through working with the NTCCP, the Navigators quickly became familiar with the local resource networks and began to bring additional funding and services to the communities in which they worked.

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Participating Tribes

Confederated Tribes of Grand Ronde

Located in rural Oregon, about 60 miles southwest of Portland, the Grand Ronde Health & Wellness Center serves a population of about 3,300 people. The Confederated Tribes of Grand Ronde (CTGR) is a self-governance tribe and therefore manages its own comprehensive health care program serving Grand Ronde tribal members, their beneficiaries, other AI/ANs, Tribal employees and non-natives living in the community.

Unlike most other tribes, CTGR also use tribal funds to provide coverage beyond that covered by IHS. All tribal members are eligible for the benefits and the coverage is similar to that of a private health insurance plan. Since the clinic sees more than just Grand Ronde tribal members, some patients at the clinic are not eligible for this coverage; for example, non-native community members. Direct-care services are available to all AI/AN patients, as at any other I/T/U facility.

The clinic was opened in 1997 and underwent remodeling during the course of the NTCNP. It includes a medical, dental, behavioral health, optometry and pharmacy department as well as a high-complexity lab and digital x-ray. Pap tests, fecal occult blood tests (FOBT) and Prostate Specific Antigen (PSA) screening tests are available at the clinic. However, mammograms, colonoscopies and other diagnostic tests are handled at outside facilities. The nearest cancer centers are about 25 miles away in McMinville.

Confederated Tribes of Siletz Indians

Located near the Oregon coast, about 15 miles inland from the town of Newport, The Siletz Community Health Center serves over 3,000 Siletz Indian people and their dependents. Siletz is a self-governance Tribe and manages its own health care program.

Although the Tribe has recently completed a new

much larger clinic, during the NTCNP Navigators were housed in the old clinic which opened in 1991. It included lab services, but patients were referred out for mammograms, colonoscopies, and other diagnostic tests. The nearest hospitals are about 20 minutes drive in Newport, and the nearest cancer center is about 45 miles away in Corvallis, Oregon.

Confederated Tribes of the Umatilla Indian Reservation (CTUIR)

Located in eastern Oregon near the town of Pendleton, the Yellowhawk Tribal Health Center provides primary care to members of the CTUIR. The clinic is approximately 20 years old and since 1996 has been a Tribally governed facility. The patient population of about 5,000 has access to outpatient services including medical, dental, behavioral and community health as well as pharmacy and lab. As with the other clinics, mammograms and colonoscopies are referred out, although a mobile mammography unit is sometimes available providing mammograms on-site.

In the town of Pendleton (about 10 miles away) oncology services are available, but most patients drive 60 miles to Walla Walla, Washington or even 180 miles to Portland to reach a cancer center for more specialized care.

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Confederated Tribes of Warm Springs

Located in central Oregon about 100 miles southeast of Portland, the Warm Springs Health and Wellness Center is a direct service unit managed by the Indian Health Service and serves about 5,300 AI/AN patients in the service area.

The clinic offers medical, dental, pharmacy, lab, radiology, optometry, public health and other specialized services.

Warm Springs offers cervical and prostate cancer screening and fecal occult blood tests on-site while mammograms and colonoscopies are referred out. It was the only clinic in the NTCNP where colposcopies were done in-house. The nearest hospital is in Madras (14 miles) and other services are referred out to Redmond or Bend (50 miles). However, more complicated cases are often referred to Portland.

Lummi Nation

Located in northwest Washington state near the town of Bellingham, the Lummi Tribal Heath Center provides services to Lummi tribal members and other AI/AN patients in the area, totalling about 4,800 people. A self-governance tribe, Lummi manages clinic services including medical, dental, pharmacy, lab, community and behavioral health. In addition to the clinic, which was remodeled and expanded in 2002, the Tribe operates a wellness and fitness facility.

Patients are referred to nearby towns, most often Bellingham, for mammograms and colonoscopies as well as diagnostic tests and cancer treatment. It is not uncommon for patients to drive to Seattle, about 90 miles south, for specialized care, which poses a major hardship for some patients and can prevent them from getting the care they need (this holds true for all the Tribes in the study).

Quinault Indian Nation

The Roger Saux Health Center is in the town of Taholah, located on the Central Western coastline on the Olympic Peninsula in Washington state. The clinic serves Quinault tribal members and other AI/AN patients in the area, a population of about 3,000. There is also a remote health station in Queets, 50 miles north of Taholah.

The tribal health programs are managed by the Tribe under a self-governance compact and provide outpatient services in medical, dental, pharmacy and lab, community and behavioral health.

For mammograms, colonoscopies and other diagnostic testing there is a community hospital located about 50 miles south in the town of Gray’s Harbor. The nearest cancer center is about 90 miles away in Olympia, but many patients are sent to Seattle - 150 miles away - for more specialized treatment.

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Nez Perce

Located near the town of Lewiston, Idaho in northern Idaho, the Nimiipuu Health Clinic serves the Nez Perce Tribe as well as other AI/AN patients in the area. The clinic serves about 3,000 patients and is managed by the Tribe under a self-governance contract with the Indian Health Service.

The clinic provides medical outpatient services, dental, lab, community and behavioral health, and pharmacy. For mammograms, colonoscopies and other diagnostic follow-up patients are referred to Lewiston, Idaho or Clarkston, Washington about 10 miles away. There are oncology services available here as well, though some specialized treatments may require patients to travel more than 100 miles for care.

Shoshone-Bannock

Located southwest Idaho, near the towns of Pocatello and Blackfoot, the Not-Tsoo Gah-Nee Indian Health Center provides ambulatory services to about 13,400 Shoshone-Bannock and Northwestern Band of Shoshoni tribal members, as well as other AI/AN in the area.

The clinic consists of the Fort Hall Service Unit, a direct service IHS clinic, and the Shoshone-Bannock Tribal Health and Human Services Department, jointly accredited. This unique hybrid of a Tribally managed and direct service health care system is the only one of its kind in the country. The federal service unit provides outpatient medical, optometry and dental as well as lab, x-ray, and pharmacy services. The Shoshone-Bannock Tribal Health and Human Service Department provides services such as podiatry, cardiology, audiology, and orthopedics as well as Community Health Nursing. During the course of the NTCNP, the Navigator was also housed in this facility.

For mammograms, colonoscopies and diagnostic follow-up, patients can be seen in Pocatello or nearby towns. More specialized treatment may be referred to Salt Lake City, Utah (about 180 miles south).

Part 2

Methods

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Objectives of the Study

The long-term goal of the Northwest Tribal Cancer Navigator Program is to ensure that AI/AN patients have access to the same cancer care and services that are available to other groups.

The specific research questions addressed are:

1. Can working with a Patient Navigator reduce the time between abnormal finding and definitive diagnosis?

2. Where the diagnosis indicates treatment, can working with a Patient Navigator reduce the time between definitive diagnosis and the initiation of treatment?

3. Can working with a Patient Navigator improve the quality of life and subjective well being of Navigated cancer patients?

4. How accurate is RPMS in assessing the burden of cancer in Northwest Tribal communities and in tracking cancer-related services provided to the Northwest AI/AN?

5. What are the most common barriers to timely cancer care for this population, and how do Patient Navigators help patients overcome those barriers?

Study Design

In order to evaluate the effectiveness of the Patient Navigation Model, data were collected from both clinics with and without Navigator services. These groups are referred to in this report as Navigation clinics and Comparison clinics, respectively. Clinics were not randomly assigned to either group; however, attempts were made to match similar type, size and location of clinics across the two groups.

Navigation Clinics

Four Tribes and their respective clinics were recruited to serve as Navigation clinics. These clinics were contracted with NPAIHB to provide Navigation services for their clinic population.

Comparison Clinics

Four additional Tribes and their respective clinics were recruited to serve as Comparison clinics. Navigation services were not provided at these clinics, however they were contracted with NPAIHB. Clinical data were collected through chart reviews at Comparison clinics and no contact was made with patients in these communities.

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The Patient Navigator Model

Although there are as many definitions of Patient Navigation as there are programs, the general goal is the same: assist patients who have an abnormal screening test or cancer diagnosis in getting through the health care system maze. Difficulties arise for patients due to the increasing need to coordinate between different providers, pay for care and get to appointments, all of which can complicate or delay treatment when time is crucial. People who have inadequate insurance, language or cultural barriers face additional obstacles. Patient Navigation has been developed as a model to address barriers to effective cancer care, providing one person who acts as an anchor to help patients “navigate” the maze of their diagnosis and treatment.

For indigenous communities, Navigation was a natural fit as it reflects the traditional focus on caring for the health of the community.

The Patient Navigator Model, as depicted below, was the original model outlined for the study. Patients were to be recruited into the program following an abnormal cancer screening event

such as a breast lump or abnormal pap test. The Navigator would then guide them through diagnostic work up and into treatment should they have cancer. The vertical lines indicate where Patient Navigation begins and ends along the patient’s cancer journey.

The original model did not involve Navigating patients who had a cancer type outside of the four that have screening tests (breast, cervical, colorectal and prostate).

During program development and implementation, NTCNP discovered that there were conflicting viewpoints of how this model was interpreted and some crucial issues with the design that would make it difficult to place in Northwest tribal communities. An important aspect of the early part of the project was to revise the original research model to better serve AI/AN communities. This was accomplished through consultation with the Northwest Tribal Cancer Navigator Pilot Study staff and review of findings in the Pilot Study report, informal interviews with Navigators, clinic staff and tribal leaders and

Outreach Patient Navigation Rehabilitation

Initi

al C

onta

ct

Con

clud

e N

avig

atio

n

Screening Abnormal Results

Diagnosis SurvivorshipTreatment

Figure 1: The Patient Navigator Model

Expanded Expanded

Expanded Expanded

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indirect communications from patients via the Navigators.

Through this process, four primary issues were uncovered.

• Limiting eligibility to only participants with certain types of cancers was seen as unethical and exclusive in small tribal communities.

• The scope of the Navigator’s job only allowed for direct participant contact, not involvement with the community. This prevented Navigators from building relationships and trust within the community, and represented an individu-alistic point of view that was not congruent with tribal viewpoints.

• Navigators were expected to connect participants with existing resources. However, in these rural communities, resources often did not exist and needed to be established. Bringing new resources to the community became an important part of the Navigator’s role.

• The timeline of Navigation had distinct “start” and “stop” points. It was not acceptable for the Navigator to develop a strong relationship with the participant and family throughout cancer treatment and then abruptly discontinue contact when treatment ended.

Similarly, limiting contact with the family during the grieving process following a participant’s passing is not appropriate. On the other end of the spectrum, it was very difficult for Navigators to avoid contact with participants before their screening, when there is a clear need to get patients to that point. As the Navigators quickly became the “cancer person” for their community, they were expected to join - and in fact often create - screening events. This was also important in recruitment since following participants through their screening process was the easiest way to quickly identify those who went on to have abnormal findings.

After discussing these drawbacks to the model with the Navigators and community members, it was modified to expand the role of the Navigator while still being mindful that this is a research study and the design needed to reflect that.

Modifications to the original model included:

• Expanding eligibility criteria to include any patient with a cancer diagnosis or abnormality suspicious for cancer. The research design was retained by keeping variable definitions and data collection methods consistent with those described by the larger study. Data from

Added

to m

odel

Added to model

Added to model

Added to model

All Cancer Patients

Creating New Resources

Patient’s Family

CommunityOriginal Model

Original M

odel

Screenable Cancers Only

Existing Resources Only

Figure 2: Modifications to the Patient Navigator Model

NAVIGATOR

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participants with cancer types not meeting the original eligibility criteria were held in separate tables.

• Encouraging Navigators to get involved with community events. Navigators planned and attended health fairs, screening events, pow wows, fund raisers and luncheons throughout the community. It was important for them to partner with other clinic staff so they could take on this additional role without becoming overburdened.

• Faced with participant needs that were not being met by the existing resources, Navigators took proactive steps. They networked with local and national organizations and lobbied to bring additional resources to their communities. Some examples of increased services include mobile mammography and transportation services.

• The timeline of Navigation was made more flexible. Navigators helped participants overcome barriers to screening and promoted screening in the community. They also followed participants after treatment into survivorship. If a participant passed away, Navigators assisted the family members with the grieving process and estate issues. In order to retain the research design, participants were not formally enrolled until the eligibility criteria were met, and data was not collected on participants prior to this point.

Participant Eligibility

Navigators worked with any patient who was eligible to be seen at their clinic. However, for the purposes of the research design a more rigorous definition of eligibility was followed. This definition included any patient who had a test result or symptom suspicious for cancer, or any patient with a cancer diagnosis. At Comparison clinics, any patient with a chart showing an eligible event during the study period (June 1st 2006 to August 1st 2010) was enrolled.

Specific eligibility criteria were:

Breast, Cervical, Colorectal & Prostate

• Abnormal finding on clinical breast exam, mammogram, breast ultrasound or breast MRI

• Diagnosis of breast cancer

• Abnormal pap test result (excluded ASCUS if HPV test was negative)

• Visual/suspicious lesion on cervix

• Diagnosis of cervical cancer or precancerous lesion

• Rectal bleeding in patients age 30 or older with referral to specialist

• Positive FOBT or guaiac with referral to specialist

• Palpable rectal mass with referral to specialist

• Abnormal sigmoidoscopy, virtual colonoscopy, double contrast barium enema, or colonoscopy without biopsy

• Diagnosis of colorectal cancer including carcinoma in situ

• Abnormal digital rectal exam requiring referral

• Prostate Specific Antigen (PSA) over 4 ng/ml

• PSA < 4 with abnormal velocity requiring referral to urologist

• Diagnosis of prostate cancer

Other Cancers

Defining eligibility criteria for non-screenable cancers posed a greater challenge but Navigators worked with any patients who had an abnormal finding that was suspicious for cancer, as determined by their provider, or a cancer diagnosis.

Participants become eligible as soon as one of

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these criteria were true, and remained in the study until resolution of the issue, or the end of the study period. Resolution was through one of the following scenarios:

• Definitive diagnosis was obtained and was benign, or non-cancerous

• Primary cancer treatment was complete (excluding long-term ongoing treatment such as hormone therapy)

• Participant was lost to follow-up or decided to withdraw from the program

• Participant passed away

• End of the study is reached

At Navigation clinics, Navigators continued to work with participants after this formal resolution point, assisting with survivorship issues and follow-up care; however, this was not part of the research and no clinical outcomes were tracked during this period. Navigators continued to document their work with participants into survivorship but these data are not included in this report.

Since Navigators worked with participants who did not meet the formal eligibility criteria, as well as those who declined to participate in the research part of the study, their case loads included more participants than are reported here.

Overview of Navigators

Hiring and Training Navigators

Over the course of the project, seven Navigators were hired. The decision of whether to hire a nurse level or community level Navigator was left up to the clinics. In the end, three of the Navigators hired were registered nurses, one was a community health representative (CHR), and the other three were lay persons with some experience working in a medical setting.

Three of the Navigators were American Indian, two from the tribe at which they were employed, and one from another tribe. The other four were non-native. Two had lived and worked in the tribal community for many years, while the other two were new to the community.

Each Navigator was placed at the tribal clinic, and was overseen by community health or nursing supervisors. They were members of the clinic staff with full access to patient charts and the Resource and Patient Management System (RPMS), the clinic’s medical database. Each Navigator was hired at a full 1.0 FTE, and at various points throughout the project when

funding allowed for it, part-time assistants were hired to work alongside the Navigators. Although the clinic staff managed the Navigators within the clinic, their involvement in the research study was overseen by research staff at the NPAIHB office in Portland. Monthly data reports were submitted, and a report of any errors and concerns sent back. Navigators were asked to participate in bi-weekly conference calls with the research staff, both to manage and train the Navigators and to boost morale and provide a forum in which they could connect with other Navigators.

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When first hired, Navigators received an in-depth two day training. Those who were able also attended two national trainings offered by PNRP. Throughout their time in their positions, the Navigators pursued further professional development at training seminars, conferences and workshops

The Navigators were provided with resource guides and the first few weeks of their job was dedicated to getting to know the leaders of local resource organizations.

Creating good relationships with resources was essential to the Navigators’ success. Effective Navigators were outgoing, engaging people who networked extremely well. It was important to give a good amount of time at the start of the program for the Navigator to develop these relationships. Adding new resources to their network and building on those relationships continued throughout the Navigator’s time in their position although it did become less

time consuming as they progressed. It was also very important for the Navigators to give back to these partners. For example, Navigators joined community service integration groups, cancer coalitions and community boards. They presented at schools, jails, libraries, health fairs, conferences, workshops and meetings and wrote articles for local papers and newsletters. They helped with fund raising for foundations that regularly provided grants to their participants, and invited providers who worked with their participants to tribal events.

Sample job descriptions and details of the Navigator training materials can be found in Appendix G.

Participant Recruitment

Patients were referred to the Navigator at any point between abnormal finding and resolution, through several possible routes:

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1. Navigators created monthly lists of patients with abnormal screening results performed in the clinic using RPMS (see Appendix F for search queries). Navigators were never the first clinic staff member to inform a participant of a suspicious test result, unless that role was specifically designated to them. In most cases, the participant was first contacted by a clinician.

2. Providers in participating clinics referred patients to the Navigator either (a) at time of positive diagnosis of cancer or (b) when a cancer diagnosis seemed probable and the patient faced challenges to getting the diagnosis confirmed. This often included patients who needed a biopsy, mammogram, colonoscopy, or other diagnostic service not provided in-house.

3. After obtaining permission from the patient, providers at local oncology clinics and hospitals who had developed a working relationship with the Navigator informed the Navigator that they were treating an AI/AN patient who was interested in Navigation services.

Navigation Activities

Patient Navigation encompasses a wide variety of activities to match the range of needs of participants seeking cancer care through the participating clinics. The Navigator prioritized the needs of those participants with a cancer diagnosis, or who had a time-sensitive need for follow-up of an abnormal cancer screening test. At the lowest level of involvement, Navigators provided printed or verbal explanations of cancer-related issues. At higher levels of involvement, Navigators made home and hospital visits, arranged counseling for family members, and canvassed state and private agencies to help fund a participant’s treatment.

The Navigator’s primary tasks can be organized in the following categories*:

*A list of references for this section can be found in Appendix B

1. Assisting participants and their extended families.

Navigators assisted participants and their extended families by providing education, psychosocial support, coordination of resources, and facilitation of services.

• Education: Navigators provided information on prevention, screening, diagnostic procedures, disease course, treatments, community resources, and clinical trials. Education was intended to prepare participants and their families for what to expect and empower participants to make informed decisions.

• Support: Navigators played a role in providing emotional and psychosocial support services directly, or referring participants to mental health specialists or support groups within the community. Minimizing anxiety and building trust with participants are examples of the types of support Navigators delivered.

• Coordination of Resources: Navigators connected participants with transportation, financial resources, groups which could donate or provide at low cost medical equipment, social services such as housing and help with food or other needs impacted by their cancer journey.

• Facilitation of Services: Navigators worked closely with participants to identify and address logistical barriers to care, such as transportation, child care, and financial and insurance issues, and provided referrals to community resources and social services.

2. Interacting with providers and health care system.

• Navigators provided or arranged translation services, assisted participants and families with preparation of questions, and ensured information was understood .

• Barriers in accessing health care which

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were commonly addressed by Navigators included coordinating appointments, facilitating referrals, facilitating patient-provider communication, coordinating a multidisciplinary team of providers, and completing medical paperwork.

3. Interacting with community.

• Navigators often interacted with the community and engaged in a variety of community activities.

• Navigators networked and developed partnerships with local programs, organizations, and institutions to identify resources in the community such as screening facilities and financial assistance programs.

• Navigators also participated in cultural events within the community and provided information regarding the targeted disease and services available.

Databases

Several databases were used to collect all the data needed for the study. Full details of these databases as well as screen shots can be found in Appendix H.

Navigation Tracking Database

Navigators recorded information about their activities, the services they provided, and participant encounters in the Navigation Tracking Database.

Encounters

Participant “encounters” are similar to appointments that Navigators had with participants. They were quite flexible in definition, varying dependent on the participant’s needs. The location, length, type of activities and progress notes were recorded for each encounter.

Non-Participant Data

Within the same database, Navigators also recorded their contacts and non-participant meetings, trainings and outreach events. The contact section was particularly important as it prevented new Navigators from having to recreate the resource networks that had been put into place by their predecessors.

Referral Database

Here Navigators entered the details of patients who were possibly eligible for the study, what follow-up they needed and when it was due. In future, it would be preferable to expand eligibility to enroll participants before screening, and these databases would be combined into one. Alternatively, new tools such as iCare and CMET, which will be described later, may take the place of these stand-alone tools.

Navigator Reports

The database allowed for quick and easy reporting by the Navigators. De-identified data was emailed to research staff each month. This process kept Navigators from getting behind on data entry and greatly reduced the number of errors.

Clinical Database

In order to fully characterize the burden of cancer at each clinic, the cancer-related services being provided, and the impact of Navigation, NTCNP collected demographic and clinical data on all Navigated participants. The same data were collected for any participants meeting the eligibility critera at Comparison clinics. Patients were identified through Q-man and VGEN queries of the clinic’s RPMS database (see Appendix F) or through Navigator records.

A list of the variables collected during chart abstraction can be found in Appendix E.

In addition to these variables, research staff kept a list of participant names, clinic health record numbers, dates of qualifying diagnoses or visits, and outcomes (i.e., non-cancer resolution, cancer

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diagnosis, or no definitive diagnosis).

These lists were placed in secure locations with clinic staff during the course of the study and updated at each visit. At the completion of data collection the lists were left with the clinic to serve as a reference and possibly a starting point for a cancer registry.

Qualitative Data

To better understand participant needs and to learn about how working with the Navigator may affect a cancer patient’s quality of life, NTCNP also conducted in-depth interviews with a small group of Navigated participants and family members who agreed to the interview and to have their (de-identified) data used in the evaluation.

Informed Consent

One of the lessons learned during the Pilot Program was that Navigation services needed to be extended to all participants, regardless of whether they agreed to share their information for the research or not. During the Pilot Program, this approach was combined with a signed consent

form, but after two years it was determined that this protocol was posing an obstacle for the study. Only about seven percent of participants agreed to sign the form and release their information for the study. The signed consent form not only made the research portion of the study impossible, it hampered the effectiveness of Navigation due to its impact on the Navigator-participant relationship.

Based on the experience of the Pilot Program, and as this was considered minimal risk reserach, NTCNP requested and received a waiver of informed consent (under HHS Regulations Title 45 CFR 46) from the Portland Area Indian Health Service Institutional Review Board.

Instead of signing an informed consent, participants were given a one page “information sheet” (see Appendix J) which contained a detailed description of the program, what services would be offered, what services were not a part of the program, data that would be submitted to the research team for analyses and how it would be reported, the risks and benefits, and who to contact if they had any questions or concerns.

The Navigators were trained in how to present this information sheet, reading the text aloud and pausing in between each section to make sure the participant understood and answer any questions. They also highlighted the toll-free number participants could call if any questions came up later. It was made clear to the participants that they would receive the same services whether they agreed to participate in the research or not.

So while all the same information was discussed with participants, no written consent was collected. This approach constituted an “opt-out” method of participation, meaning that after the information sheet was presented, the participants were considered part of the study unless they asked to be removed.

As there was no participant contact at Comparison clinics, no information sheet was given to those patients.

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Participant Survey

This section describes the methods employed to complete the participant interviews for the NTCNP survey. The interviews were conducted from July 9th 2010 through December 16th 2010.

Survey Instrument

The survey instrument for this study was a semi-structured questionnaire developed by NTCNP research staff, in conjunction with Navigators and community members (The entire questionnaire can be found in Appendix I). Prior to drafting the survey instrument, a literature review was conducted on the current recommendations for adapting standard instruments and protocols to a specific culture. Much of the existing literature focuses on the importance of a cultural review and an iterative process in designing measures which will be understood and appropriate for the culture in which they are to be used (16,17). In addition, the research highlights the importance of including open-ended questions and allowing for a story-telling approach to interviewing in order to suit the communication style of Native communities (16,17,19). Some authors identified a face-to-face semi-structured interview as the mode of choice for American Indian populations (15,17,18). While each Tribe has its own distinct communication style, language and culture, some of the literature has identified cross-tribal commonalities which, when combined with information from those familiar with the

customs of tribes involved in this project, generated a foundation for the design of the survey.

Using this research as a jumping off point, a semi-structured questionnaire was drafted, intended to collect both qualitative and quantitative results. The conversational style of the questionnaire was designed to allow plenty of interviewer-respon-dent interaction and to encourage the interview to unfold in a story-telling manner rather than a more structured interview. In addition, given that this questionnaire was one of the first of its kind, and the Navigator model in Indian Country is still in a fledgling stage, open-ended responses were essential to allow for enough qualitative data to provide context and capture unexpected responses.

The questionnaire measured the quality of life objectives of the program, in addition to participant satisfaction with the Navigator Program. Questions addressed communication with the health care team, patient decision making, coping with the emotional burden of cancer, cultural and modesty concerns, logistic barriers to care, financial barriers to care, and importance and satisfaction ratings of Navigator services.

The questionnaire was reviewed by Navigators and community members for flow, ease of understanding, relevance and cultural appropri-ateness, and revised according to their feedback. It was then pre-tested on two respondents who also gave input and final adjustments were made before it was deployed to the main group.

The questionnaire was programmed into Computer-Aided Personal Interviewing (CAPI) software. Special care was taken in scripting the skip patterns and other interviewing instructions in order to ensure that the survey would automatically adhere to the rules of logic

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and consistency during the interviewing process. Interviewers were thus able to focus on the respondent rather than the instrument in front of them, and data was automatically entered into the computer which avoided additional data entry.

Sample Design

The study population was defined as all participants who had worked with the Navigator for at least three weeks, and had at least three encounters. Due to the small number of patients from which to choose and the different cultures and needs of the communities in the study, it was decided that all eligible patients would be approached rather than a sample.

In total, 40 interviews were completed. Of the four Navigation clinics, only three are represented in this survey; unfortunately, due to logistic issues with the fourth clinic it was not possible to interview any of the patients there. As the interviews were done after Navigation services had ended, patients who had passed away are not represented either.

Respondents were first contacted by their Navigator to inform them about the survey and that they would be contacted by an interviewer. In two communities, interviewers were community members; the third was not a member of the community. Although the interviewers who were members of the community often knew the respondents, none of the interviewers were associated with the Navigator program and no individual respondents’ interview details were shared with Navigators.

Interviewers contacted respondents by phone, letter or in person to schedule the interview at a time and place of the respondent’s choosing. A brief overview of the purpose of the study, expected length and incentive was described over the phone. Respondents were contacted up to three times, at which point interviewers classified the respondent a “refusal” and made no further attempt to interview.

Respondents were given the choice to do the

interview over the phone or in person; in either case, the questionnaire was the same and conducted using CAPI software. The majority (85%) were done in person; given the small number completed by phone, ability to compare the modes is limited but very generally it can be said that there were no major differences between the two groups.

Informed Consent

The interview began with an explanation of informed consent. Interviewers read the consent document aloud to respondents, pausing to confirm that the document was understood and address any questions. As part of the consent discussion, the interviewer asked for permission to record the conversation for qualitative analyses. All respondents agreed to have the interview recorded. The average duration of the meeting including set-up and consent discussion was about one hour and twenty minutes. Duration of the actual interview was about half an hour.

A $30 gift card incentive was provided to respondents who completed the interview.

Responses were linked to the greater study data set by the study ID, but were not linked to the respondent’s name, address, or any other identifying information. Consent forms and contact information needed to mail gift cards were kept in locked files, separated from the survey data.

Respondents were given the option to skip any

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question they did not feel comfortable answering, however very few chose to skip any questions.

Data Collection

All fieldwork was governed by rigorous standards of quality control, designed to ensure quality and accuracy in obtained data. Interviewers with previous interviewing experience were hired specifically for this project. Each had a day of training which covered general interviewing technique, the purpose of the survey, detailed review of the questionnaire along with role-playing, mock interviewing, and training on the CAPI software. After completing two or three interviews, audio recordings were submitted to research staff for review. Additional training was provided if deemed necessary based on their performance.

Response Rates

Response rates were calculated based on the Council of American Research Organization (CASRO) method, with slight adjustments. After reviewing the records of participants who met the eligibility criteria (i.e., at least three weeks Navigation, and at least three encounters, not deceased) 112 participants were found. This yielded 40 completed interviews for and a CASRO response rate of 40%. Demographic comparisons were made of the non-responding but eligible patients versus the respondents and very few differences were found. The largest difference

was that the survey respondents had a higher proportion of breast cancer patients than the eligible group overall.

Data Processing

The majority of coding for this survey was done by the interviewers during the course of the interviews. The CAPI software allows interviewers to enter respondents’ answers directly into software which can then export to a delimited flat file for import into the chosen analysis package. For this project, quantitative data analysis was carried out using the statistical software package SPSS.

Recorded interviews were transcribed by paid transcriptionists. Any identifying details in the transcripts were purged. Qualitative data elements were analyzed using ATLAS.ti software to identify recurring themes and patterns.

Bias and Limitations

Data are limited to self-reported opinions and the instrument has not been validated. Given the small number of responses and the fact that only three clinics in the Northwest were represented in these responses, the results cannot be extrapolated to the entire Northwest; however, they probably paint a reasonably accurate picture of the participants in the Navigator program. The results are best used as a qualitative basis for future program objective models and evaluation surveys.

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Analytical Methods

Description of variables

Initially 604 variables were defined in the data dictionary including demographics, clinical information, type and date of first abnormal finding, definitive diagnosis, type of cancer treatments, and participant satisfaction survey responses. During the analysis several variables were recoded as necessary for analysis. Health care coverage was collapsed to the categories direct-care service only, direct-care & CHS only, Medicare/Medicaid, Other combinations, and Private insurance. The cancer abnormalities were grouped as breast, cervical, colorectal, prostate, and other cancers. Individual Charlson Co-morbidity questions were used to calculate a single index value for each participant and height and weight were used to calculated body mass index. The type of abnormal finding was classified into two categories: those which required immediate follow-up and those which were recommended for a six month follow-up (this is referred to as severity of abnormal finding in the results).

Ten participants were enrolled with multiple concurrent abnormalities (defined as two abnormal findings or diagnoses within 30 days). During the analysis these participants were assigned to a single cancer type using the following criteria: where the date of definitive diagnosis was missing for one, the cancer type with complete data was assigned (n=4); where complete data was available for both, the cancer type with earliest date of abnormal finding was assigned (n=4); where both abnormal findings occurred on the same day (n=2), sensitivity analysis was undertaken to assess the impact of assigning each participant to one or the other cancer type. This analysis showed no impact on the outcome, so these two cases were assigned to the cancer type with the smallest sample size.

The primary outcome variable (T1) was calculated

as number of days from abnormal finding to definitive diagnosis. T1 was categorized into two groups: the first included participants who obtained a definitive diagnosis in 365 days or fewer. The second group included those who waited more than 365 days for a diagnosis, and those who had not received any diagnosis by the end of the study period. There were 22 participants who had an abnormal finding and definitive diagnosis on the same day (T1=0); these were excluded from the outcome analysis. The rationale for the exclusion was that these participants would not have received any benefit from Navigation since both screening and definitive tests were performed on the same day.

Another 10 were excluded due to pre-existing cancer. Pre-existing cancer was defined two ways. Participants who began treatment before enrollment (or before the study began in the case of Comparison participants) were excluded. Additionally, any participants who had a cancer diagnosis within five years or less of the eligible diagnosis were excluded as these participants would have been entering the study with a relatively greater understanding of the system and how to navigate through a cancer diagnosis, having recently been through it.

In order to avoid an inflated proportion of undiagnosed participants enrolled toward the end of the study, all participants with an abnormal finding resulting in a recommended six-month follow-up (such as BIRADS 3 for mammogram or ASCUS on a pap test ) were excluded if the date of that abnormal finding was less than six months from the final date of data collection.

Statistical Analysis

The initial analysis included descriptive statistics and graphs to understand distribution and char-acteristics of the study sample. The mean and

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median number of days from abnormal findings to definitive diagnosis were calculated and compared between Navigated and Comparison groups. Clustering effects within the clinics were anticipated due to the study design. Therefore, during the outcome analysis an appropriate statistical model was selected in order to correct for this.

Due to the drastically different disease courses, follow-up guidelines and treatment pathways for each type of cancer, the ideal analysis plan would have been to examine each cancer type separately. However, due to the limited sample size in this study it was not possible to do so. Instead, all cancer types had to be combined to maximize the sample size available.

There still exist controversies over who should receive follow-up diagnostic tests, and which is the optimal time line for follow-up tests after the initial abnormal screening tests. 72 Therefore, during the outcome analysis various models were created and tested using different time intervals between abnormal finding and definitive test. Using a Generalized Linear Mixed Model, three individual models were created with outcome variable cut off point of 30 days, 60 days and 90 days. After adjusting for potential confounders, the analysis showed that there was no significant difference between Navigated and Comparison groups with respect to early diagnostic resolution in these three models.

During the preliminary descriptive analysis it was observed that higher proportion of Comparison participants went undiagnosed or waited an extremely long time to receive a definitive diagnosis. In reviewing the detailed notes on these cases it became clear that these two groups experienced similar circumstances. Participants who waited more than a year were usually those who had been lost to follow-up with regard to the initial abnormal finding. In most cases the resolution of the abnormality was not through a series of contacts and interim follow-up tests. Rather, these were usually participants who had

no contact with the clinic for several months and who did not pursue the recommended follow-up tests. Eventually the patient returned to the clinic, usually for an unrelated issue, and was given a routine screening or, less commonly, the old abnormal finding was discovered in their chart and a new referral for follow-up was issued.

Since these cases were often resolved in this manner they shared more similarities with a case that went unresolved than those which were resolved in the short-term through sustained follow-up efforts. For this reason the cases with extreme delays and the undiagnosed were combined. One year was chosen as the cut off point for “extreme delays” for ease of interpretation and because these were the cases which, upon review, seemed most often to have been completely lost to follow-up between the initial abnormal finding and eventual resolution.

The primary outcome analysis of interest was to test whether the odds of receiving definitive diagnosis within a year significantly differed between Navigated and Comparison participants. Once again the Generalized Linear Mixed Model was selected to correct for clustering within clinics. Covariates such as age, gender, body mass index, health insurance, Charlson Co-morbidity Index (CCI), cancer type, cancer stage, metastasis, and severity of disease were adjusted for during the final analysis.

Outcome analysis began with univariate analysis to identify covariates eligible for entering in the main effects model. Effect modifiers were then identified by including interaction terms, and finally backward selection was used to build the adjusted multivariate model.

The statistical software SPSS version 17.0 (SPSS Inc., Chicago IL) was used for the initial data preparation and descriptive analysis, and SAS version 9.2 package was used for the outcome analysis. All the statistical tests were two sided and a p-value of <0.05 was considered significant.

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Results

Part 3

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Part 3 At-a-Glance Data Summary

• Participant enrollment began in June 2006 and continued through August 2010.

• 151 participants who were eligible for the study were enrolled at Navigator clinics.

• 1036 participants who were eligible for the study were enrolled at Comparison clinics.

• Nearly all Comparison participants were tracked from before diagnosis; among Navigated participants, only 62% were enrolled before diagnosis.

• Among Comparison participants, most were enrolled following abnormal breast findings; for Navigated participants, screening abnormalities were harder to find. As a result, 40% were enrolled following abnormal findings or cancer diagnoses outside of the four screenable types.

• Among Navigated participants all but five percent were diagnosed by the end of the study. For Comparison participants, a quarter had no diagnosis by the end.

• Among those who obtained a diagnosis, most had a benign resolution.

• About one third had private insurance coverage while 38% relied solely on direct-care and CHS for care.

• Over 80% were overweight or obese.

• There were 2723 participant encounters.

• The most common encounter activities were patient education, communication with the health care team and ensuring patient charts were updated and complete.

• Participants surveyed ranked paperwork assistance, scheduling appointments and finding housing as the most helpful Navigator activities.

• The characteristics most valued in a Navigator were the ability to answer questions and respect for participant’s values and choices.

• Over 80 percent rated the program as “good” or “excellent” and close to 80 percent would recom-mend it to a friend or family member who had a cancer diagnosis.

• Participants who had abnormal cervical findings waited the longest for a diagnosis, while those with abnormal breast findings or a cancer-related abnormality not arising from a screening had the shortest time to diagnosis.

• For those with a cancer diagnosis, the median wait was about a month to start treatment. The wait time was about the same for both Navigated and Comparison participants, but there were not enough data to draw meaningful conclusions about why this might have been.

• After adjusting for possible biases in the study design, the odds of obtaining definitive diagnosis within a year from abnormal findings was 3.6 times higher for Navigated participants as compared to Comparison participants.

• Health care coverage, cancer type and cancer stage were also significantly related to time to diagnosis.

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Enrollment and DemographicsTable 1: Demographic Characteristics of Participants

Navigated (n=151) Comparison (n=1036)Characteristics Count Percent (%) Count Percent (%)Tribe 1 31 21.7% ─ ─Tribe 2 49 31.6% ─ ─Tribe 3 57 36.8% ─ ─Tribe 4 14 9.9% ─ ─Tribe 5 ─ ─ 282 27.2%Tribe 6 ─ ─ 119 11.7%Tribe 7 ─ ─ 249 24.3%Tribe 8 ─ ─ 386 36.9%Total 151 100.0% 1036 100.0%Age

Median Age 53 years 47 years Mean Age 52 years 46 years 18-29 Years 20 13.2% 250 24.2%30-39 Years 12 7.0% 129 12.5%40-49 Years 33 21.9% 178 17.2%50-59 Years 40 26.5% 222 21.5%60-69 Years 24 15.9% 151 14.6%> 70 Years 22 14.6% 103 10.0%Total 151 100.0% 1033 100.0%Body Mass Index

Mean BMI 33 32 Less than 18.5 (Underweight) 6 4.1% 10 1.0%18.5 -24.9 (Normal weight) 22 15.2% 147 14.3%25-29.9 (Overweight) 27 18.6% 287 27.9%30-39.9 (Obese) 64 44.1% 443 43.1%40 or Higher (Morbidly obese) 26 17.9% 140 13.6%Total 145 100.0% 1027 100.0%Gender

Male 36 23.8% 216 20.8%Female 115 76.2% 820 79.2%Total 151 100.0% 1036 100.0%Health Care Coverage

Direct-care services only 18 12.0% 114 11.0%Direct-care & CHS only 37 24.7% 280 27.1%Medicare/aid, direct-care and CHS 9 6.0% 193 18.6%Other combinations (no private ins.) 28 18.7% 92 8.9%Private insurance 58 38.7% 356 34.4%Total 150 100.0% 1035 100.0%Disease Status at Enrollment

Abnormal Findings 94 62.3% 1030 99.4%Cancer Diagnosis 57 37.7% 6 0.6%Total 151 100.0% 1036 100.0%Charlson Co-morbidity Index (CCI)

No Co-morbidity 94 62.3% 779 75.2%At least one CCI co-morbid condition 57 37.7% 257 24.8%Total 151 100.0% 1036 100.0%

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During the course of the study, 1036 participants were enrolled at Comparison clinics while 151 were enrolled at Navigation clinics.

The higher number at Comparison clinics reflects the larger size of the clinics and the fact that participants could be enrolled retrospectively as Comparison participants were not contacted directly, but rather the data were abstracted from their charts at any point during or after their cancer journey.

At Navigation clinics, Navigators had a limit to the size of case load they could handle, and also had to identify and enroll participants before their case was resolved. Participants at Navigation clinics also had the option to opt out of the research while still receiving Navigation services. Due to these issues, a number of participants who were technically eligible may not have been enrolled on the intervention side.

As mentioned previously, Navigators actually worked with many more than the 151 participants included in these analyses; they worked with participants who needed screening but did not have an abnormal finding, those who were survivors some years out from active treatment, and those who declined to share their information for the purpose of the research study. Thus, the numbers shown in the chart below for Navigation clinics under represent the number actually helped by the program.

It is also important to note that these numbers are not a count of the cancer cases at the clinic; they include many participants who had abnormal screening tests but who went on to have a benign resolution.

Figure 3: Participant Totals by Clinic

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In general the program enrolled about three times more women than men, primarily because abnormal pap tests and mammograms are more commonly seen in the clinics than male screening abnormalities. The Navigators did great work organizing men’s health fairs, but it was difficult to recruit men to the program. While it makes sense that these data include more women than men, this is probably a good reminder that men tend to be less aware of preventive health recommendations and Navigators may need to devote special attention to identifying and following-up with male participants.

Base: All Participants. Comparison (n=1036), Navigated (n=151)

Figure 4: Participant Gender

Figure 5: Participant Age

Base: All Participants. with valid DOB Comparison (n=1033), Navigated (n=151)

The average age of participants was about 50 years old. Navigated participants tended to be slightly older than those enrolled at Comparison clinics, most likely related to the higher number of cervical participants at the Comparison clinics.

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Body Mass Index (BMI) is a measure of healthy weight for a given height. To calculate BMI, convert weight to kilograms and height to meters. The calculation is then weight divided by height squared i.e., BMI = (Weight in Kilograms / (Height in Meters x Height in Meters )).

BMI is generally divided into five categories: below 18.5 is underweight, 18.5 to 24.9 is healthy weight, 25.0 to 29.9 is overweight, 30.0 to 34.9 is obese and 35 or higher is morbidly obese.

As seen in Figure 6, the overwhelming majority of participants were either overweight or obese. In fact only 14 percent of Comparison and 15 percent of Navigated participants had a normal BMI.Figure 6: Body Mass Index

Base: All Participants with valid height and weight. Comparison (n=1027), Navigated (n=145)

0%

10%

20%

30%

40%

50%

Comparison Navigated

1% 4%

14% 15%

28%

19%

43% 44%

14% 18%

Underweight Normal Overweight Obese Morbidly obese

Co-morbid conditions identified by the study are those included in the Charlson Co-morbidity Index*. The index comprises 15 major conditions including myocardial infarction, congestive heart failure, renal and liver disease, AIDS/HIV and diabetes.

Most participants did not have any co-morbid conditions. Among Comparison participants, one quarter did have at least one co-morbid condition, while 38% of Navigated participants had at least one. Co-morbidities are related to age, so it is not surprising that the Navigated participants were more likely to exhibit one of these. The most common co-morbid condition was diabetes (about 10 percent of cases).

Figure 7: Co-Morbid Conditions

Base: All Participants. Comparison (n=1036), Navigated (n=151)

* The Charlson co-morbidity index is used to predict the chance a patient will die from their conditions within a year. Each of the 15 conditions is given a score indicating the risk of death. These are summed to generate the index score for this patient. It is collected in this study as a way to identify other conditions that may have impacted the patient’s outcome or what treatment they received. See Appendix A for a list of conditions in the CCI.

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Health care coverage for participants is seen in the chart below. A little more than one third had private coverage, and this proportion was a little lower at Comparison clinics than at Navigated; this is likely due to one Navigation clinic which had much higher rates of private coverage, as this tribe provided a self-funded health coverage plan for members and tribal employees using CHS funds. The rate of private insurance coverage at the other three Navigation clinics combined was 29%.

Another third relied solely on direct-care and CHS services for care and, for about 11 percent, direct-care services were their only option for care. This group is particularly challenging to navigate through diagnosis and, if needed, cancer treatment as most diagnostic and cancer care takes place outside of the clinic and therefore is not included in the direct-care services available to these patients.

Base: All Participants with valid insurance information. Comparison (n=1035), Navigated (n=150)

Figure 8: Health care Coverage at Enrollment

0%

20%

40%

60%

Comparison Navigated

11% 12%

27% 25%

19%

6% 9%

19%

34% 39%

Direct-care OnlyDirect-care & CHS onlyMedicare/aid, IHS direct and CHSOther combinations, no private coveragePrivate insurance

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As mentioned earlier, enrolling participants early, before diagnosis, was difficult for the Navigators. In the first two years of the study, two thirds were not enrolled until after diagnosis. Through a concerted effort of extensive training, regular searches of RPMS and presentations to staff, this was turned around in the latter half of the study so that, by the end, most were being identified before diagnosis. In the end 62% of Navigated participants were enrolled pre-diagnosis.

Because participants at Comparison clinics were enrolled through chart reviews, not through actually meeting with the participants, all could be tracked back to the initial abnormal finding and therefore were “enrolled” at the earliest point in their disease trajectory.

The 1% shown here who were enrolled after diagnosis on the Comparison side represents a handful of individuals who were diagnosed before the start of the study, but did not begin treatment until after the start of the study. If a participant was diagnosed and began treatment before the study start date, they were not enrolled. Those who were diagnosed but had not started treatment on the study start date were enrolled, but only post-diagnosis information was collected from their chart.

Figure 9: Disease Status at Enrollment

Base: All Participants. Comparison (n=1036), Navigated (n=151)

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The next chart shows the distribution of participants enrolled with different abnormal findings or cancer types. Most were enrolled following an abnormal breast or cervical finding; this was usually through abnormal pap tests and screening mammograms at the Comparison clinics. Abnormal clinical findings were more common at Navigation clinics.

The Navigation clinics had more difficulty enrolling participants with screening abnormalities, leading to a larger proportion of “other” cancer types – these included mostly abnormal skin lesions or moles, lung, kidney and thyroid cancers.

The Comparison clinics also had notably higher proportions of participants enrolled for colorectal abnormalities or cancer; this is largely due to a high rate of screening with FOBT at one tribe which was actively working on screening for colorectal cancer, and at which over one third of participants were in this category.

Figure 10: Types of Abnormal Findings and Cancer

Base: All Participants. Comparison (n=1036), Navigated (n=151)

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As seen in Figure 11, about one quarter of participants at Comparison clinics had not obtained any definitive diagnosis by the end of the study. At Navigation clinics, all but 5% had been resolved.

Participants who had abnormal pap tests had the highest risk of going un-diagnosed. This group poses a distinct challenge for follow-up. They tend to be young women (71 percent fall into the 18-29 year age group), often without a permanent home-base, phone number, or health coverage. This makes them difficult to track, and with limited access to care. They are often too young to qualify for state breast and cervical programs. Moreover, women in this age group may not see preventative care as their foremost concern.

There are also many women who receive mild abnormal results (ASCUS pap findings), for which the recommended follow up is a repeat pap in a short interval. However, keeping these women in touch with the clinic during the intervening months in order to get them back for that follow-up is difficult.

A final challenge is that some of these women become pregnant before follow-up testing is complete, which delays the diagnostic work-up until after the baby is delivered. For women who consistently came into the clinic for their pre-natal care these cases were generally picked back up at the six week postpartum visit. However, if the woman fell out of contact with the clinic during her pregnancy or after delivery, these cases were often lost to follow-up.

For these reasons, particular attention must be paid to this group.

Figure 11: Outcome of Cases Enrolled

Base: All Participants. Comparison (n=1036), Navigated (n=151)

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Profile of Participants with Abnormal Breast Findings

Figure 12 shows the proportion of participants who received different kinds of abnormal breast findings. Abnormal findings on breast imaging tests are generally categorized by the Breast Imaging-Reporting and Data System (BIRADS) scale. BIRADS 0 results indicate the image was not sufficient to make a diagnosis, and women who have this result are recommended to have a repeat test as soon as possible to obtain a better image. BIRADS results of 1 and 2 are normal and do not require any follow-up. A BIRADS result of 3 is described as “probably benign” and women with this result are usually recommended to have a short interval follow-up, generally in three or six months. BIRADS results of 4 or 5 are suspicious for malignancy and women with these results are usually recommended to have immediate follow-up. The distribution is similar between the two groups, with about three quarters receiving a finding that is recommended for immediate follow-up. For this analysis, abnormal breast findings were categorized by the follow-up recommendations. The first category includes BIRADS 3 and clinical findings, while the second includes BIRADS 0, 4 and 5.

Figure 12: Severity of Abnormal Breast Findings

Base: All participants with an abnormal breast finding. Comparison (n=358), Navigated (n=46)

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Diagnostic mammography was the most common way abnormal breast findings were resolved. This could have been a mammogram following abnormal clinical findings such as a lump, or a follow up mammogram after an abnormality was discovered on a screening mammogram.

In some cases a follow-up breast ultrasound was ordered rather than a diagnostic mammogram, and in other cases the diagnosis was found through biopsy (usually following an abnormal diagnostic mammogram or ultrasound).

Figure 14: Breast Cancer Treatment

Base: Participants who had breast cancer treatment. Total (N=52); note that due to multiple treatments per participant, percentages do not add to 100%. Categories with less than 5 participants are included in “Other” to protect participant privacy.

Figure 13: Most Common Diagnostic Tests - Breast

Base: Participants who had definitive diagnosis for breast findings (n=351)

Three quarters of all participants who had treatment for breast cancer had a lumpectomy. More than half also had radiation, with a smaller proportion treated with hormone therapy and chemotherapy. Nearly 30 percent were treated with mastectomy, which is slightly lower than national rates reported through SEER data from 2000 to 2006; a recent study based on these data report a rate of 37% treated with mastectomy 68. While rates found in the NTCNP cannot be extrapolated to other tribes, this is a positive finding as other research has identified lower rates of breast conserving surgery and higher rates of mastectomy among minority and disadvantaged women 69.

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Profile of Participants with Abnormal Cervical Findings

Most of the cervical abnormalities were discovered through pap test and were usually referred for a follow-up colposcopy (viewing the cells with a special microscope). During colposcopy, a small biopsy is often taken and this was the most common way cervical diagnosis was determined. About half of cases were resolved through a repeat pap test; in some cases a repeat pap test shows that an infection has resolved and only normal cells are seen. Colposcopy alone was the third most common test which resolved these cases. Another option to take a sample is Endocervical Cutterage. LEEP (Loop Electrosurgical Excision Procedure) was also used in a few cases; this is a treatment as well as diagnostic tool in which a thin wire is used to remove the abnormal cells.

Figure 15: Most Common Diagnostic Tests - Cervical

Base: Participants who had definitive diagnosis for cervical findings (n=179)

Figure 16: Cervical Cancer and Pre-Cancer Treatment

Base: Participants who had cervical cancer treatment. Total (n=29). Note that due to multiple treatments per participant, percentages do not add to 100%. Categories with less than 5 participants are included in “Other” to protect participant privacy.

The most common treatment for participants with abnormal cervical findings was cryotherapy, in which a special tool is used to freeze the affected cells, followed by LEEP and cone biopsy.

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Profile of Participants with Abnormal Colorectal Findings

Colorectal abnormalities were most often resolved by biopsy of polyps or abnormal areas found during colonoscopy. Quite often colonoscopy following rectal bleeding or positive FOBT finds no polyps, and a non-cancerous resolution. Thus slightly less than half were diagnosed by colonoscopy without biopsy. Other diagnostic tests included sigmoidoscopy and barium enema.

Figure 17: Most Common Diagnostic Tests - Colorectal

Base: Participants who had definitive diagnosis for colorectal findings (n=160)

Figure 18: Colorectal Cancer Treatment

Base: Participants who had colorectal cancer treatment. Total (n=23). Note that due to multiple treatments per participant, percentages do not add to 100%. Categories with less than 5 participants are included in “Other” to protect participant privacy.

Among participants who had treatment for colorectal cancer the most common were chemotherapy, surgery and radiation therapy. Other less common treatments included neoadjuvant chemotherapy, palliative and hospice care. Note that while hospice and palliative care are not technically treatment, they were recorded this way for the sake of the study, as an end date for the T1 time span.

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The most common treatments for prostate cancer were surgery (prostatectomy), hormone therapy and radiation therapy. A number of participants had other treatments for prostate cancer, but not more than five had any one type of treatment so they are not listed here. The other treatments included interstitial (seed) radiation (also known as brachytherapy), and chemotherapy. Also included are watchful waiting, palliative and hospice care. While not technically treatment for the cancer, these were recorded this way for the sake of the study, as an end date for the T1 time span.

Profile of Participants with Abnormal Prostate Findings

The most common diagnostic test for prostate abnormalities was a biopsy, using transrectal ultrasound (TRUS) to guide the biopsy. Less invasive and less common testing included follow-up PSA tests, ultrasound and clinical assessment.

Figure 19: Most Common Diagnostic Tests - Prostate

Base: Participants who had definitive diagnosis for prostate findings (n=42)

0% 10% 20% 30% 40% 50% 60% 70% 80%

Other Treatments

External Radiation Therapy

Hormonal Therapy

Prostatectomy

78%

28%

28%

39%

Figure 20: Prostate Cancer Treatment

Base: Participants who had prostate cancer treatment. Total (n=18). Note that due to multiple treatments per participant, percentages do not add to 100%. Categories with less than 5 participants are included in “Other” to protect participant privacy.

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Profile of Participants with Other Abnormal Findings

All cancer types outside of the four screenable ones (breast, cervical, colorectal and prostate) were combined into the “other” cancer category. Among the participants who were enrolled for these cancer types, or abnormal findings unrelated to the four major screening tests, the most common were detected through imaging studies. This includes Computerized Axial Tomography (CAT/CT scans), X-Rays, Magnetic Resonance Imaging (MRI), Ultrasound and Positron emission tomography (PET scans). In cases where a clinical evaluation or complaint was noted in the chart preceding the imaging test, these were coded as such. Thus the 35 percent found through imaging studies reported here were mostly incidental findings during exams ordered for other reasons.

Other common routes of discovery for these abnormalities were patients presenting to the clinic with a mass, mole, or skin lesion which they considered worrisome. A few participants came into the study following an emergency room visit, usually for shortness of breath, unexplained bleeding or pain - symptoms which were related to the cancer. However, occasionally the findings were uncovered incidentally during an emergency room visit for something unrelated.

Figure 21: Tests yielding “Other” Abnormal Findings

Base: Participants enrolled for other cancer types. (n=188)

Figure 22: Treatments for Other Cancer Types

Base: Participants enrolled with Other cancer types who had treatment. (n=95)

0% 10% 20% 30% 40% 50%

Other Treatments

Hospice Care

Palliative Care

External Radiation Therapy

Chemotherapy

Excisional Biopsy or Complete Resection

39%

15%

19%

23%

39%

42%

Of those enrolled for “other” cancer types who had treatment, the most common was an excisional biopsy or complete resection to remove the tumor or affected area. Chemotherapy was the next most common treatment, followed by radiation therapy. Palliative and hospice care are included here again, although not technically treatment, as they were considered an end point of the T1 time span for the study.

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Figure 23 shows the median number of days from the initial abnormal screening test to when the participant received a definitive diagnosis.

Participants with abnormal pap tests waited the longest for diagnosis and, as mentioned earlier, were also the most likely not to obtain a diagnosis at all during the study period.

Participants with abnormal breast findings waited the shortest time for a diagnosis at Comparison clinics, while those who had “other” abnormalities had the shortest wait at Navigation clinics.

Figure XX: Median number of days from Abnormal findings to Definitive diagnosis

0

20

40

60

80

100

120

140

160

180

200

Comparison Navigated

16

35

107

193

42 42

66 77

35 28

Breast Cervical Colorectal Prostate Other

Figure 23: Median Number of Days from Abnormal Finding to Diagnosis

Base: All Participants with definitive diagnosis. Comparison (n=728), Navigated (n=129)

Figure 24 shows the mean and median number of days from definitive diagnosis to the start of treatment for all cancer types combined. A small number of unusual cases can draw the mean upward, and that is the case for these data, so median is a better measure to consider here. Looking at the median, both groups are about the same, with most participants waiting about one month to begin treatment. Of course, the overall median reflects the distribution of cases across cancer types, so the relatively longer cervical cases contribute heavily to the overall median for the comparison group, while the “other” cases, with their shorter waits, influence the navigated group.

Figure 24: Number of Days from Diagnosis to Treatment Start

Base: All participants who had treatment for cancer. Comparison (n=78), Navigated (n=31)

Figure XX. Number of Days from Definitive Diagnosis to Treatment Start

0

10

20

30

40

50

60

Comparison Navigated

50 43

32 30

Num

ber o

f Day

s

Mean Median

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Outcome Analysis

A total of 1236 participants were enrolled between June 2006 and August 2010. Thirty-two subjects were excluded from the study sample due to ineligible conditions such as pre-existing cancer diagnoses or the participant’s request not to be included in the research. For an additional 17 participants, essential data were missing which resulted in removal of these cases from the research sample. The final study sample included 1187 subjects. These included 151 who received Navigator services and 1036 who did not (Comparison participants).

The primary outcome variables assessed in this analysis were two time intervals. The first interval was from initial abnormal finding to definitive diagnosis (T1). The second was from definitive diagnosis to start of treatment (T2). Through the analysis we hoped to determine whether or not Navigation was associated with a shorter T1 and T2 interval.

Table 2: Mean and Median of T1 and T2 in Days

Number of Days From Abnormal Findings to Definitive Diagnosis (T1)

Count Mean MedianComparison 728 115 42Navigated 129 88 37

Number of Days From Definitive Diagnosis to Treatment Start (T2)

Count Mean MedianComparison 78 50 32Navigated 31 43 30

Time from Initial Abnormal Finding to Definitive Diagnosis (T1)

One of the primary research goals was to assess whether or not Navigators could reduce the time participants waited between the first abnormal finding and definitive diagnosis. Many data were collected to measure potential confounders which may bias results. Initially, the following variables were included in a univariate model to assess whether or not they had a significant relationship with T1: age, gender, BMI, health care coverage, Charlson Co-morbidity Index (CCI), cancer type, cancer stage, metastasis, and severity of abnormal finding. Variables that did not have a significant relationship with T1 in a univariate model were determined not to be confounders and were not included in the subsequent multivariate model (gender and CCI) Factors which were significantly associated with T1 on univariate analysis were BMI, age, health coverage, cancer type, cancer stage, metastasis and severity of abnormal finding (all p<0.05).

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Table 3: Participants Obtaining Definitive Diagnosis in One YearDays from abnormal findings to definitive

diagnosis (T1)

Comparison Navigated Total

Count Percent (%) Count Percent (%) Count Percent (%)

Up to 60 days 430 42.8% 78 57.4% 508 44.5%

61 days to 365 days 229 22.8% 46 33.8% 275 24.1%

More than 365 days 346 34.4% 12 8.8% 358 31.4%

Total 1005 100.0% 136 100.0% 1141 100.0%Note: Participants with pre-exisiting cancer or T1=0 are excluded from this table. Participants who had not obtained any diagnostic resolution by the end of the study are included in the >365 days group.

In an unadjusted univariate model the odds of receiving definitive diagnosis within a year was 5.5 times higher for Navigated participants as compared to Comparison participants with a 95% confidence interval ranging from 2.5 to 11.9. This means that 95% of similar studies would find the odds in that range. Participants who had private insurance (OR 3.1, 95% CI 2.0-4.9) or those had other combinations of coverage such as Medicare/ Medicaid, direct-care and CHS (OR 2.5, 95% CI 1.6-2.0) had better chance of getting diagnosed within a year than people who had only direct-care coverage. Contract Health Services eligibility was associated with a shorter wait for diagnosis because individuals with both direct-care and CHS eligibility had more than two times the chance of getting diagnosed within a year when compared with those who only had access to direct-care services.

When multiple independent variables are included together in a model, not all will continue to show a significant relationship with the outcome variable. Some (for example, cancer stage and metastasis) may be measuring a similar underlying factor and therefore will not contribute enough independent information to warrant both remaining in the model. Thus, the process of building a multivariate model involves removing some variables.

In this case, only three confounders remained significant in the adjusted multivariate model. The study arm (Navigated or Comparison) was of course retained along with health coverage, cancer type and cancer stage (Table 4). We also tested interaction terms, which explore the possibility of different relationships between one independent variable and the outcome for different levels of another independent variable. For example, while the main effect found was that those who had private insurance fared better in obtaining diagnosis, perhaps this is not true for each type of cancer when looked at individually. Interaction terms would allow the model to account for this type of relationship. However, upon testing we found that none of the interaction terms was significant in the model.

There were significant differences between Navigated and Comparison participants with respect to diagnostic resolution within 365 days. On average, Navigated participants obtained definitive diagnosis within 88 days (median 37 days), whereas Comparison participants waited 115 days on average (median 42 days). After adjusting for potential confounders, the odds of receiving a definitive diagnosis within one year of abnormal finding was 3.6 times higher for Navigated participants than Comparison participants. This difference was statistically significant, with a 95% confidence interval ranging from 1.5 to 8.9.

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Participants with cervical abnormalities waited longer (mean 200 days; median 107 days) to receive definitive diagnosis than participants with any other kind of abnormal findings. The group with prostate abnormalities also waited a relatively long time for diagnosis (mean 149; median 75 days). Participants who had abnormal breast findings were the quickest to receive a definitive diagnosis (mean 88 days, median 18 days).

These patterns were repeated in the adjusted model, which found the odds of receiving definitive diagnosis was 4 times higher for those with breast abnormalities, 1.9 times for those with colorectal abnormalities, and 3.8 times higher for other cancer abnormalities when compared to participants with cervical abnormalities.

Those who were eligible for both direct-care service and CHS waited the least time for definitive diagnosis (mean 96 days; median 35 days), and their odds of receiving definitive diagnosis within a year was twice that of participants with access only to direct-care services. The odds were higher still for participants who had private insurance (OR 2.47) when compared to those who had access to direct-care services only.

Those with regional/distant spread received definitive diagnosis more quickly (mean 65 days, median 24 days) and had 11.3 times higher odds of obtaining definitive diagnosis within a year when compared with participants who had non-cancer resolutions. Comparing just cancer cases, those with regional spread had 1.8 times the odds of being diagnosed than those with early stage, but this difference was not statistically significant.

This is in contrast to much of the literature on delays, where a shorter time to diagnosis is usually associated with an earlier stage diagnosis. However, that association implies a causal relationship in which the length of the delay causes a later stage diagnosis as the cancer has more time to spread.

It is possible that the small sample size and the delay between abnormal finding and enrollment precluded the ability to see this relationship; instead we may be seeing the opposite type of causal relationship in which patients who presented with a severe abnormality were rushed to a diagnosis quickly while those with less serious abnormalities were not treated with the same urgency.

Table 4: Factors Associated with Obtaining Diagnosis within One Year

Variable Referent Mean T1 in days

Median T1 in days

Adjusted OR

(95% CI)

p- value

Study Arm Comparison Participants

115 42

Navigated Participants 88 37 3.61 (1.47, 8.88) 0.013

Cancer Site Cervical Abnormality

200 107

Breast Abnormality 88 18 4.19 (2.88, 6.10) <.0001

Colorectal Abnormality 95 42 1.92 (1.29, 2.86) 0.0024

Prostate Abnormality 149 75 0.77 (0.42, 1.44) <.4065

Other Cancer Abnormality 61 34 3.75 (2.13, 6.63) <.0001

Coverage Direct-care Only 150 68

Direct-care and CHS Only 96 35 2.07 (1.26, 3.40) 0.006

Other Combinations (Excluding Private Ins.)

122 41 1.96 (1.19, 3.24) 0.011

Private Insurance 104 41 2.47 (1.52, 4.01) 0.0008

Cancer Stage Non Cancer Cases 116 42

Early Stage (No Metastasis) 115 47 6.32 (2.34, 16.7) 0.001Regional/ Distant Spread 65 24 11.3 (2.33, 55.0) 0.005

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Time from Initial Abnormal Finding to Definitive Diagnosis (T2)

A secondary research goal was to assess whether or not Navigators could reduce the time participants waited between a definitive cancer diagnosis and the start of treatment. There were 109 participants who had complete data on the date of definitive diagnosis and treatment start date. The secondary outcome variable (T2), a continuous variable, was calculated as number of days from the date of definitive diagnosis to treatment start date.

On an average, Navigated participants waited 43 days (median 30 days) to begin their first cancer treatment while Comparison participants waited 50 days (median 31.5 days) to start treatment.

Around 52% of Navigated and 49% of Comparison participants started their cancer treatment within 30 days of the definitive diagnosis. Within 60 days of their cancer diagnosis, 84% of Navigated and 79% of Comparison participants had started their treatment.

Most of the participants enrolled in the study had a non-cancerous resolution, and did not need treatment. As a result, the size of the sample for which T2 data were available was too small to complete further statistical analysis to rigorously assess the effect of Navigation on this time interval.

Based on the descriptive statistics alone we see that Navigated participants had marginally shorter wait times to begin treatment, but no conclusions can be drawn from this without being able to adjust for confounding variables and clustering effects.

These results suggest a good starting point for further research on the effect of Navigation during the T2 time period with a larger sample size.

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Characteristics of Participant Encounters

During the course of the study there were 2723 encounters at Navigation clinics.

Figure 25 shows the top ten encounter activities. Nearly half of all encounters involved patient education. This included clarifying a diagnosis or treatment plan, helping a participant weigh decisions and make choices about their care, and understanding side effects or how to take medications.

Communication between the various providers involved in a participant’s cancer care was also essential to Navigation, and was the second most common activity. Navigators often attended appointments with participants and placed phone calls to oncologists, surgeons and other members of the participant’s health care team to clarify the treatment plan and assure coordination of care.

Charting, the third most common activity, included documentation for the study and clinic purposes, as well as making sure that the clinic chart was complete by ensuring inclusion of

reports from outside providers.

Another common Navigation activity was listening and counseling. This does not include formal counseling or therapy, for which Navigators referred participants. Rather, this describes the general support and “shoulder to lean on” kind of service that Navigators are nearly always called upon to provide. This was the second most common Navigator activity.

Other common activities include referring participants to outside support groups or counseling, assisting with Contract Health Service (CHS) applications and eligibility, helping with side effects of cancer or its treatment, finding alternate ways to pay for care or to lower the cost of care, and coordinating appointments.

The variety seen in this list gives some insight to the wide range of topics in which Navigators must become expert, and the broad reaching impact of a cancer diagnosis on a patient’s life.

Figure 25: Most Common Navigator Activities

Base: All Encounters (n=2723). Note that percentages do not add to 100% due to multiples activities per encounter

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Three quarters of all encounters were less than half an hour long. These shorter encounters tended to be initiated by the Navigator, for example a routine follow-up call. Depending on the population, clinic policy and Navigator’s style the length varied between clinics.

Figure 26: Encounter Length Among Navigated Participants

Base: All Encounters (n=2723)

Figure 27: Encounter Location

Base: All Encounters (n=2723)

Most encounters took place at the clinic or through a phone call with participants. Again, this varied quite a bit between clinics. Other locations included local support groups, elders meetings, tribal facilities, and community centers.

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Patient Satisfaction Survey

Purpose

The survey was designed to address the research question “Can working with a Patient Navigator improve the quality of life and subjective well being of Navigated cancer patients?” and to determine the most common barriers to timely cancer care for this population, and how Navigators help patients overcome those barriers (see Objectives, pg 9). The results reveal the strengths and weaknesses of the Navigation model as implemented. Tribal or IHS clinics implementing the program can use these findings to modify program goals to better reflect the true needs of patients. The survey also measured participant satisfaction with their Navigator, as well as the value placed on certain Navigator attributes.

Description of Respondents

Most respondents fell between the ages of 50 to 59 and were predominately female (65%). Among those who responded there were more patients with breast abnormalities than in the overall group, while those with “other” cancer types were under-represented. Most were enrolled with the Navigator before they received a diagnosis (not all were diagnosed with cancer; some had a non-cancer resolution) and on average they had 28 encounters with the Navigator throughout their enrollment.

Qualitative Analysis

A total of 40 interviews were conducted with Navigator participants from three tribal communities (16 at Community 5; 12 at Community 6; and 11 at Community 8). See the methods section for a comprehensive description of the data collection and transcription process.

Navigator interview transcripts were first read in their entirety by the three members of the qualitative analysis study team. After careful review of the text for the underlying meaning, the study team highlighted five transcripts for 1) re-occurring themes, 2) issues that were surprising or that contradicted what they assumed, and 3) noteworthy or profound quotes. As a result of this simple review, a list of codes was generated and grouped together to begin the analytic process.

Transcripts from all interviews were prepared and formatted for use in Atlas.ti. Following this, a Hermeneutic Unit (HU) was created for each of the three communities, and each transcript was assigned to its relevant HU. The transcripts were then analyzed using an inductive approach consisting of open, axial, and selective coding. First, an open coding guide was created, reviewed, and refined into a final list of 39 codes by the study team. The lead member of the study team then coded all transcripts in Atlas.ti and transferred these open codes with corresponding quotes into a word document. This led the way to the more interpretive process of axial and selective coding, where the study team extracted broader themes to illustrate the role and impact of the Navigator Program in the lives of Navigator participants. Presented below are findings from the ten main themes found in the analytic review: 1) program description, 2) challenges and barriers, 3) cultural support, 4) decision making support, 5) emotional support, 6) financial support, 7) other support, 8) most important support, 9) program praise and criticism, and 10) program suggestions.

48Word Cloud generated from

participant interview transcripts

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PROGRAM DESCRIPTION

Navigator participants perceived the Navigator program as one which had provided important services to help support and guide them throughout their cancer journey. These included understanding their cultural beliefs, helping them to make decisions about their healthcare, delivering information and resources, connecting/communicating with health care providers, being there to check up on them/lend a sympathetic ear, providing financial assistance and referrals, scheduling or attending their appointments, and offering a variety of other types of referrals/support services.

• “A Navigator directs you in the direction you need to go according to what illness you have. She helps you find resources.” – Female, early 50s (Community 5)

• “He helped me with everything. He helped me get my appointments, get my referrals, he helped me with scholarship funding through different cancer programs. He helped me get any of the paperwork I needed. He did any of the faxing that I needed.” – Female, early 40s (Community 5)

• “He just kept in contact with me quite a bit and asked how I am and my health, and if I needed anything, let him know and it will be all taken care of… He cared and that was the main thing… he took time to explain things to you and talk to you.” – Male, late 70s (Community 6)

• “A Navigator helps you get to your doctor’s appointments, helps you with classes that you might need to take, they help you out with gas vouchers, information about things that are going on with you.” – Female, mid-40s (Community 8)

CHALLENGES & BARRIERS

Navigator participants faced many challenges which caused them to experience stress and anxiety throughout their cancer journey, including physical, emotional, financial, and transportation barriers. In addition, many participants had faced difficulties with finding/receiving appropriate care. The discussions analyzed here represent the respondents’ experiences both before and during navigation, while Navigators attempted to assist participants through these hurdles. In the section which follows, the quantitative extent to which participants felt Navigators were effective in addressing these barriers will be explored.

Physical: Some participants had experienced physical challenges such the inundation of too many tests or negative side effects from treatments.

• “I had to go to, I don’t know, five or six different kind of doctors to have different kind of tests and stuff because at my age they didn’t know if I could stand it or not. I was put through a lot of tests; more than I even dreamed was out there.” – Female, mid-70s (Community 6)

• “I think that was scariest part -- to have radiation therapy. I had 37 sessions.” – Male, late 50s (Community 5)

• “I took chemo for 6 months and it caused me to lose some of my toenails and my fingernails broke off and cramped and everything.” –Female, 90s (Community 6)

• “Once you’ve gone through treatment you’re still looking at least another at least another 2-year recovery to get your strength back.” – Female, mid-50s (Community 8)

• “So (the doctor) took them completely away and put me on another--tramadol or something like that instead. And I ended up in the hospital as a drug addict and I was very upset about that because I’ve

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never been a drug addict in my life, I have always worked all my life and took care of my family.” – Female, middle aged (Community 6)

Emotional: Other participants had struggled greatly with mental and emotional barriers such as not wanting to go out in public, feeling overwhelmed with the amount of information they needed to learn, or experiencing a deep sense of fear and isolation. While some participants praised the emotional support they received, others suggested the program should offer more counseling referrals and emotional support.

• “I just had this thing about not wanting to go out in public, because I had probably lost about close to 40 pounds and I just didn’t have any energy, no desire to get up and even move and go out anywhere to leave the house.” – Male, late 50s (Community 5)

• “I guess the education part is a really big part of it… Really a lot of the stuff I ended up reading just kind of caused me more stress and anxiety.” – Female, late 20s (Community 5)

• “I wasn’t contacted for any type of follow-up examinations and was kind of just left on my own. That’s where my whole life just crumbled apart where I was; my mom had to move into the house because I was so scared to go to sleep by myself, because I was afraid I wouldn’t wake up. I started having panic attacks. Anytime I felt any type of pain or stress in my chest, it just sent me into a panic attack. I lost a lot of sleep. I actually failed out of school because it was so much on my mind.” – Female, late 20s (Community 5)

Financial: Many participants had also faced problems with finances, including a lack of insurance or an inability to pay for services, fear of ruined credit, frustration with the lack of coordination between agencies, and feeling overwhelmed with paperwork requirements to receive financial assistance. These issues usually began before the Navigator became involved, and were addressed with varying degrees of success by the Navigators, depending on the individual circumstances.

• “Well, I was diagnosed with lung cancer and had the surgery and everything and down the line my insurance ran out. I had no means of support for a while except from my family and that was very difficult for me.” – Female, middle aged (Community 6)

• “Prior to me moving back up here, because I was gone at school, I didn’t have health insurance. When I first out I was sick and I was in the hospital for 5 days, I think I had about $30,000 in bills.” – Female, early 40s (Community 5)

• “I just worry about my credit… I had an appointment in April and I knew it hadn’t been paid because they had sent me a letter telling me they hadn’t been paid and that they were going to turn me over to col-lections and I felt a little bit nervous about going down there for another follow-up treatment.” – Male, age missing (Community 5)

• “That’s been a hassle. One don’t want to pay and then the other one will pay and it’s just been a trip getting things taken care of.” – Male, mid-50s (Community 8)

• “Sometimes the insurance company in (local town) would call and say, “Well we paid our share why hasn’t (tribe) paid their share?” I think there was a few times I had to advise them that there needs to be better coordination between the two, the insurance I carry on the worksite and plus the Indian Health Service coordinate them. There seems to be a little less coordination between the two of them.” – Male, late 50s (Community 5)

• “I think one of the tests I went to get the mammogram, I think it went to the Credit Bureau and it was never paid for… The thing I didn’t like about it, is that you had to write a report to some people if you had cancer, you’d have to write some kind of paper to some people to get the help, financial help. If you’re sick and you have cancer, I don’t know if you would feel like writing a report.” – Female, early 50s (Community 5)

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• “I call it in Indian language “money scent”. They want that money. They cut me open and bill me with $8000. To radiate me was $66,000 I do believe for the radiation treatment… I told him I didn’t want him (the doctor) around, I didn’t want him there, because all they do is get that overtime, they are there just to get that money. They don’t care about the patient, they wait till that patient is ready to die and then they want to be there just to get that overtime. That’s what I hate about these doctors over here.” – Male, late 50s (Community 5)

Transportation: A few people talked about the lack of transportation services available to them, making it more difficult for them to commute to their many health care appointments.

• “Keep having to do repeated trips, and had to go back over to [city – 1 hour drive]… I didn’t really access transportation, I didn’t know I could in the beginning.” – Female, late 40s (Community 8)

• “We’ve had some problems a few times, like we broke down in [city – 2 hour drive] and we had to use our own money to fix our truck to come back home, which was pretty tough because we were in a tight spot and they don’t provide rides down to [city – 2 hour drive]. It’s a one day visit there and then go to an appointment and come back, and they won’t provide any services of any sort.” – Male, mid-50s (Community 5)

Finding/Receiving Appropriate Care: There were many participants who faced difficulties with finding or receiving appropriate care. Some had been mistreated or misdiagnosed by their doctors or had struggled with getting their appointments scheduled in a timely manner. These participants felt upset and frustrated that they’d had to fight for appropriate care at a time when they should have received support and guidance.

• “I had a problem getting a visit to the doctor, they tried to set me back 90 days or better… I said “I don’t think I’ll be able to make until 90 days,” so there was this almost like an emergency, I still had to wait, by that time my diabetes was running away with me, it was almost ruining my kidneys.” – Male, 60s (Community 8)

• “I had to get in a big fight and an argument with them to get me over there to find out what was wrong with me and that was pretty sad that I had to go through that. And see I was 56 years old when I was diagnosed with cancer and (local clinic) had never had me over there for a colonoscopy… we had to wait until I was bleeding severely and still had to argue with them to get to go.” – Male, 50s (Community 8)

• “This could have been found, this could have been prevented, it never had to have spread… They could have got that and biopsied it and I never would have had to go through this. So I’m disappointed with that company… I do know of women that have had to go in for a mammogram and had to wait and wait and wait and wait, they only have one woman that does it up there, one.” – Female, mid-50s (Community 8)

• “At one point there was a coordinator at (hospital) who was my only connection to doctor appointments and chemo appointments and since I worked full time my scheduling was critical because I didn’t want to run out of time… And by my complaints she finally was gone. I don’t know if it was only by my complaints but she was a nightmare.” – Female, middle aged (Community 6)

• “I think the main thing was the follow-up, it was hard to get follow-up afterwards on whatever was going on with you… like afterwards, like I expected I guess the doctor to call me and say “hey, can we schedule to discuss your results?’ Or something like that, so the follow-up I didn’t think was very good.” – Female, mid-40s (Community 5)

• “I just blew up because prior to getting cancer I had to get mad at the doctor over there because I wanted a PSA test. He wanted to give me a blood test, a urine test, to find out if I was smoking marijuana… I said I didn’t want that, I wanted a PSA test, a blood test to find out what my count was. He didn’t want

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to give me one.” – Male, late 50s (Community 5)

CULTURAL SUPPORT

Some Navigator participants described cultural traditions and ceremonies as a vital part of their healing journey.

• “What they do is they bring in all your past spirits, medicine men, your elders and things like that… I went to the ceremony you can actually feel the cancer being drawn out of you… So I don’t know if it was the radiation that took it out or the ceremony -- and I kind of think it was the ceremony that took it out… So it’s all in your belief. I’m a Sun Dance believer and I will always Sun Dance all my life.” –Male, late 50s (Community 5)

• “They sang Peyote songs and he did a ceremony with the Peyote and then after that he had me say how I felt about the cancer and pray… It did help me. I did take the pill and I’m still taking it, but I do the white man’s way and the Indian way. I’m in remission now.” – Female, mid-60s (Community 5)

Most of these participants did not feel there were any cultural barriers to receiving care. They believed that although practicing cultural traditions had been difficult in the past, today’s health care systems were generally inclusive and accepting of cultural beliefs and traditions.

• “Growing up being Indian was taboo… our little ways of doing things were always looked down on. So we did them off by ourselves. It’s more open nowadays. We can be who we want to be.” – Female, middle aged (Community 6)

• “I think health care systems are changing a little bit where they are letting people be more included.” –Female, late 50s (Community 8)

• “Things my family wanted to bring in were never questioned (cultural objects/ceremonies). So I don’t think it ever affected me. Years ago I’m sure it would have.” – Female, mid-70s (Community 6)

• “The hospital staff, they were pretty open to the fact that [my cousin] was going to be down there and they had no problem whatsoever. They just kind of allowed him to come on in even though he burned cedar and whatnot and they realized the fact there was going to be smoke in the room. They understood it and they seemed they were pretty open to it.” – Male, late 50s (Community 5)

Only one participant felt he had faced discrimination from a doctor regarding his traditional beliefs. The Navigator program had provided this participant with support and validation for his cultural beliefs and had encouraged him to pursue whatever he felt was a valuable part of his healing journey.

• “Well the doctor was really insulting. That’s how come I didn’t get along with the doctors over here. Dr. ***, he didn’t believe in it; he called it Voodooism… He only believed in the medical, the pills and stuff like that. But your Navigator he had a different view. He was willing to say, “Yeah go ahead, I’m just here to help you along in any way I can, whether that be what your doctor is going to recommend, what the doctor that cut you open recommends, or the radiation doctor recommends. They can help you with that and their pills, and if you want to go through your Indian way that is your option.” That’s what the Navi-gator told me.” – Male, late 50s (Community 5)

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DECISION MAKING SUPPORT

About half of Navigator participants who had made decisions on their own about their health felt comfortable with it because it made them feel independent, they were used to it, or because they thought it was just something they had to do in life.

• “I’ve always had to make decisions about my healthcare by myself. It makes me feel independent because usually that’s what I do. – Female, early 50s (Community 5)

• “Well, I have been fairly comfortable with that because I am accustomed to researching and looking at options.” – Female, late 50s (Community 8)

• “Well at that time I really didn’t know any different, I just figured that was the way things were done.” –Female, early 70s (Community 6)

Others felt that making decisions about their health was a process that made them feel confused, uneducated, scared, or overwhelmed.

• “Yeah, in that program I did have to make decisions about my healthcare choices, it was kind of confus-ing because some of the choices that were put before me were confusing.” – Female, late 20s (Community 5)

• “My healthcare choices concerning this disease: I was afraid, I was very scared.” – Female, mid-40s (Community 8)

• “Because you don’t know, you’re uneducated obviously because you’re not familiar with the disease that you have… it’s like starting from scratch.” – Female, mid-50s (Community 8)

• “Once I got the diagnosis it took a while for it to sink in and then I was overwhelmed quite a bit.” – Female, late 40s (Community 8)

Those who had the support of family and friends had an easier time making decisions, knowing they had someone to turn to for extra help or advice. Participants who did have a strong personal support system to rely on generally needed less emotional support from the Navigator.

• “I feel good. If I need my kids I know they’re there for me to help.” –Female, late 40s (Community 5)

• “My husband, my sister, my daughter, my son, daughter-in-law--I have a very, very strong support system.” –Female, middle aged (Community 6)

• “Well, my wife, we’ve been married 45 years and she helps me make decisions. We talk together and we communicate really well.” – Male, late 70s (Community 6)

Regardless of whether or not they were comfortable making decisions on their own, participants agreed the Navigator program provided valuable information and education, answered questions, and explained things they didn’t understand. They felt that this type of support and assistance from the Navigator had given them the confidence to make more informed decisions regarding their health and treatment options.

• “She gives me a lot of information and if she does not know, she will find out and call me back, or put me in touch with somebody that can help me. You know, it just kind of gives you a little bit more confidence and security.” – Female, mid-50s (Community 8)

• “She tells us about new treatments that people are taking, that some people are trying, alternatives to what we are going through then she tells us some alternatives to that.” – Female, 70s (Community 8)

• “She was able to present the kind of scenarios that have happened in the past with other patients, without

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mentioning names or anything, but kind of scenario things that have happened.” – Female, late 50s (Community 8)

• “They just give you care and it makes you aware of all the different options you have, and different medicines you can try, and new information mostly. Makes you aware of your body.” – Male, late 70s (Community 6)

• “He kept me in the loop of everything, what he was doing, who he was talking to, what was said and it was much easier than it was the first time around. I felt more involved in what was going on through him.” – Female, early 70s (Community 6)

• “He definitely made you want to take care of yourself, you know… I’ve never been sorry that I took his advice and it was good in my mind that I’ve done this.” – Male, late 70s (Community 6)

• “He was able to get more information for me or tell me where to look for the information to help me make my decision -- that was a helpful thing.” – Male, late 50s (Community 5)

• “He showed me copies of what the prostate looks like, and what’s down there and what we should be looking for… I kind of feeling awkward talking to a woman about it, guys don’t like to talk about down there in their prostate area, but the guy was good to help me out and kind of watch and observe.” – Male, 30s (Community 5)

• “The Navigator gave me books and information on the chemotherapy and the radiation and what to expect and how to get a hold of things and to keep track of things.” – Female, mid-50s (Community 8)

Additionally, the Navigator supported participants to effectively communicate with their providers. For example, they provided examples of questions to ask, tools for keeping track of appointments and information, and support on getting a second opinion if desired.

• “She told me questions to ask and to be sure to ask them any kind of questions that I needed to know, not to be afraid to ask them anything or to say anything to them because they are being paid money to take care of us.” – Female, mid-50s (Community 8)

• “The Navigator was able to explain in common terms instead of professional terms, because you know how doctor’s words are. He could get by and write down and tell you what they were going to do and make you feel a lot more at ease. You wouldn’t be as afraid.” –Female, middle aged (Community 6)

• “She did tell me to ask about if it did come up cancerous and what needs to be done just for the follow-up and she did tell me questions to ask in case something did come up. She did help me in a way because it was nerve wracking.” – Female, late 40s (Community 5)

• “When I was first supposed to be starting chemo, (the Navigator) showed up. He was going to go with me because it was that doctor treated me really bad… We ended up filing complaints on the doctor and he went ahead and took those and said, “I’ll make sure they turned in where they are supposed to go.” He just totally supported us on our decision for that and that’s when I got transferred up to (local hospital).” – Female, early 40s (Community 5)

• “I am having problems with a doctor that I had before when I had the breast cancer, and she checked into it and found me another doctor to go to for a second opinion. She just has been on top of everything.” – Female, mid-50s (Community 8)

For participants who needed extra support communicating with providers, the Navigator was available to attend appointments with them during which he/she talked to the provider, took notes, and explained anything of concern to the participant.

• “The other one, like the first one I had she went to every appointment with me. She wrote stuff down and

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helped us understand stuff.” – Female, young woman (Community 6)

• “One Navigator that I know personally has helped me by taking me in hand and going with me to a doctor within the state who understood the problems as to what I had and he escorted me there and back and finalized the problems, which was a big help.” – Male, mid-80’s (Community 6)

• “It made it much easier to have a Navigator with me because the Navigator knew what was going on, where the doctors usually are dropped right in the middle of the little thing and don’t quite see the whole story. So they can fill them in.” – Male, mid-80’s (Community 6)

EMOTIONAL SUPPORT

When it came to their mental and emotional health, the Navigator made a world of difference to most participants. Having someone to talk to, someone who cared, and someone on whom they could rely -- these things truly helped to make their cancer journey easier. For these participants, the Navigator was a supportive and reassuring force in their lives that helped to make them feel more hopeful about their situation.

• “It was easy to share feelings with him…I could talk to him. I could vent. So he was a great person to vent to.” – Female, middle aged (Community 6)

• “Being able to talk with him made a world of difference for me.” – Female, middle aged (Community 6)

• “It helped me to feel less stressed because of the fact that he was there and I had somebody to talk to.” –Male, early 80s (Community 6)

• “I could see him and he’d know… just being in his presence settled me down a little bit. I was not alone.” – Female, middle aged (Community 6)

• “He kept after me to take care of myself and called me pretty regular, called my home, which I really appreciated. Makes you feel that somebody does care for your health.” –Male, late 70s (Community 6)

• “He was close by. So if when I came out if I was disturbed or if something was wrong he was right there to discuss things and to cheer me on or make me feel better.” – Female, mid-70s (Community 6)

• “Because when you’re dealing with cancer, you need a lot of people to support you. She fits right in and provides that support.” – Female, mid-50s (Community 8)

• “Sometimes I knew from talking to her that I was doing the right thing. I was on the right track.” – Female, 70s (Community 8)

• “I think we would be lost without a Navigator. It’s nice to have one person right there that you know you can count on, and she’s going to be there.” – Female, mid-50s (Community 8)

• “I think it’s extremely important when you are real sick like that. Because you don’t need somebody trying to argue with you. He would always listen and he was real open.” – Female, early 40s (Community 5)

• “He made me feel like I was a person and that I was important. When I left here, I left with some really good thoughts about myself and about the program. I was really glad that they had the program and the assistance available.” – Male, age missing (Community 5)

The Navigator program also provided participants with referrals to support groups. While only a few took advantage of these referrals, those who joined support groups felt that talking to other people with cancer gave them hope and made them feel they were not alone.

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• “Just talking to other people with any kind of cancer--breast cancer or colon cancer or whatever. That helped. Sitting across from somebody who went through it and is still here, that helped.” – Female, middle aged (Community 6)

• “There were so many different people there at the support group that had the same experiences but they kept up with their chemo and stuff and their quality of life was still good… just to have this group that we had coming together and talking about their experiences made you realize, well, you’re not alone.” – Female, middle aged (Community 6)

• “It seemed like every door was closed until I did meet up with the Navigator and the support groups and they really helped me, not only financially but with my well being. Because I was very depressed and in a lot of pain.” – Female, middle aged (Community 6)

FINANCIAL SUPPORT

For participants who struggled with a lack of financial security, lack of insurance, or who felt overwhelmed by paperwork, the Navigator helped them by filling out paperwork, making phone calls to insurance companies, and providing referrals for financial assistance. For those who needed it, the Navigator also helped to secure some much needed financial assistance from insurance companies, foundations, or the state.

• “(The Navigator) would work on it a lot for me was the medical bills. Those were falling behind and then they would send me all those letters threatening me to send me to collectors.” – Female, early 40s (Community 5)

• “In my case (the Navigator’s help) made it much easier because I was so tired of doing paperwork and understanding and filling out the same thing over and over and over.” – Female, middle aged (Community 6)

• “It seemed like everybody wanted insurance and money up front and I had none of the above because I had run out. But with his help I was able to get medical assistance from the state, Medicaid.” –Female, middle aged (Community 6)

• “She did refer me to people that would pay for the appointment and stuff because I am not contract eligible [Contract Health Services (CHS)], so she referred me to that woman’s group somewhere in (nearby town) that paid for it. So that was a lot of help.” – Female, early 50’s (Community 5)

• “She actually went through a couple of cancer foundations and that’s how we paid for a lot of the mammograms and stuff that I had to do. Yeah, so that’s when she found this cancer foundation that paid for me going in and getting a mammograms and ultrasound.” – Female, late 20s (Community 5)

• “He dealt with the insurance company and got them to recommend life treatment. I was very pleased.” – Female, early 70s (Community 6)

A majority of participants were directed to organizations which provided other types of simple financial assistance, such as housing, housework, or transportation support/gas vouchers. This assistance, although small, made a big difference to many people.

• “I needed help right away with gas for getting back and forth and there was a company here in [local town] that helps contributes funds for gas and stuff, but I got a hold of (the Navigator) here at (local clinic) and she got right ahold of them and they sent me a check right away.” – Female, mid-50’s (Community 8)

• “He really helped as far as financial, because the Tribe said they were not able to basically pay for my travel every week, but the travel check I got once a month and then the scholarship funding… but it did

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help as far as me being able to pay for my motel rooms and stuff like that when I had to go stay up there.” – Female, early 40s (Community 5)

• “She helped me and my family find a hotel to stay in so we could be in [city – 2 hour drive] and be close to my doctor’s place so we didn’t have to get up so early and that was really good.” –Female, young woman (Community 6)

• “He did make several phone calls for me because at the time I was looking for help to come to the house because I knew my daughter was going to have to back home and go to work. He called state agencies and things to see if he could find help for me and he did find help for me.” – Female, mid-70s (Community 6)

• “She got help with transportation like riding the bus to and from the hotel and the hospital. They paid for our gas to go up to [city – 2 hour drive] every once in awhile because she got gas vouchers from the tribe.” – Female, young woman (Community 6)

OTHER SUPPORT

The Navigator program helped many participants to schedule and keep track of appointments, tests, and treatments. This scheduling assistance, as well as the provision of daily logs/journals, provided a great deal of relief for those who faced difficulties trying to schedule and keep track of a multitude of appointments.

• “He got all the appointments set up for me, for going through over here. Like say all those 37 appointments for the radiation treatment was already set up and approved over here. For the operation prior to that, it was all set up by him.” – Male, late 50s (Community 5)

• “If I needed to get appointments, say I needed to get one sooner or something, he would work on trying to find one, because he knew I was really sick.” – Female, early 40s (Community 5)

• “He would work very diligently on my schedule so he would check in with me, is this going to work if you have a CT scan and a doctor’s appointment and chemo? So he was outstanding in that area.” – Female, middle aged (Community 6)

• “He had a lot of reading material, daily logs. Because I still get confused--it’s going on six years but I get my meetings and schedule all confused and I have to be very careful and he helped me a lot with that.” – Female, middle aged (Community 6)

• “Well he gave me a journal to keep track of what I had in my healthcare and my doctor visits and who went with me and what I found hard or what I found fairly easy to refer to so when he talked to me, I would know, I’d have my little notes that would tell him what I needed to work on or what he needed to work with me for or what he could do to help me.” – Female, mid-70s (Community 6)

While most participants received referrals to various support services from the Navigator program, only a few took advantage of these including rehabilitation services, hair/makeup services, and a handicap parking pass.

• “There were several of them. One was hair/makeup the other one was just small groups talking about your cancer and stuff.” – Female, mid-50s (Community 8)

• “(The Navigator) got me connected with the cancer program for getting services at the Rec (Recreation Center) with a trainer to help me develop a program to rebuild my endurance. Which was my greatest concern because I wanted to get back to work.” –Female, late 50s (Community 8)

• “She helped me to find a wig. When you’re a girl and you get cancer at such a young age and your hair falls out, you want to have hair and be normal. She helped me find a wig and that was something

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really big. It just seems really small because it’s just hair, but it was really big.” – Female, young woman (Community 6)

The Navigator also helped a number of people with getting their medication and prescriptions and making sure their referrals were in place, saving them a great deal of time and energy.

• “I just didn’t have any energy, no desire to get up and even move and go out anywhere to leave the house. They helped me a great deal on that matter. (The Navigator) was in contact with them setting up appointments and stuff, seeing if there was any medication and stuff that I needed or anything like that.” – Male, late 50s (Community 5)

• “He did go down sometimes and got my prescriptions for me. I’d give him a check and he’d take the prescription down and if I wanted him to pick it up and he would bring it by for me at work.” – Female, mid-60s (Community 5)

• “He made sure all my referrals were in place. I’d call him and tell him they’re calling me, I’m going to a CAT scan, can you make sure my referrals are in place? He would always make sure they were in place.” – Female, mid-60s (Community 5)

MOST IMPORTANT SUPPORT

Some participants stated that the most important support they received from the Navigator program was financial: making calls to the insurance company, dealing with paperwork, or receiving simple types of financial assistance such as transportation assistance/gas vouchers. Others said it was the information and resources provided that helped them the most.

• “Financially, it would help. And when I needed help, like out of state, he would call me, help me do, like with referrals or with a room I couldn’t find and need help beyond that too.” – Male, mid-50s (Commu-nity 5)

• “Someone to help me with all the paperwork and that was the doctors mostly, for me anyway.” –Male, mid-50s (Community 5)

• “Most important thing to me was, well everything was, but especially the financial part because I didn’t have the resources to pay for that.” – Female, early 50s (Community 5)

• “Probably the pay voucher helped me out with the fuel.” – Male, mid-50s (Community 8)

• “At that point it was transportation.” – Female, late 50s (Community 8)

• “The biggest I assistance I had which was really important at the time was helping with transportation and getting to my appointments. But also I got information about resources such as after I got done with my radiation and treatment I was able to access the Rec (recreation center) to build up my endurance.” – Female, late 50s (Community 8)

A majority of participants, however, felt that the most important part of the Navigator program was that the Navigator was responsive, respectful, available, communicative, dependable, knowledgeable, positive and caring. Having someone to talk to who understood what they were going through and “a shoulder to lean on” helped participants to feel more secure and positive about their cancer journey.

• “I think the most important thing to me in my situation was knowing that he was there and is going to pick up the pieces so to speak, make sure nothing falls through the crack, everything is going to be taken care of if you forget to do something.” – Female, mid-60s (Community 6)

• “I think the attention that each and every one of us probably received… If you have a very caring person like we did, he would do anything and everything for you, all you had to do was give him a call… I think

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that makes all the difference in the world. Some people are just personally involved.” – Female, mid-70s (Community 6)

• “They just made me feel like they were concerned about me as a person. They just seem to have a caring attitude. That they actually do care about you and that you’re just not a number.” – Male, age missing (Community 5)

• “He was always there, he was always prompt. Any way he could help us he was willing to help us. We never had to wait on anything or remind him twice. We’d always call with the information and he was even willing to bring it to the house if I needed to sign papers or he’d find out.” – Female, early 40s (Community 5)

• “I think just being there to help us through; when you first find out, how shocking it is and how they explain things. We went through the pamphlet and he was there to help if you needed to talk.” – Female, mid-60s (Community 5)

• “She helped me, when I was having trouble, and I wasn’t sure what to do about my doctor or anything, and I didn’t feel right about the treatment and stuff. The healing is a lot of it is the way you feel. If you are positive or whatever, and she just gave me a positive feeling and help me deal with it. She just basically helped me with everything. If I ever needed anything, or had any doubts or questions, to give her a call or talk to her when she came to my house. She made me feel more secure.” – Female, mid-50s (Community 8)

• “Well she tries to reach out to everybody. She includes everybody no matter who it is, no matter where they are.” – Female, 70s (Community 8)

PROGRAM PRAISE & CRITICISM

A majority of Navigator participants praised the program, saying they thought it was “excellent” due to the attention to detail, timely response to requests, help with finding information, and the respectful and caring attitude.

• “I think it’s a wonderful program. Just mentally it’s quite a relief really.” – Male, age missing (Community 5)

• “I think he helped people and I think I went to a couple of funerals that I’d seen him at too, which showed he cared out of respect for the families.” – Female, mid-60s (Community 5)

• “It’s excellent where it deals with referrals and all that other stuff; and education on if one had cancer or some kind of illness.” – Female, early 50s (Community 5)

• “The attentiveness to detail on--I’ll just call it day-to-day operations on appointments, scheduling appointments, making sure pre-meds were there, making sure confirmation on appointments and tests. The Navigator just followed through on all of it in a very, very timely fashion which just took all of that off. I didn’t have to worry about it. So it was outstanding.” – Female, middle aged (Community 6)

Many participants also felt that the Navigator program went above and beyond to help them through their cancer journey, describing its role as “invaluable” in their lives. They believed that the Navigator program was an important presence to have within the Tribe and community and an important addition to the cancer services.

• “I think it’s an outstanding program, I really do. Unless you have had cancer and been through it--been through it for a period of time sometimes, the littlest assistance goes a really long ways. Whether it’s making sure your meds are there or calling us up to see how treatment went. I mean, those types of things are invaluable. Truly.” – Female, middle aged (Community 6)

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• “I’m not one to make speeches, but I got up in front of everybody and told them that they had a great program and that I felt that the Navigator had actually saved my life. Even my husband and family and friends felt the same way because it takes special people in this world to be able to go out and be with so many different people and to be able to hold up.” – Female, middle aged (Community 6)

• “He was always willing to give me something if I needed or find out something else for me if needed or if I felt like it would help. He was a very good caring person. So I think your Navigator would be one of the best things a person could have if they had one like we did.” – Female, mid-70s (Community 6)

• “I just think that before we had her, it was terrible. You were just kind of stuck out there on your own because even though you have cancer group and stuff, and we could go to that, but having one right on the reservation and people can go to the clinic, it is much nicer and easier for us.” – Female, mid-50s (Community 8)

Most participants said they would definitely recommend the Navigator program to others, calling the program a “lifesaver” and something that people in the community should know about so that others can take advantage of the program.

• “If somebody became sick, I definitely would recommend them to the Navigator Program because they would educate them and hopefully more orally than reading material. But it would help them, referring them and stuff like that, it really helps if the person didn’t know where to go or what to do or didn’t have education about it, that would definitely help a person to have this Navigation Program with.” – Female, early 50s (Community 5)

• “I would definitely recommend the Navigator because in my situation I think the Navigator was a lifesaver in helping me get my medical and my assistance and talk with others about my history and made me feel, I don’t know, that because I had cancer didn’t mean that I wouldn’t be able to have a life.” – Female, middle aged (Community 6)

• “I think if you had a sickness, and mine is cancer, or anything related to it, something that is that severe, I think you should let your friends know about the Navigator program so that they can take advantage of all the different options and the care that they can get from the Navigator program.” – Male, late 70s (Community 6)

There were only a few criticisms regarding the Navigator program. These participants felt they hadn’t received enough information, hadn’t had a lot of contact with the Navigator, or were confused about what kind of services the program offered.

• “Throughout that whole process I didn’t feel like I got a whole lot of information. It was just a really confusing time.” – Female, late 20s (Community 5)

• “I was just going to say that she made a few phone calls for me but not--that was really the limit of it, is making a few phone calls and getting me pamphlets that had lists of resources for me.” – Female, late 50s (Community 8)

• “I have had to check back repeatedly to get a gas voucher. I didn’t know that there were other services available, like for food.” – Female, late 40s (Community 8)

• “Well, I haven’t seen her that much, maybe twice or three times. I’m not saying it’s her fault, it’s probably my fault too because sometimes she would call and I’d not be here to answer back.” – Male, early 60s (Community 5)

• “I’m not sure what the program’s even about, to tell you the truth. I’m not out that much. I guess (the Navigator) hasn’t explained to me that much about it that I can remember.” – Male, mid-50s (Community 8)

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PROGRAM SUGGESTIONS

Participants had several suggestions for the Navigator program including more financial services or resources, more medical knowledge, targeting high risk groups, more home visits and referrals to counseling services, more collaboration with health care providers, more cultural support, and expanded staff and advertisement of the program. They also wanted to see the program continued in the future.

Financial: Regarding the expansion of financial support, participants stated that it should be able to offer more referrals and resources, or help with travel expenses and bills. Some suggested more financial support so that people going through cancer treatment could have the ability to stay home from work.

• “Oh, help... in my bills I send in, I guess. Have them take care of it.” – Male, early 60s (Community 5)

• “But it’d be excellent if we probably had more money available or maybe more resources.” – Female, mid-40s (Community 5)

• “Maybe for people that are not contract eligible [Contract Health Services (CHS)] to maybe work a little harder on referrals and resources maybe for payment and for the financial part of it.” – Female, early 50s (Community 5)

• “I went to work every day. If there was a possibility that I could have stayed home even a half a day, if there was something financially available for a patient who wants to work but can’t make the whole day, that through their employment, there might be some kind of funds available or not the threat of losing your job or something.” – Female, mid-50s (Community 8)

Knowledge: One person suggested that the Navigator have more medical knowledge so that they could help interpret difficult terms for participants.

• “If [the person] promoting the Navigator services were more involved with the medical field so that interpreting things would be a little easier for them.” – Female, late 50s (Community 8)

Target High Risk Groups: Others believed the Navigator program should make a concerted effort to target and raise awareness for high risk groups such as men and youth.

• “Somehow you have to get the word out to all of the men--mostly men--that are in denial and don’t come to our meeting and don’t try to get help quickly enough to help themselves. Somehow we’ve got to get out the word more to the people for treatments. Early treatment.” – Female, 70s (Community 8)

• “I think they should push counseling more onto kids who get sick at such a young age… because I didn’t do counseling when I had cancer, but I really should have… because when a kid is going through something dramatic like that and it changes your whole life, counseling should be something that they look into a lot. Counseling and support programs.” – Female, young woman (Community 6)

Home Visits/Referrals/Collaboration: Participants also wanted to see more home visits, more referrals to emotional support services, more collaboration with health care providers, and an emphasis on verbal patient education rather than written patient education materials.

• “Probably I would think more home visits… I guess just being supportive, being real supportive because people are probably at their lowest low going through whatever, and just offering the best advice, I think being there for them is real important.” – Female, mid-40s (Community 5)

• “I guess the only thing is just letting people know about their options. I didn’t know that going to a

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support group was even an option for me. I didn’t know that I could get emotional support. I guess for me the only thing about the Navigator Program is just getting more education on the disease itself. I just felt very, very lost.” – Female, late 20s (Community 5)

• “Maybe more working with doctors and the Navigator at the same time, because I didn’t see too much of that. Maybe he would ask the doctor and the doctor would get back to me, but I wouldn’t get too much feedback from the Navigator that he had talked to the doctor.” – Female, mid-50s (Community 5)

• “I think a person can make it easier if there was more information or more verbal information instead of reading material information. Because a lot of people don’t like to read a whole bunch of stuff; when you give people a whole pamphlet or booklets or everything, I don’t think a lot of people want to read that if they think they may have cancer. I think the person wants to hear it from somebody’s mouth and it seems more caring.” – Female, early 50s (Community 5)

Cultural Awareness: A few participants emphasized the importance of the Navigator as a person who understands the cultural traditions of Native people. They also suggested more cultural resources be emphasized as part of the program.

• “I think if you’re going to be a Navigator you really need to understand the cultural traditional and maybe the spiritual side of the native people, and maybe integrate the program more towards that type… so I think maybe that side needs to be built upon a little more maybe, just more resources that maybe are culturally pertinent to the program.” – Female, mid-40s (Community 5)

• “I’d like to see more cultural stuff.” – Female, mid-50s (Community 5)

More Staff/Advertisement of Program: Some participants wanted to see the Navigator program expanded with more staff, and suggested advertising the program with more promotional materials such as handouts, brochures, and websites in order to help spread community awareness on what type of services are offered by the Navigator program.

• “I don’t know how big their workforce is or how many people are involved, I think if they do have a small force they should probably include more people to be on that program. I guess maybe the other thing probably too is the fact is I didn’t know that they were really available until I had this problem and I was in the hospital and I had her come and contact me at the hospital. I didn’t realize the fact that they even had a Navigator Program and maybe it’s an area in which it needs to be advertised more or make people more aware of the fact that they are available.” – Male, late 50s (Community 5)

• “I think it’s important for cancer patients and being a cancer survivor, to know that there is a Navigator Program. Maybe having some type of handout, pamphlet, brochure, contact numbers, e-mail address, and then maybe in the brochure having websites that are relevant to maybe not only services here at (local clinic) but in the broader United States that are specific to different cancers.” – Female, late 40s (Community 8)

• “It’d just be nice to know all the things that are out there that the Navigator could provide me with or give me information to and about things and everything we’ve talked about.” – Male, mid-50s (Community 8)

Program Continuation: Several participants expressed that they missed the Navigator program and wanted to see it continued in the future.

• “I’d like to see them continue with the program.” – Male, age missing (Community 5)

• “I think it’s an awesome program. I am sorry we don’t have it right now. I was a big supporter of the program.” – Female, mid-60s (Community 6)

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Quantitative Findings

Most Common Perceived Activities

Respondents were asked which of the services that the program intended to provide were ones they actually used. As seen in this figure, the most common was help with referrals, which about three quarters of the participants did use. As most cancer related diagnostic and treatment services must be referred out it is not surprising that this is an area where patients need assistance.

Help with transportation, scheduling appointments, communication and accessing support groups/counseling were also common, with slightly more than half of participants using each of these services.

The top three services all fell under the broad category of logistic barriers, which may reflect not only the need but also the way these activities are recalled; as these are more tangible services, they may be more readily recalled than, for example, listening

and emotional support.

Interestingly, some of the services which were anticipated to be most needed were not used by many in the survey - for example, very few required help with housing or attendance of appointments, although as discussed in the qualitative analysis, schedule of appointments was something participants valued.Additionally, one of the areas which was anticipated to be important to patients from American Indian tribes was accommodating cultural and modesty needs. Nearly all respondents reported no need for special help with these issues, with a few explaining that while they experienced misunderstanding and intolerance for traditional Indian medicinal and spiritual practices in their childhoods, these days it is accepted. As one participant put it, “It’s more open nowadays. We can be who we want to be.”

The activities recorded by the Navigators differed somewhat from what their participants’ perceived as the most common activities. For example, Navigators reported charting, patient education, and listening as common activities, while surveyed participants did not mention these. Services that were perceived by both the Navigators and participants as most common were help with referrals, scheduling and attending appointments, communication, help with paperwork and financial assistance and referrals to support groups or counseling.

For the most part, male and female respondents did not differ very much in their use of services. However, women were more likely to work with Navigators on communication strategies such as question coaching or tips for communicating with providers. They were also more likely to need help making care more affordable.

0% 25% 50% 75%

Found child/elder care

Helped with housing

Attended appointments

Brought friends/family close by

Helped make care less expensive

Helped with paperwork/applications

Referred to support group/counseling

Gave communication help

Scheduled appointments

Helped with transportation

Helped get referrals

5%

15%

15%

28%

28%

32%

55%

55%

58%

58%

74%

Figure 28: Most Common Perceived Activities

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Effectiveness of Navigation Services

For each Navigation service a respondent had used, they were asked to compare their experience with the Navigator to their cancer journey before they began Navigation (if relevant) or other times they had been treated for a serious illness. Respondents rated the relative difficulty in obtaining care with and without the Navigator’s services on a five point scale. The figure below shows the percent who rated obtaining care “much easier” (the highest rating on the scale) after working with the Navigator.

The chart shows that, while these were not the most commonly used services, the ones which had the most impact were help with paperwork and applications, obtaining housing when away from home for care, scheduling appointments and finding transportation.

The top five items on this chart are all related to logistic barriers, which corresponds to the qualitative themes found during interviews. Patients valued the Navigator’s ability to keep their paperwork and appointments organized. As one participant said, “he was always right on it, right on it. I never had to call him or remind him or ask him twice, he was always on everything.”

The lowest rated items are mostly related to easing the emotional burden patients felt as a result of their diagnosis. This is in contrast to the qualitative analysis, which revealed that most respondents placed a great deal of emphasis on the Navigator’s role as a “shoulder to cry on” and someone to talk to. Thus, the results shown here are probably not indicative that the program is falling short on this goal, but more likely show that patients had other emotional support before the Navigator, so the Navigator was a compliment to family, friends and community rather than the sole source of emotional support. Additionally, there was a small group of patients who reported an unwillingness to share the emotional side of their cancer journey with the Navigators, preferring to turn to family for this.

0% 25% 50% 75% 100%

Support groups/counseling

Finding information on your own

involved in decision making

Listening/support

Family/friends close by

information for decision making

Communication help

Attending appointments

Finding more affordable care

Getting referrals

Transportation

Scheduling appointments

Housing

Paperwork/applications

41%

43%

46%

50%

55%

55%

59%

67%

73%

74%

83%

83%

83%

92%

Figure 29: Most Effective Navigation Services

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These results suggest that patient education, information seeking and decision making could be improved upon in future Navigator programs. Although NTCNP Navigators were trained in these areas, these results indicate that less than half of respondents found the Navigator’s help with these areas made their journey “much easier”. As will be seen in the next section, patient education in particular is seen as an extremely important aspect of the program by participants, further highlighting the need to focus on this Navigator skill. Using 50 percent as a benchmark, future programs should seek to increase the number of participants who report a “much easier” result.

Importance and Satisfaction

Respondents were asked to rate a series of Navigator characteristics on both how important the trait was to them, and how satisfied they were with their own Navigator in this respect. Both were rated on a five point scale with 1 being least important or least satisfied and 5 being most important or most satisfied.

Not surprisingly, respondents generally felt all of these characteristics were important in a Navigator. Figure 30 shows the percent who rated each characteristic “extremely important”.

0% 25% 50% 75%

Navigator gives enough time

Navigator includes my family/friends

Navigator responds in timely manner

Navigator respects values/choices

Navigator can answer my questions

30%

33%

33%

43%

48%

Figure 30: Most Important Navigator Characteristics

0% 25% 50% 75%

Navigator gives enough time

Navigator includes my family/friends

Navigator responded in timely manner

Navigator can answer my questions

Navigator respects values/choices

36%

38%

53%

54%

56%

Figure 31: Satisfaction with Navigator Characteristics Respect for patient’s values and choices, ability to answer questions, and timely response were pretty much equally ranked with over half of patients giving their Navigator the highest possibly rating on these items.

Ability to answer patient’s questions and respect for patient’s values and choices were the two most important characteristics.

Respondents were also generally very satisfied with the Navigators. Figure 31 shows the percent who answered “strongly agree” to each question.

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Figure 32 shows the both the importance and satisfaction ratings compared. Importance ratings are plotted along the bottom axis while satisfaction ratings are plotted along the left axis. The bottom right section, in red, would show any problem areas - items which were seen as highly important, but with which participants were most unhappy. None of the characteristics fell into this section. The bottom left section, in blue, shows areas where satisfaction was lower, but less importance was placed on these characteristics, so while it would be good to increase satisfaction across the board, including family and friends and increasing the length of encounters are probably lower priority items to consider. The top left section shows participants were generally quite satisfied with the time it took for their Navigators to respond to them, although it was not something they considered most important. Ability to answer participant questions and respecting values and choices are the program’s greatest successes, seen in the top right section, in green. These are the areas of highest importance to the participant and with which they are most satisfied.

Figure 32: Quadrant Analysis of Importance and Satisfaction

Timely Response

Gives Enough Time

Includes Family/Friends

Respects Values and Choices

Can Answer Questions

25% 30% 35% 40% 45% 50% 55% 60%25%

30%

35%

40%

45%

50%

55%

60%

0

2

Importance

Satis

fact

ion

High Satisfaction, Low Importance

Low Satisfaction, Low Importance Low Satisfaction, High Importance

High Satisfaction, High Importance

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0% 25% 50% 75%

Poor

Fair

Good

Excellent

8%

8%

30%

55%

Figure 33: Overall Satisfaction with NTCNP

0% 25% 50% 75% 100%

Definitely would NOTrecommend

Probably would NOT

Maybe, maybe not

Probably would

Definitely would recommend

3%

3%

8%

10%

78%

Figure 34: Likelihood to Recommend

More than 80 percent rated the program as either “good” or “excellent”.

Overall Satisfaction and Drivers Analysis

Close to 80 percent reported that they would definitely recommend the Navigator program to a friend or family member who became ill.

This is another measure of satisfaction that is usually closely associated with actual usage going forward.

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Navigator can answer my

questions or find someone who can

Navigator gives me

enough time

Overall Satisfaction

Figure 35: Top Drivers of Participant Satisfaction

Drivers analysis uses regression modelling to look at which of the specific satisfaction items are most strongly related to overall satisfaction. This allows us to narrow down which areas to focus improvements in order to better serve patients.

As shown in Figure 35, the strongest drivers of overall satisfaction were the Navigator’s ability to answer participant questions and giving the participant enough time. It is interesting to note that, while respondents did not rate the “gives enough time” item as particularly important when asked about it directly, this item was a strong driver of overall satisfaction. This may indicate that respondents placed more importance on it in relation to their particular Navigator than they did in the abstract concept of assigning value to a general Navigator program. This corresponds with the qualitative finding that patient education and information is one of the most important features of the program.

Likelihood to recommend Navigation was also primarily driven by the Navigator’s ability to answer questions, and in this case the second aspect that became important was timely response. Interestingly the timeliness of the response seems to be more important when thinking of others than the patient him or herself.

The figure below show the relationship between these drivers and overall satisfaction.

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Patient Survey Discussion

The three communities which participated in the Navigator qualitative interviews (Communities 5, 6, and 8) differed in geographical location, histories of federal recognition, and access to healthcare and support services, thus accounting for some basic differences in the barriers the participants faced throughout their cancer journeys and the support that they received from the Navigator program.

Challenges & Barriers: Participants from all three tribes faced challenges in the form of physical, emotional, financial, and transportation barriers. However, for Communities 5 and 8, finding and receiving appropriate care such as scheduling appointments and dealing with difficult health care providers was a greater cause of stress and anxiety than for Community 6. For Community 5, participants also faced many more financial barriers, such as a lack of insurance, poor coordination between agencies offering financial assistance, and a fear of ruined credit.

Navigator Support Services: All three communities agreed that the Navigator program provided support services such as help with decision-making, information, communicating with providers, access to financial resources, and other support such as scheduling appointments and providing referrals. A majority also agreed that the most important service the Navigator program provided was the emotional support. Community 5 differed from Communities 6 and 8 in that participants here engaged in more discussion of cultural beliefs and traditions as a significant aspect of their healing journey. Due to the burden of greater financial barriers, Community 5 also emphasized the value of receiving referrals to financial support services from the Navigator program.

Program Suggestions: Participants made several suggestions to improve the Navigator program, including the expansion of financial support, a concerted effort to target to high risk groups (such as youth with cancer), more referrals to emotional support services (such as counseling and support groups), more home visits, more collaboration with health care providers, greater emphasis on cultural resources, and expanded staffing and program promotion. One participant also suggested that the Patient Navigator retain a certain level of medical knowledge (Navigators in all three communities differed in terms of their medical background; while some were RNs, others were lay-people). Another suggested that the Navigator provide more verbal as opposed to written information. This suggestion speaks to the importance of oral communication in native cultures and the effective use of storytelling to promote health and wellness73.

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According to participants from all three communities, the ideal Patient Navigator should have the following traits and qualifications:

• Cultural Awareness: Having a high level of cultural awareness, understanding spiritual practices, and being supportive of cultural beliefs and traditions.

• Information and Resources: Providing information and resources on cancer issues, answering questions or finding someone else who can answer, retaining a certain level of medical knowledge, giving scenarios/examples of other patient experiences, and keeping abreast of new treatments and alternatives.

• Communication and Decision Making: Communicating/coordinating with providers, helping with questions to ask providers, explaining things in common terms, being available to attend appointments if needed, supporting decisions, and back up on seeking a second opinion.

• Emotional Support: Being open, able to listen, available, responsive, someone to share feelings with, someone to count on, someone who cares, a shoulder to lean on, empathetic, personally involved, someone with attention to detail, and responding in a timely manner.

• Financial Support: Providing referrals for financial assistance, helping with paperwork for applications and bills, making phone calls to insurance companies, and connecting patients with simple financial support from their tribes such as gas vouchers/transportation, housing support, and help with housework, etc.

• Other Support: Help with scheduling appointments, keeping track with daily logs, delivering medications and prescriptions, making home visits, and providing referrals to other support services such as support groups, rehabilitation services, hair/makeup, etc.

Part 4

Discussion

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Lessons Learned and Recommendations

“No one wants to learn by mistakes, but we cannot learn enough from successes to go beyond the state of the art”

- Henry Petroski, Civil Engineer and Failure Analysis Specialist

Balance Research and Community Needs

The NTCNP began with a research design that, at its heart, was designed to collect data. There are inevitably gaps between what such a model addresses and what is valued and needed by the tribal community. We found the best way to identify these differences was to seek insight from community members, tribal leaders, and those on the front lines. In future studies we recommend building this process into the research design before data collection begins. Focus groups and key informant interviews would be suitable methods and allow for more reliable findings than the anecdotal methods used in this study.

Through this process we found that modifying the research model can be done successfully. By carefully considering the impact of each change, it was possible to retain the research design while still allowing for a model that was relevant and a good fit for indigenous communities. Navigators and clinic staff still struggled with some of the restrictions placed on services due to the research model, but overall the program was successful at the community level, receiving accolades from patients, clinic staff, community partners and tribal leadership.

Importance of “Branding”

The name of the program was inherited from the Pilot Study. To achieve some continuity with patients who had been seen by Navigators in that project, the name was changed only slightly to “Northwest Tribal Cancer Navigator Program”. The name had not posed a problem during the Pilot Study, but during the current study

it quickly became evident that the name was in fact a barrier to enrollment. The name branded the service incorrectly, positioning it as a service for cancer patients. This caused confusion about who was eligible and what the program could offer for patients who had not received a cancer diagnosis. Providers in the clinics found it difficult to understand what the Navigator’s role would be in those cases. There was also some concern about referring patients to the “cancer person”, as the Navigators became known, if a patient was unlikely to go on to a cancer diagnosis. Some providers felt this would cause unnecessary alarm. Finally, providers expressed reluctance to burden the Navigator’s case load with an “easy” case that would be unlikely to go on to cancer diagnosis.

Despite efforts to re-brand the program with a name change, brochures, presentations to clinic staff and community, this common misconception proved difficult to overcome.

In future endeavours, we would recommend that neither the program name nor the Navigator’s title include the word cancer. Alternatives may include terms such as “Patient Navigator”, “Community Navigator”, “Nurse Navigator” or “Health Navigator”. Care should be taken from the launch of the program to explain that Navigators work with patients who have not been diagnosed with cancer, and are there to help with preventive care as well as diagnoses.

Challenges of Decentralization

Management of NTCNP Navigators was divided between the research staff, housed centrally at NPAIHB, and the clinical managers at each facility. This presented some challenges which weakened

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the program. Communication between the clinic management and research management was difficult. Navigators answered to two different management teams with different expectations of them. When issues arose on the clinical side it was difficult for research staff to understand the nature of the problem or participate in a solution, as a trip out to the clinic was expensive and time-consuming.

In future studies we would recommend against managing Navigators from a central location, unless remote access to RPMS and EHR is set up in advance. Now that most clinics have moved onto EHR, this is possible. If administrative staff were responsible for generating lists of eligible patients and passing them along to Navigators this would make much better use of the Navigator’s time and allow for administrative staff to be better in touch with the issues of recruitment and ensure all eligible patients were included in the study. This approach is applicable to both research and service oriented Navigator programs.

If a central management structure is undertaken, it may also be helpful for Navigators to be employees of the central agency, placed at clinics as contractors. Another option would be to house Navigators at a central location from which they reach out to surrounding communities. This may be a better fit for areas such as Puget Sound where several smaller Tribes are located near one another, or in an urban setting.

Shared Burden Lessens Burn-Out

Confirming the findings of the Pilot Study, NTCNP found that RN trained Navigators and community or “lay” Navigators bring very different, complementary skills to the job. RN level Navigators are usually better able to communicate with providers and more comfortable answering participants’ medical questions and providing patient education. However, nurses tended to struggle with the unstructured nature of the job. Community Navigators were excellent at recruitment and outreach events. On the other

hand, they sometimes felt out of their depth in communicating with providers, reading charts and answering medical questions.

As Navigation moves towards becoming a standard health care service, another issue to consider in the decision to hire a nurse or other medical professional versus a lay person is which type can provide services that are reimbursable.

If the budget allowed, the ideal structure would be a team of two Navigators - one a full time RN or Medical Social Worker and the other a part-time lay Navigator, preferably a member of the local community. The nurse Navigator would primarily be responsible for participant encounters while the community Navigator handled recruitment and outreach events.

Another benefit of the two-person team is to combat Navigator burn-out. This in itself may offset some of the extra cost. Navigators struggled to handle a full case load, recruitment, outreach events and networking all at once. Making the job even more difficult, they were geographically separated from other Navigators and so had limited opportunities to draw on each other’s strengths. Having a similarly tasked colleague would allow for debriefing and stress reduction. When budgets allowed for it, second part-time Navigators were added, which alleviated many of these stressors.

Another approach taken to combat these issues was providing many opportunities for

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the Navigators to connect with each other. As mentioned previously conference calls were held every other week. Training topics and administrative updates were given during these calls, but the primary purpose was to encourage the Navigators to share their challenges and successes with the group, allowing them to gain knowledge and draw strength from each other.

A few times a year they were also brought together to attend trainings, join in regional cancer coalitions, and organize collaborative outreach events. These trips out of the clinic gave the Navigators a chance to meet in person, and break out of their routine. They expressed concern at leaving their participants for more than a day or two, but always reported feeling refreshed, inspired and with renewed commitment following these events. Opportunities for Navigators to meet face-to-face should be built into budget and time line, at least once each quarter. Meeting with Navigators from other programs nationally, and even internationally is also valuable. Support to allow Navigators to take this time away from their participants and clinic duties is essential to the success of these meetings.

Need to Enroll Patients Early

The Impact of Delays in Diagnosis

Delays in diagnosis and treatment have been linked to later stage at diagnosis, high patient anxiety and poor survival outcomes.(5,6,7,8,9,10) There are many reasons AI/AN populations are at particular risk for delays, despite the best intentions. However, the NTCNP faced challenges in enrolling participants early enough to have an impact on time to diagnosis. This was the biggest problem for the study throughout, and although it was improved it was never fully overcome.

Waiting for a cancer diagnosis and, if needed, treatment is a time of high anxiety and long waits can lead to poor outcomes. This topic has become the focus of a great deal of attention recently, especially in countries such as Canada and Britain which operate under national health

care systems. Those systems came under heavy criticism towards the end of the last decade with patients waiting for unacceptably long periods to get a cancer diagnosis or to begin treatment. As a result, a wave of research was undertaken to identify the true impacts of delays and help to inform policy makers regarding acceptable time frames.

Three of the primary issues that have been linked with delays in cancer diagnosis and treatment are increased patient anxiety, later stage at diagnosis and poor survival outcomes. Many studies have shown that delays as short as one week to find out the results of a biopsy, for example, may lead to significant increases in case level anxiety.(6) Patients report that the time between referral from their local clinic to first seeing the oncologist is the most difficult time, and women are more likely to experience this distress than men.(7)

There have also been several large-scale studies on breast, colorectal and lung cancer showing a significant association between diagnostic delays and stage at diagnosis, tumor size and survival rates.(8,9,10) One recent report, a meta-analysis of breast cancer patients, found that 14 out of 21 studies supported the hypothesis that tumor size and stage are significantly related to duration of symptoms prior to treatment.(9) Survival rates are also linked to delays, with one large-scale study reporting a ten percent lower survival rate in patients who waited more than 12 weeks between onset of symptoms and beginning treatment when compared to those who had less than 12 weeks delay.(8)

Although there are no regional studies on delays and outcomes, local data do show that AI/AN cancer patients tend to be diagnosed at later stages and have the worst survival rates of any race. AI/AN cancer patients have significantly lower 5-year survival rates. The relative risk of death for within five years of diagnosis is 1.8 for women and 1.7 for men when compared to non-Hispanic whites.(11)

Risk of Delays Following Abnormal Finding

Patients are particularly at risk for delays in the

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period between the first abnormal finding and diagnosis. Following this first concerning sign, a flurry of follow-up tests are often ordered to rule out cancer or make a definitive diagnosis. It is essential to identify the type and stage of disease so the best treatment decisions can be made. Diagnostic procedures may include a wide variety of tests requiring multiple appointments with specialists.

This is a crucial period for patients. During the time before a diagnosis has been reached, patients are anxious and under a great deal of stress waiting to hear whether or not they have cancer, what type, how aggressive and what the next months will hold if they do need treatment. To add to this stress, there are very few financial resources to assist patients in receiving required diagnostic tests during this time. Patients screened through the state breast and cervical programs are not automatically enrolled into Medicaid until a diagnosis has been reached which limits the number of providers patients can see for diagnostic procedures. Many foundations and other organizations that provide financial aid to patients with specific types of cancer require proof of diagnosis before they will accept applications. This is a time when patients are very vulnerable to all of the financial, emotional, and health system related barriers that prevent timely follow-up and adherence to provider’s recommendations.

For this reason, many patients who come to their provider with a concerning symptom or have their screening tests as recommended may still end up with a late stage diagnosis and a difficult fight with an advanced cancer. Dr. Harold Freeman, who created the first Navigation program in the 1990s, has said “We must ensure that any women with a positive finding will receive further diagnosis and treatment on a timely basis. There is a particularly critical window of opportunity to save lives from cancer between a point of suspicious finding and the resolution of the finding”. (12)

Barriers in AI/AN communities

Patients in our communities are likely to

experience delays. Many are uninsured or under-insured. Poverty leads to other practical barriers such as difficulty with transportation to appointments, inability to take time away from jobs, and difficulty securing child or elder care. For many of our patients, the nearest cancer center is more than an hour’s drive from home and there is no public transportation. Some face health literacy or cultural barriers. Fear and a sense of fatalism that persists regarding cancer often leaves patients unwilling to pursue a diagnosis. While it is beyond the scope and economic means of most community-based programs to solve the vast social, economic and health system problems that create these barriers, Navigation focuses on tackling the things that we do have the power to change.

The Role of the Navigator in Preventing Delays

Navigators are expert problem solvers and are extremely creative in coming up with “out of the box” thinking to overcome barriers. The majority of patients who have abnormal screening tests go on to receive a non-cancer diagnosis. This means that many patients who were enrolled early, immediately following an abnormal test result, did not go on to be diagnosed with cancer. For example, many abnormal mammogram findings or lumps identified during breast exams turn out to be cysts or calcifications. Prostate Specific Antigen tests are rife with controversy precisely because they can often be indicative of benign conditions rather than cancer. However, Navigators can still be an essential source of information, emotional support, and practical help for these patients. And, since we can’t know which patients will go on to be diagnosed with cancer, Navigators make sure to aid a wide range of patients through the process as smoothly, quickly and with as little anxiety as possible, thus ensuring those who do become cancer patients receive this important assistance and are already familiar with the Navigator by the time treatment decisions must be made.

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Case Example: Navigation through Diagnostic Work Up

The following story is an example of a best-case scenario. A patient has completed a fecal occult blood test which came back positive for blood in the stool, but the provider is fairly sure that this bleeding is from hemorrhoids and not likely to indicate cancer. The next step is a colonoscopy which will make sure that there is nothing more serious to worry about. The patient is uninsured and it will be difficult to find funding to pay for this expensive procedure. The Navigator works with the patient to fill out applications for Medicaid or Medicare, and contacts a specialist who has a relationship with the Navigator and is willing to do the procedure at a reduced cost.

The patient is reluctant to go through with the procedure due to fear, confusion about the process and concern that the diagnosis will be cancer. The Navigator offers emotional support, someone with whom to discuss fears and concerns, and helps the patient understand that being referred for this test does not mean he or she will go on to have cancer. The Navigator uses patient education tools such as models of the colon, print materials and online sources to describe the procedure, why it is done, what to expect on the day of the appointment and during the following days. The Navigator offers patient education materials that have been designed specifically for AI/AN patients and embrace the storytelling, family-oriented values that resonate with many native patients.

The patient faces a number of practical barriers to attending the appointment. The family budget cannot find room for the cost of gas for the long trip, and there is no one to take the patient home from the appointment. The Navigator inquires about gas vouchers, and finds a Community Health Representative or a survivor from a local support group to drive the patient to the appointment.

As anyone who has had a colonoscopy knows, the preparation is often worse than the actual procedure. All too often the test will be of limited use because the colon has not been cleared. The

Navigator provides the patient with information and reminders regarding the importance of fasting and completing the laxative solution, and offers tips on getting through the prep as painlessly as possible.

The day before the procedure, the Navigator checks in on the patient to reinforce the need for proper prep and help the patient with any problems. The day of the appointment, the Navigator accompanies the patient to the clinic. And finally, in the days following the test, the Navigator checks in with the patient to make sure there is no persistent nausea, bleeding or discomfort, and helps alleviate fears while awaiting the results.

In the end, the colonoscopy has confirmed that there was no cancer. However, this patient was supported and comfortable throughout the process, attended the appointment and received the good news quickly, thereby reducing anxiety. Following this positive experience, this patient may be more likely to attend regular screenings and encourage friends and family to take care of their health.

All of these tasks are similar to what Navigators do for patients post-diagnosis. However, they can be of great benefit to patients even if they do not go on to be diagnosed with cancer. Navigation during this period ensures patients adhere to recommendations in a timely manner and do not spend weeks or months worried about the possibility of cancer and unsure how to proceed.

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Challenges to Enrolling Early

During the first year of the program, the majority of patients were enrolled after a diagnosis had been reached. In fact, at that time only 14 percent of the patients in the program were enrolled before diagnosis. In subsequent years, through a concerted focus on this issue, the number of patients enrolled before diagnosis outnumbered those enrolled after. However, many patients were still missed.

One of the primary hurdles faced in enrolling patients early in the cancer journey was simply identifying those who had an abnormal test result or symptom. Although some test results are recorded in RPMS, there is no dedicated module designed to look at cancer. This means that Navigators had to develop a few different ways of searching for abnormal test results, and none of these were ideal. In some cases, inconsistent and delayed data entry added to the challenge. A number of different search templates were tested and the Navigators were trained in the use of RPMS to perform these searches. They became adept at scanning these reports for patients who may need assistance with follow-up and the process improved towards the end of the study. However, finding time to carry out these searches remained a challenge for Navigators who already had full case loads.

Another hurdle to early enrollment was obtaining test results. Most imaging tests, colonoscopies and biopsies took place outside of the clinic. Navigators found it was often difficult to track down the results of these tests in a timely manner. They took on the task of calling outside providers to request test results be returned to the clinic and getting them back into the patient’s chart. This proved time consuming work and required the Navigator to track a large number of patients who were not part of their formal case load.

Another issue that emerged, mentioned previously, was that the materials themselves created a barrier to early enrollment by positioning the program as a service for ‘cancer patients’, rather than those

who had an abnormal finding.

Gaining support and building relationships with providers in the clinic is essential. Naturally, each Navigator had a slightly different approach to Navigation depending on their community, clinic policies, and their own personalities. However, providers must have confidence in the Navigator, who often spends more time with their patients than any other member of the health care team. Keeping the lines of communication open and having regular meetings with the medical staff helped to establish these relationships. Serious consideration should be given to building provider support within the clinic from the start, before the program is launched. Assigning a champion may be helpful, particularly if this is a provider who has been a long-standing member of clinic staff. High turnover among staff at tribal clinics hindered the Navigators’ ability to rely on these relationships and made building confidence within the clinic administration and medical staff more difficult.

The research has clearly shown just how serious delays in diagnosis and treatment can be. Navigators have the tools to help overcome barriers that cause long waiting times for cancer diagnosis and treatment, and can help patients through the process with less anxiety.

Recommendations for Earlier Enrollment

One change that would have made it much easier to identify and enroll patients early, as well as making the program more in line with the needs of tribal communities, would be to expand the Navigation time line to include patients who are in need of screening. During this study Navigators naturally fell into the role of encouraging screening and bringing awareness as well as opportunities to screen to the community. However, Navigators should have been formally enrolling patients during this time period. Many patients needed assistance overcoming the same kind of barriers - financial, logistic and emotional - to get to their screenings in the first place. Data on cancer screening prevalence from the IHS shows

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that fewer than 40 percent of AI/AN patients in the Northwest are receiving the recommended colorectal screenings or mammograms, and fewer than 60 percent are receiving the recommended pap tests. Compared to statewide rates for all races combined, these rates are substantially lower than the general population in Idaho, Oregon and Washington 67. Other similar program have been implemented with different AI/AN populations, such as the “Native Sisters” Navigators of the Native American Women’s Wellness through Awareness (NAWWA) program, which was shown to increase screening rates among AI women 70. Thus, Navigation during this phase is an obvious fit. Additionally, tracking patients who are getting their routine screenings would poise the Navigators perfectly to be the first to know about any abnormal results, thereby giving them the best possible chance at getting patients to their diagnosis as quickly as possible.

Navigator Case load

In the first few months on the job, most of the Navigator’s time was spent raising awareness of the program, networking and establishing relationships within the clinic. During this stage they also devoted quite a bit of time to outreach events. As their case loads grew, more time was dedicated to participant encounters. Navigators reported feeling overburdened when their case loads reached about 25 participants. Of course, this number could be higher if most of the participants had minor abnormal findings, and only needed occasional assistance to get to their follow-up appointments. If the balance leans towards more diagnosed cancer patients, 25 may be too many. When the case load became heavy, Navigators reported not being able to do regular check-ins with participants; rather they let participants contact them and took a “no news is good news” approach. Navigators disliked being in this position, feeling that they became out of touch with their participants’ care.

When Navigators had a two-person team they were less likely to report burn-out from their case

load, as their assistants took on recruitment and outreach events. Navigators found it difficult to say no to requests from the clinic or community to do extra tasks such as outreach events, so when extra help was not available from a second Navigator, they were advised against spearheading these events. Forming a committee with others and spreading the responsibility out among the group was much easier on the Navigators, but they had to be vigilant about these boundaries. Because they were all so passionate about cancer prevention and the health of their communities, they often took on much more than they could realistically handle alone.

Community Outreach

Although it was not formally part of the scope of the Navigators’ job to be involved in community outreach events, it naturally fell to them and became clear that it was an important part of their role within the community. For Navigators who came to the community as outsiders, it was a way to establish trust and build a relationship with the people they were serving. It was also an important part of recruitment, especially in the beginning, providing a platform to introduce the program and spread the word. Navigators used these events to raise funds which were then given back to the Tribe or other foundations which had provided resources and support to their participants. Community outreach events were also great for raising Navigator’s spirits; being part of a fun, positive, prevention-focused event was a welcome relief from their daily work with terminal patients. They reported a morale boost from being there as part of the solution, rather than only becoming involved when a problem arose. This was also a valuable part of the image of the program, taking some of the stigma out of the Navigator as someone who was only involved with patients under dire circumstances.

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Charting Lessons Learned

A large part of this study focused on medical chart reviews of eligible patients. As a result, much was learned regarding the successes and challenges of using RPMS, EHR and paper charts to identify patients who have abnormal findings or cancer diagnoses in tribal clinics. This section summarizes some of recommendations based on the experience.

Assigning a Cancer Champion

The best follow-up was found at clinics which had one person, not always the Navigator, who was responsible for keeping track of patients who had cancer screenings.

There is no easy way to do this in RPMS due to the fact that some tests do not have a systematic place to record the outcome (i.e., clinical breast exams) and others are done outside the clinic (i.e., mammograms and colonoscopies) which requires effort to ensure reports are returned to the clinic and documented in the system. However, having one person (or a team) who is charged with following up these tests appears to be highly effective.

Recording Lab Test Results

One of the barriers to easy identification is the fact that many lab test results were not recorded in the lab package. As a result, a search yielded the date a lab test was done, but no way to determine the outcome. To find out if the test result was normal or abnormal the paper chart had to be requested and the hard copy of the report reviewed, which was time consuming.

Most clinics have a two-way interface with the laboratories processing their in-house lab tests now, allowing for results to be automatically entered into the lab package. This is obviously ideal from a data entry standpoint. For PSA and FOBT tests especially this system seemed to work most of the time, with consistent and searchable

results recorded.

For pap tests, results were not automatically input in a searchable format. Results generally came back as free text which had to be reviewed and the result recorded by hand for each test. It is unlikely that providers did not review the results of the tests they had ordered; however, without a systematic way to search for abnormal results it is difficult to bring a team such as community or public health nursing or case management onboard to help with patient compliance with follow-up. Pap test results are especially difficult to search manually as pap tests are one of the most common screenings and only about ten percent of them are abnormal. In clinics where paper reports were scanned this was slightly easier as the result could be found through VistA Imaging, a portal within EHR, but the best practice for quickly identifying abnormal lab results was found in clinics which systematically recorded the results of each test within the labs package.

Results from Other Screenings and Tracking

Despite the challenges with lab test results, lab test results were actually the easiest to search as there was as clear place to record them within RPMS. More difficult were clinical tests (i.e., clinical breast exams or digital rectal exams), mammograms and colonoscopies. Clinics differed on where to record these results, and variation within each clinic posed a problem. Some solutions we encountered are listed in the sections which follow.

Active Problem List

The Active Problem List within RPMS is one option to record diagnosis codes associated with an abnormal finding or cancer diagnosis. This could be an effective way to generate a list of patients in need of follow-up. In practice, we found that old diagnoses were often included on the active problem list. These diagnoses may

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be better placed on the inactive problem list, or coded using a V code as a history of cancer. It is possible that they were purposely kept on the active problem list under the view that cancer is a chronic problem and survivors have special needs even after the disease is considered in remission. Keeping old diagnoses on the active problem list would ensure providers are aware of potential problems due to the patient’s history. One solution would be to incorporate the date of onset field. Using the Active Problem List together with the date of onset would keep old diagnoses easily noticed, but still allow for a search that would limit results to recent diagnoses. Training would be needed to implement this usage of the problem list, though, as the date of onset is often used incorrectly. For example, in one case the date of onset field was used to record the date the patient first told the provider about a cancer diagnosis but the actual diagnosis was more than 10 years prior.

Women’s Health Package

The Women’s Health Package (WHP) has the ability to keep track of testing history, results, routine screening, follow-up needed and date due. It has the power to generate a list of patients who are overdue for a test, or have testing needs coming up. It also tracks the reminders that have been given. It is a very powerful tool; however, in our experience it was not used in this way by any clinic. One clinic used it effectively to keep track of testing history, but none used it to follow abnormal findings. There appear to be barriers to using WHP which make in unacceptably difficult

to implement. The two primary issues were the need for double data entry and that WHP does not integrate with EHR for reminders. It also unnecessarily separates out women’s health screenings from general screenings, so recording test results only here is somewhat cumbersome as a separate search protocol has to be in place for just these three types of test. Following on from the concept of WHP, a new capability within iCare has been created which addresses these issues, and will be discussed in the next section.

iCare and CMET

iCare is a tool that allows providers to follow a panel of patients. Using the new CMET (Care Management Event Tracking) functionality within iCare is the best way to generate a list of patients with abnormal findings. This application was developed to overcome the problems with Women’s Health Package mentioned earlier. CMET continues with the goal of tracking abnormal findings and avoiding the “fall through the cracks” syndrome, but with many improvements.

CMET uses a comprehensive pre-defined list of breast, cervical, colorectal or skeletal health events, both screening and diagnostic. The program automatically searches RPMS overnight as a background process, and lists any new events that have been recorded since the last search. Once events have been identified, users can set “ticklers” to remind themselves to hunt down and record test results, inform the patient, order follow-up tests and generate lists of due or overdue follow-up events. This is also a one-stop shop to look at a patient’s history of testing and their results, and pulls in anything that was entered in WHP previously. CMET can pull up results that are input electronically in WHP, labs, or elsewhere in RPMS, but only to allow quick review. The user must still do the double data entry of indicating the type of finding. The program does, however, automatically assign findings to normal or abnormal categories. Even more powerful is the batch processing option which allows large

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batches of paps or mammograms to be assigned normal results and the events closed all with one operation. A final benefit of both CMET and iCare is that reminders can be set which integrate with EHR reminders. CMET was released after the end of the NTCNP, so we were not able to trial it in this setting, but it may be the closest we’ve seen to the solution we looked for and tried to create throughout the study.

At this time CMET does not track diagnosed cancer patients or any abnormal cancer findings outside of colorectal, breast and cervical (there is some suggestion that it may be expanded in the future). To track these patients, iCare panels may be the best option, creating hand-picked lists of confirmed cancer cases or using an underlying RPMS query to identify cancer codes on the problem list, purpose of visit or diagnosis list. These searches are still vulnerable to the weaknesses discussed earlier - they may generate spurious results with out of date diagnoses lingering on the active problem list. Also, this type of panel is static, so the list does not automatically update with new cases as new diagnoses are entered. To update the list one would need to re-run the underlying search on a regular basis.

iCare and CMET are both limited by the quality of the charting on which they are based. Charting must be up-to-date and consistent, and results must make their way back to the charts in a timely manner. However, CMET is the first application since Women’s Health Package to provide a way to list patients who are outstanding for test results. This may be a good way to start to “close the loop” with labs and outside testing.

Importance of “Closing the Loop” on Outside Procedures

All clinics in this study had some degree of difficulty obtaining and placing outside reports from specialists, hospital stays and pathologists back into the charts. Pathology reports were the most commonly missing. For some clinics just getting started on VistA imaging, scanning lagged behind leaving reports in “to scan” piles and thus

not available for review. However, quite often the reports were never returned to the clinic from outside providers.

If the patient’s primary care provider was not at the tribal clinic this was especially difficult. The clinics with best success here were those which required a “Release of Information” form to be signed by the patient on their first visit to the clinic. Having this on file rather than having to track the patient down streamlined the process. However, even when the clinic was the PCP, and referrals were generated from within the clinic, obtaining records from outside sources proved difficult. When Navigators were responsible for this task they reported it was hugely time consuming and often took several phone calls to track down reports, particularly for benign results. It was not uncommon to find in the chart a referral for biopsy, for example, with a date of the surgical procedure found in the chart, but no indication of whether the results were malignant or benign. Presumably the provider was aware of a benign result, from making contact with the surgeon, but there was no “closing the loop” on this in the chart itself.

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Making Best Use of EHR

The majority of the clinics in the NTCNP made the transition from paper charts to EHR during the study. In general, charting was much more consistent and easier to search with the introduction of EHR. However there were some trouble spots.

During the transition period, charting suffered to various degrees at each clinic. In one case, charts were left with a gap of several months in which progress notes were neither found in the electronic or paper chart. While scanning was brought online there were often backlogs of reports in piles waiting to be scanned which were sometimes inaccessible - not yet scanned and no copy placed in the paper chart.

Heavy reliance on templates in provider notes also made it difficult to unravel the “story” of a patient’s cancer journey. In paper charts, handwritten or dictated provider notes were more detailed and included social and family factors relevant to the case, more consideration of co-morbidities, and a more detailed patient and family history. Perhaps most importantly, providers seemed more inclined to elaborate on their assessment, prioritizing concerns and summarizing the bigger health picture. For example, although the patient may have come in for something like a flu shot, detailed notes may include a comment about an abnormal pap test from a few months earlier. A new provider reading a few of these notes could step into the patient’s care with as much information as the previous provider. These details were not often found in EHR notes which tended to have only a few sentences added to the standard template text. Rarely did EHR notes discuss anything outside of the specifics of that visit. Of course providers did not change their approach to patient care, but it seems that the time-saving advantage of note templates also led to a temptation to skip detailed chart notes resulting in somewhat myopic notes that did not support good continuity of care. It is also noted that charting in EHR is more time consuming,

and providers are likely trying to make up for some of the lost efficiency by limiting time spent writing progress notes.

The introduction of EHR offers a great opportunity to improve continuity of care and make charting easier. However, if not used effectively it can also be a hindrance. Maintaining the quality of dictated or handwritten progress notes coupled with consistent up-to-date coding, data entry and scanning will maximize the usefulness of EHR.

Making Best Use of Paper Charts

While few clinics are still using paper charts exclusively, there are some which have not made the transition or do not yet have VistA Imaging set up for scanning in reports. Paper charts are also vulnerable to several problems that make tracking a patient’s care difficult. The most common issue was inconsistency in placement of reports. For example, if a patient had two pathology reports, one may be found under the laboratory tab and the other under the miscellaneous tab. Of course differences between clinics are expected, but inconsistencies were found within clinics, even within one patient’s chart. Some clinics had tabs in the chart dedicated to women’s health where paps and mammograms were filed. This was a good procedure when it worked but also had a tendency to break down over time, most likely due to staff turnover or changes in training. Thus, over time, staff seemed to be unsure if these reports should go in the women’s health section, labs, x-ray or elsewhere, and inconsistency crept in.

Other common issues included reports out of chronological order (especially when several documents were faxed over at once, for example from a hospital visit), and duplicates (sometimes several) of the same report found in the chart. Less common issues included reports placed in the wrong patient’s chart and charts labeled incorrectly (i.e., wrong birth date).

Several paper charting practices were identified that improved the ability to find and track these patients. One simple but effective tool was a flow

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sheet for pap tests and mammograms. This could be expanded to include all relevant cancer screenings and is a great at-a-glance summary akin to the report generated by WHP. Also very useful was to have an up-to-date copy of the “Adult Health Summary” from RPMS in the front of the chart. One clinic incorporated post-it notes as a paper reminder system analogous to EHR reminders, which pop up in a very obvious way, every time a patient’s chart is pulled up. Patients who were overdue for a follow-up test had a bright post-it note stuck to the first page of the chart with bold lettering informing the provider that the patient was overdue for follow-up care, and a summary of the contact attempts so far. Post-it notes may be unconventional, easily lost and perhaps criticized for introducing noise into the charts - but this method was certainly very effective.

Survivorship Care Plans and Summaries

For clinics which had Navigators, research staff created a care plan summary page which Navigators completed as the participant’s case progressed. This was a short, two-page document based on the American Society of Clinical Oncology templates and included the date, stage and kind of cancer diagnosis; dates and types of treatment; names and contact information for all providers and other support team staff with whom the participant worked; recommended follow-up care; potential late effects and other needs/concerns that arose during Navigation.

A similar document was created to summarize abnormal findings for those who had a non-cancer resolution (See Appendix L for samples).

These documents summarized all the relevant information on that participant’s cancer diagnosis or abnormal finding in one place and gave providers a summary of what to look for entering survivorship and we recommend they be included in the chart for all cancer patients.

Care plans such as these have been recommended by the Institute of Medicine, American Society of Clinical Oncology and will be required for the American College of Surgeons’ Commission on Cancer accreditation starting in 2012.

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Positive Changes for Communities

While Navigators had many successes on the individual participant level, most would not be appropriate to share. However, there were many successes at the community level which are described here.

Improving Access to Care

While the original design of the PNRP study conceived of Navigators connecting with existing resources it quickly became clear that, in these rural communities, there were often no resources available for the Navigators to connect with. Rather than accept this situation, Navigators took on the effort to bring new resources to their communities. Navigators have been instrumental in bringing new services and resources since the inception of the pilot project in 2003.(13) This progress has continued in the NTCNP. Navigators increased access to care by working with clinic administration to bring mobile mammography units to their reservations, and identified private foundations which fund mammograms for women who do not qualify under any other program. Navigators usually scheduled about 15 to 20 patients to be screened each month when the van came to the reservation, and provided courtesy letters and reminder phone calls to improve attendance rates. They have also played a role in establishing contracts with the state breast and cervical screening programs to ensure that women who are uninsured can receive standard screenings and the clinic’s underfunded Contract Health Service (CHS) funds are reimbursed for these costs. This is a long, complicated process; however, the Navigators were leaders and advocates for this.

Bringing Support to AI/AN Communities

Navigators responded to a need for cancer support groups within their communities, and in three Tribes they established groups which came into

their own throughout the study. The Navigators attended Native-specific support group trainings and, in the beginning, were very involved in leading the groups. However, as they grew, the groups became self-sufficient and relied less on the Navigators for direction. Navigators continued to arrange speakers for the groups and organize other events. The support group meetings are well attended and tribal members come from hundreds of miles away to participate. After being a part of the support group, a few survivors began to share their stories more widely and became very vocal advocates for cancer prevention and general health of their communities.

Appointment Companion

One of the products from the NTCNP which received the most accolades was the “Appointment Companion”. The Appointment Companion was created by two of the Navigators, Chace Mickelson and Jasen Henderson, along with Eric Vinson from the Northwest Tribal Comprehensive Cancer Program. 71

The Appointment Companion is a small book which cancer patients take with them to appointments to keep track of their health care team, medications, appointments, and other relevant information.

Many similar books have been made available from various sources, but the Navigators found that none were ideally suited for their participants. Thus they created a new version, drawing from the best features of all they had seen and their own participant’s requests.

The guiding parameters for the Appointment Companion were that it should be portable, easy to use, inclusive of all AI/AN cancer patients, at an appropriate health literacy level, and culturally respectful.

The cover used the NTCNP logo but intentionally

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omitted the word “cancer”, so as not to announce the patient’s diagnosis. The format was a 5.5”by 8.5” three ring binder, a small size easy to pack in a purse or bag and allowing for additional pages to be added. Navigators customized each patient’s Appointment Companion with education materials, resources and other information specific to that patient’s diagnosis and treatment.

For more information or to order an Appointment Companion please see Appendix K.

Raising Awareness

Navigators became fixtures in their communities, bringing cancer prevention messages to a wide variety of groups. Presentations and events planned by Navigators were well-attended and led to documented increases in screenings, due in no small part to a number of innovative strategies that Navigators employed to encourage community members to attend.

Examples of these outreach activities including:

• “Block the Sun Not the Fun” skin cancer prevention event, focused on children. Sunscreen distributed.

• Coordinating teams to run in the Relay for Life

• Display booths with recruitment and patient education material in central locations within the clinic and other tribal buildings and at pow-wows and other community events.

• Presentations to students - pre-school and elementary focused on sun safety, older on HPV vaccinations, self-breast exams and testicular self-exams.

• Presentations at elders events, substance abuse recovery programs, schools, to tribal staff and education departments, and inmates at local jails.

• To bring the idea of cancer prevention to the youth of their communities, one Navigator organized essay and poster contests in the schools.

• Media: Navigators wrote many articles for newsletters and tribal newspapers, spoke on local radio stations and in one case even appeared on the national radio program “Native America Calling”

• Navigators partnered with disease prevention and health promotion groups within the clinic to do a weekly mini-events such as “Healthy Tuesday” which included education, wellness activities, run/walks, and healthy breakfasts or lunches.

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• Cancer Awareness Quiz. Navigator created a short quiz about cancer prevention which was handed out to each patient as they checked in. The answers to the questions could be found in the educational displays the Navigator had placed around the waiting room. Patients completed the quiz and dropped it into a box as entry to a raffle. A winner was drawn from those who had all the questions correct.

• After a tribal youth was diagnosed with leukemia, one Navigator partnered with regional organization to hold two bone marrow donor registry drives on the reservation. A representative from the organization was on-site to perform cheek swabs to register tribal members for bone marrow donation.

• Health Fairs. Navigators put on many health fairs during their time at the clinics, which were usually funded through mini grants from the Northwest Tribal Comprehensive Cancer Program. Most provided on-site health screenings such as PSA, blood sugar, cholesterol, blood pressure, eye exams, dental checks, clinical breast exams, FOBT cards and Body Mass Index (BMI) screenings.

• For women’s health days Navigators coordinated with mobile mammography vans to have on-site services available to screen women that day. If this was not possible, the women were scheduled for mammogram appointments that day. One event, billed as a

“pap-a-thon”, brought women into the clinic to do their pap tests that day.

• Booths with information about various health topics and resources available were usually a part of these events, and speakers were brought in to tell personal stories of survival and hope.

• Strategies that were successful in boosting attendance at these events included high value raffle items, tailored to the audience. For men, televisions, tools and fishing gear had a good response. Televisions were also popular with the women, as were crafting items and plants. These were either purchased with the mini-grant funds or donated. Smaller items which worked well as incentives included T-shirts, hats, water bottles, passes to local recreation centers, mugs, planner books, and beaded awareness ribbons. The American Indian Ribbon of Life (a feather shaped as an awareness ribbon, created by the UC Davis Cancer Center American Indian Advisory Council) was also very popular with women.

• One Navigator developed a “punch-card” for the health screenings. Attendees’ cards were punched after each screening they completed. Only those who had all their screenings could then drop their fully-punched card into the bin to be a part of the raffle for the big-ticket item.

HEALTHUpdatedApril 10, 2008

Cancer: Key is preventionBy Leah Hardy, Cancer Patient Navigator

It is interesting that most of us take better care of our vehicles than our bodies. In fact, most of us will take our car in for a routine oil & lube to prevent future costly repairs but put off monthly and annual health exams that can prevent illness or disease. In truth, it is more costly both physically and financially to overcome an extensive illness; Cancer being one of those unexpected incidences. The key here is Prevention and Early Detection.

The American Cancer Society states that colorectal cancer is the third most common cancer for men and women but the second leading cause of cancer-related deaths for both sexes. Many of us are not aware that Colorectal (colon & rectum) Cancer is regarded as one of the most preventable types of cancers simply because it develops slowly. Colon cancer begins with abnormal tissue growths called polyps. Occasionally polyps develop within the colon and if left untreated, may become cancerous. Since polyps develop slowly there is time to find the growth and remove them; several procedures are available to detect polyps with little discomfort.

Certain risk factors may increase your risk of developing colorectal cancer such as tobacco use, alcohol consumption, obesity, a diet high in fat and low in fiber, and inactivity. In its early stage, colorectal cancer may have no symptoms until the disease has advanced. Symptoms may include: Changes in bowel habits — diarrhea or constipation; Rectal bleeding; Blood in or on stool/s; Decreased appetite and/or weight loss; Abnormal weakness or fatigue; Vomiting Persistent abdominal discomfort- cramps or pain. Successful treatment of colorectal cancer is greatest when it is detected early. If you are 50 years and older, you should begin annual screening for colon cancer, but if either of your parents had been diagnosed with colon cancer, you should seek screening ten years ahead of the recommended guideline. It should be noted that colorectal cancer may occur in individuals younger than 50 in either sex and is preventable with a healthy lifestyle. If you have any questions, please contact your health provider. For further information on colorectal cancer contact the Cancer Patient Navigation Program at 238-5435.

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• Another Navigator approached the tribal administration and asked them to grant a few hours of leave to any tribal employee attending the event. Holding the fair in a location central to all the tribal offices allowed employees to have an afternoon off to attend and was very successful. Holding the event in the evening is another alternative that helps with attendance (i.e., “Men’s Night Out”) Providing food was also essential in getting folks out to the events, and this was usually paid for from mini-grant funds.

• Navigators advertised via posters and flyers around the clinic, tribal buildings, local shops and cafes and even above the urinals for a men’s health fair. They promoted the events in the tribal newsletter, radio and signs above the clinic. Word of mouth was important as well.

• Breast Cancer Bingo. Perhaps the most successful and high profile events put on by the Navigators were the breast cancer bingo nights. Three of these events were held. The Navigators coordinated with their tribe’s casino to organize the events. The casino agreed to sell bingo packets at half-off for anyone who wore pink and the packets included not only bingo cards but patient education material and resources. Navigators printed special bingo cards on pink card stock with breast cancer myths and facts printed along side the playing area. The night included several

educational talks throughout

the bingo games, recognition of cancer survivors in the audience, raffles and several contests including best-dressed pink outfit and quizzes and games focused on cancer awareness. Women in attendance were signed up for mammograms. The Navigators collaborated on these events, sharing ideas and strategies to improve the next one. Attendance grew at each event, with the final bingo night attended by over 800 people. At this event the casino agreed to donate some of the profits, resulting in close to $14,000 raised. This money was donated back to the foundations that had provided financial assistance to Navigated participants at that tribe.

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Financial, Housing and Transportation Assistance

Navigators built up essential partnerships with other community groups which they called upon to assist with financial distress, transportation costs and other participant needs. In one case, the Navigator joined a coalition of county resource groups which created a strong network of resources for clinic patients. The same Navigator was also recruited to sit on the county board of commissions. Resources in rural areas are always difficult to come by and NTCNP found that one of the most important underpinnings of a successful Navigation program is a strong network of partners and community linkages on which they can draw.

Transportation is a major challenge in our communities as treatment centers are usually far away, and in these rural communities there is rarely any public transportation available. Navigators obtained gas vouchers for participants, organized free flights through Angel Flight and helped to link participants with shuttle services which provided transport for as little as $1 each way for their participants. The use of Angel Flight was of particular significance for participants who were not eligible for Contract Health Service (CHS) funding. Angel Flights allowed these participants to travel for free to their home Tribe where they could establish CHS eligibility and receive more comprehensive care.

Navigators also worked with a number of different organizations to obtain housing for participants who required extended treatments at cancer centers far from their homes. Also, in some cases participants found themselves facing homelessness due to loss of employment after their cancer diagnosis. One Navigator was able to work with the Tribal Housing organization to move such a participant into suitable housing with subsidized rent.

Finding financial assistance is difficult but NTCNP Navigators tapped in to a number of resources, both local and national. In Oregon, Navigators worked with the Willamette Valley Cancer Foundation, a non-profit out of the local cancer center which provides support for low income patients. Other Navigators made use of Tobacco Tax funds, the Native American Cancer Research Memorial Fund, CancerCare and the Leukemia and Lymphoma society among others.

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Discussion

The NTCNP had many successes, and helped many patients at tribal communities throughout the Northwest. It also faced a number of challenges, and gained vital insight into how best to implement a Navigator program in a tribal community.

It is our hope that the successes of the program may become best practices for future tribal Navigator programs. Community involvement, creating resources, use of appointment companion binders and survivor care plans, inclusivity for enrollment, employing a two-person Navigator team and/or allowing time for the Navigators to pursue additional training and connect with others in their field are all areas in which the program excelled.

There are also several areas where future programs can improve on the NTCNP model. Programs which are armed with a thoughtful branding strategy, a champion identified at each clinic, enrollment beginning at screening and following patients through survivorship, and with a system to identify and track those with screening and follow-up needs carefully considered before launching the program will be poised to succeed.

Based on participant feedback, it is clear that Navigators must have the training to answer patient questions and provide patient education. The importance of giving patients enough time and responding to them in a timely manner should be emphasized in Navigator training.

Statistical analysis of the NTCNP data are limited by the small sample size at the end of the study. An analysis with a very small sample size requires a large effect size to detect statistical significance. Thus, while no difference was found between the study arms at T1 cut off points of 30, 60 or 90 days, it does not necessarily mean that Navigation would not be effective on a larger scale.

However, one finding was statistically significant.

After controlling for confounding and clustering, Navigated participants were more than three times more likely to obtain a definitive diagnosis at one year from abnormal findings. This is important in itself. At Comparison clinics, without Navigator services, around one quarter of participants did not receive any definitive diagnosis with the five-year study period. These patients were lost to the system and the status of their abnormal finding is unknown. The Navigator model seems to be effective in keeping patients in communication with their primary care clinic, preventing loss to follow-up and avoiding the extreme delays in diagnosis that were seen among Comparison participants. This is an essential part of effective cancer screening; high screening rates mean nothing if those who have abnormal results do not go on to receive timely follow-up care and diagnosis.

The tools Navigators used to bring these patients to resolution are the same tools that they would use at earlier points along the care continuum; thus, this finding points to a need for further study of Navigation’s effectiveness. Using the recom-mendations and taking guidance from the lessons learned in the NTCNP, subsequent Navigator programs will be better able to enroll patients early and have a greater impact at the beginning of that time line.

Other limitations that should be considered here include the non-randomized study design and some disparities in relevant characteristics between the study arms, notably the disease status at enrollment, cancer type and severity of diagnosis.

While confounding variables were controlled for in the multivariate model, it is possible that biases persisted. The findings from the NTCNP, while subject to these limitations, are a good starting point on which to base future research on Navigation in Indian Country.

Part 5

Supplemental Materials

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Appendix A: Glossary

• Abnormal finding - results of a cancer screening test which indicate something suspicious that requires further follow up to rule out cancer

• ASCUS (Atypical squamous cells of undetermined significance) - results of a pap test that show slight abnormality in the cells which, in some cases, may go on to become cancer if left untreated.

• Biopsy - a small sample of tissue taken to determine whether or not a suspicious lump or area shows evidence of cancer, and if so what type.

• BMI (Body Mass Index) - a ratio of height and weight used to determine if a person is at a healthy weight for their height.

• CHS (Contract Health Services) - funds used to contract with providers outside of IHS/tribal system for services not available at the IHS/tribal facility.

• CMET (Care Management Event Tracking) - a platform within iCare that allows providers to identify and track patients with screening and diagnostic needs

• Colonoscopy - a screening test during which the doctor looks inside the large intestine. This test can identify pre-cancerous growths or cancer in the colon and rectum.

• Charlson Co-morbidity Index - A score obtained by a computing a weighted sum of co-morbid conditions with which a patient is diagnosed. The conditions and weights used are as follows: Weight of 1: Myocardial infarct, congestive heart failure, peripheral vascular disease, dementia, cerebrovascular disease, chronic lung disease, connective tissue disease, ulcer, chronic liver disease. Weight of 2: Hemiplegia, moderate or severe kidney disease, diabetes, diabetes with complication, tumor, leukemia, lymphoma. Weight of 3: Moderate or severe liver disease. Weight of 6: Malignant tumor, metastasis, AIDS.

• Co-morbid condition - two or more diseases present at the same time.

• Direct-care service or direct-care - services provided at an IHS, tribal, or urban Indian health care facility.

• EHR (Electronic Health Record) - a graphical user interface that allows providers to access RPMS data and medical chart information

• FOBT (fecal occult blood test) - a screening test to check for hidden blood in the stool. The presence of blood can sometimes indicate colorectal cancer, although it can also be caused by many other conditions.

• Guaiac - a type of FOBT using the chemical guaiac to detect hidden blood.

• HPV (human papillomavirus) - a family of common viruses. If infected with certain HPV strains, it can increase the risk for cervical cancer.

• iCare - a software tool that allows providers to create panels of patients using data within RPMS

• IHS (Indian Health Service) - Department of Health and Human Services agency responsible for providing federal health services to American Indians and Alaska Natives enrolled in federally

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recognized tribes.

• Mammogram - an x-ray of the breast to screen for breast cancer

• Pap Test - a screening test for cervical cancer

• PSA (Prostate specific antigen) - a substance produced by the prostate. High levels of PSA may indicate an enlargement of the prostate which may be due to an infection, benign condition or prostate cancer.

• PSA velocity - the rate at which a patient’s PSA value changes over time. A rapidly increasing PSA value may indicate a problem with the prostate, and in some cases prostate cancer.

• RPMS (Resource Patient Management System) - medical database used to record patient information in the Indian Health Service.

• Stage - describes how much the cancer has spread throughout the body. Stage is important because cancers caught at an earlier stage (i.e., less spread) are easier to treat and patients have a higher chance of surviving them.

• VistA Imaging - a component of the EHR system that incorporates scanned reports and images into the patient’s electronic chart

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34. Ferrante JM, Chen PH, Kim S. The effect of Patient Navigation on time to diagnosis, anxiety, and satisfaction in urban minority women with abnormal mammograms: A randomized controlled trial. J Urban Health 2008;85:114-124.

35. Fillion L, de Serres M, Lapointe-Goupil R, et al. Implementing the role of patient-Navigator nurse at a university hospital centre. Canad Oncol Nurs J 2006;16:11-17.

36. Fischer SM, Sauaia A, Kutner JS. Patient Navigation: A culturally competent strategy to address disparities in palliative care. J Palliative Med 2007;10:1023-8.

37. Freeman HP, Chu KC. Determinants of cancer disparities: Barriers to cancer screening, diagnosis, and treatment. Surg Oncol Clinics N Am 2005;14:655-69.

38. Frelix GD, Rosenblatt R, Solomon M, Vikram B. Breast cancer screening in underserved women in the Bronx. J Nat Med Ass 1999;91:195-200.

39. Gabram SGA, Lund MJ, Hatchett N, et al. Effects of an outreach and internal navigation program on breast cancer diagnosis in an urban cancer center with a large African American population. Breast Cancer Res Treat 2006;100:S97-S97.

40. Gabram SGA, Lund MJB, Gardner J, et al. Effects of an outreach and internal navigation program on breast cancer diagnosis in an urban cancer center with a large African-American population. Cancer 2008;113:602-7.

41. Hanna N, Steinberg M, Knapp H, et al. Patient-centered satisfaction measures in a lay Patient Navigator program for underserved populations in oncology. J Invest Med 2008;56:126-126.

42. Hansen K. Volunteer Patient Navigator program. Am J Clin Oncol Cancer Clin Trials 2007;30:446-447.

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45. Jandorf L, Gutierrez Y, Lopez J, Christie J, Itzkowitz SH. Use of a Patient Navigator to increase colorectal cancer screening in an urban neighborhood health clinic. J Urban Health 2005;82:216-24.

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47. Nash D, Azeez S, Vlahov D, Schori M. Evaluation of an intervention to increase screening colonoscopy in an urban public hospital setting. J Urban Health 2006;83:231-43.

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53. Seek AJ, Hogle WP. Modeling a better way: Navigating the healthcare system for patients with lung cancer. Clin J Oncol Nurs 2007;11:81.

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58. Weinrich SP, Boyd MD, Weinrich M, Greene F, Reynolds WA, Jr., Metlin C. Increasing prostate cancer screening in African American men with peer-educator and client-Navigator interventions. J Cancer Educat 1998;13:213-9.

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Appendix C: PNRP Partner Institutions

Natio

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health

The PatientNavigatorResearchProgram (PNRP)

NIH Publication No. 06-6016Printed March 2006

For More Information

For more information about patient navigationor the Patient Navigator Research Program,visit our Web site at http://crchd.nci.nih.gov/initiatives/pnp.

If you have additional questions about PNRP,contact:

Center to Reduce Cancer Health Disparities6116 Executive Boulevard, Suite 602Rockville, MD 20852

P H O N E : 301-496-8589F A X : 301-435-9225

Patient Navigator Research Program Projects

The nine major institutions funded through the PNRP

Boston Medical Center, Boston, MAPI: Karen M. Freund, M.D., M.P.H.Focus: Testing breast or cervical cancer navigation services to women in socially and economically challenged urban neighborhoods, in partnership with community health centers.

Denver Health and Hospital Authority, Denver, COPI: Peter C. Raich, M.D., F.A.C.P.Focus: Providing breast, colorectal and prostate cancer navigation services for minority and underserved patients, many of whom are unin-sured, in partnership with community organizations and cancer centers.

George Washington University, Washington, DCPI: Steven R. Patierno, Ph.D.Focus: Developing city-wide consortium to test and evaluate breast cancer navigation services among African American and Hispanic/Latina women.

H. Lee Moffitt Cancer Center & Research Institute, Tampa, FLPI: Richard G. Roetzheim, M.D., M.S.P.H.Focus: Conducting culturally appropriate patient navigation focused on breast and colorectal cancers in culturally diverse populations, in partnership with the Health Choice Network and ACS.

Northwest Portland Area Indian Health Board, Portland, ORPI: Joshua D. Jones, M.D.Focus: Expanding an existing navigation project into five diverse tribalcommunities and provide breast, cervical, prostate and colorectal cancer navigation services, in partnership with tribal health centers.

Northwestern University, Chicago, ILPI: Charles L. Bennett, M.D., Ph.D., M.P.P.Focus: Providing patient navigation follow-up to low-income patients with prostate, colorectal, breast or cervical cancer, in partnership withVeterans Affairs and federal health center clinics.

Ohio State University Research Foundation, Columbus, OHPI: Electra D. Paskett, Ph.D., M.P.H.Focus: Implementing and evaluating a patient navigation program forbreast, cervical and colorectal cancers in an underserved urban popula-tion, through a consortium of institutions and community partners.

University of Rochester School of Medicine & Dentistry,Rochester, NYPI: Kevin Fiscella, M.D., M.P.H.Focus: Randomized controlled trial to assess whether underservedminority and low-income urban populations with breast and colorectalcancers benefit from navigation services.

University of Texas Health Sciences Center, San Antonio, TXPI: Donald J. Dudley, M.D.Focus: Examining a navigation program for Hispanic/Latina and AfricanAmerican women with breast and cervical cancers, in partnership withuniversity and health clinics and University Hospital.

Northwest Portland Area Indian Health BoardJoshua D. Jones

Northwestern UniversityCharles L. Bennett

Denver Health and Hospital AuthorityPeter C. Raich

University of Texas Donald J. Dudley

University of RochesterKevin Fiscella

Boston Medical CenterKaren M. Freund

Ohio State University*Electra D. Paskett

George Washington UniversitySteven R. Patierno

H. Lee Moffitt Cancer Center &Research InstituteRichard G. Roetzheim

* Funded by the American Cancer Society

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Appendix D: Study Participant Eligibility Criteria

Breast, Cervical, Colorectal & Prostate Cancers

• Abnormal finding on clinical breast exam, Mammogram, Breast Ultrasound, or Breast MRI

• Diagnosis of breast cancer

• Abnormal Pap test result except ASCUS with negative HPV test, visual/suspicious lesion on cervix

• Diagnosis of cervical cancer or precancerous lesion

• Rectal bleeding or blood in stool in patients age 30 or older with referral to specialist

• Positive FOBT or guaiac with referral to specialist

• Palpable rectal mass with referral to specialist

• Abnormal sigmoidoscopy, virtual colonoscopy, double contrast barium enema, or colonoscopy without biopsy

• Diagnosis of colorectal cancer including CIS

• Abnormal DRE requiring referral

• PSA over 4 ng/ml

• PSA < 4 with abnormal PSA velocity requiring referral to or care by a urologist

• Diagnosis of prostate cancer

Other cancers

• Navigators enrolled any patients who had an abnormal finding that was suspicious for cancer or a cancer diagnosis.

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Appendix E: Brief Summary of Variables in the NTCNP Data Dictionary

Clinical Data

Demographics• Gender• Date of Birth• Ethnicity• Primary Language• Employment Status• Zip code• Primary care physician?• History of Navigation• Type of insurance

Co-morbidity – at enrollment, presents with any of the following• Myocardial Infarction• Congestive Heart Failure• Peripheral Vascular Disease• Cerebrovascular Disease• Dementia• Chronic Pulmonary Disease• Connective Tissue Disease• Peptic Ulcer Disease• Mild Liver Disease• Moderate to Severe Liver Disease• Diabetes Mellitus w/o complications• Diabetes Mellitus with complications• Hemiplegia or Paraplegia• Renal Disease• AIDS

For each cancer type• Abnormal Screening tests

o Clinical Breast Exam, Mammogram, Breast Ultrasound, Breast MRIo Pap, Visual/suspicious lesion on cervixo Positive FOBT, gross blood on rectal exam, palpable mass, sigmoidoscopy,

colonoscopy, double contrast barium enema, virtual colonoscopyo PSA, Digital Rectal Exam

• Date/Results of definitive diagnostic testso Pre-existing cancer diagnosis dateo Breast - Excisional biopsy, Stereotactic biopsy, FNA biopsy, Dx Ultrasound, Dx MRI,

Dx mammogramo LEEP, Cervical biopsy, ECC, Colposcopy, Dx Papo Colorectal biopsy, Dx sigmoidoscopy, Dx virtual colonoscopy, Dx barium enema

• Follow-up tests date/results (same tests as diagnostic)• Final Diagnosis – specific cancer diagnosis

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• Consultationo Patient referred to oncologist (medical, radiation, surgical)?o Patient referred to a general surgeon?o Patient referred to gynecologist, gastroenterologist, proctologist or urologist?o Date consultations orderedo Date consultations completed, or reason for not completing

• Clinical Trialso Enrolled?o If yes, date enrolledo Clinical trial agent

• Stagingo Stage at dxo Tumor sizeo Auxiliary node evaluation/number of positive nodeso Sentinel node evaluation/positivity statuso Other lymph statuso Metastasis status, sites metastasized to

• Treatments – recommended? Completed (if so, date)?o Lumpectomyo Mastectomyo External radiation therapy (start date, stop date, #days)o Interstitial radiation therapy (start date, stop date)o Chemotherapy (start date, stop date, #cycles, modified?)o Hormone therapyo Breast reconstructiono Cryotherapyo LEEP o Cone biopsyo Hysterectomyo Colectomyo Proctectomyo Prostectomyo Prostate – watchful waito Hospiceo Palliative care

Navigator Datao Date of Enrollmento Same demographic information as aboveo Date and reason stopped tracking o Insurance/IHS coverage at enrollment, changes during Navigationo For each patient encounter – date, length, location, activities and narrative

Non-Patient Data was also collected including contacts made and meetings held/attended.

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Appendix F: RPMS Search Queries Used

Cancer-related ICD-9 codes – quick reference

Description Code range(s) Notes

Malignant neoplasms 140.0-208.92

Screenable cancers 174.0-175.9, 180.0-180.9, 185, 153.0-154.8

Breast 174.0-175.9

Female breast 174.0-174.9 excludes skin of breast (but includes Pagets) excludes LCIS, DCIS

Male breast 175.0-175.9

Cervix uteri 180.0-180.9 excludes CIS, precancerous conditions

Prostate 185

Colorectal cancers 153.0-154.8

Colon 153.0-153.9

Rectum, rectosigmoid juncture, and anus

154.0-154.8 excludes malignant carcinoid tumors (i.e. carcinoid syndrome, neuroendocrine tumors)

Rectum 154.1

Non-screenable cancers 140.0-152.9, 155.0-173.9, 176.0-176.9, 179., 181., 182.0-184.9, 186.0-208.92

Lung cancer 162.0-162.9

Head & neck cancers 140.0-148.9, 160.0, 160.2-160.5, 161.0-161.9, 195.0, 196.0

includes malignant tumors of areas in the head and neck

excludes brain tumors

Carcinoma in situ and unknown/unspecified neoplasms

230.0 – 239.9

Screenable cancers in situ 230.3-230.6, 233.0-233.4

CIS colon 230.3

CIS rectum 230.4

CIS anus 230.5-230.6

CIS breast 233.0 excludes Pagets, skin

CIS cervix 233.1 includes CINIII excludes CINII or lesser dysplasia

CIS prostate 233.4

Abnormal test results or conditions that may need further follow-up to rule out cancer

Abnormal or unsatisfactory Pap 795.00-795.05, 795.08-795.09, 795.1

Elevated PSA 790.93

Abnormal stool contents 792.9, 578.1, 792.1

Abnormal mammogram or other breast imaging

793.80-793.89

Personal hx of malignant neoplasm V10 Specific types of cancer are distinguished by 4th and 5th digits Family hx of malignant neoplasm V16

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A Step-By-Step Example of an NTCNP RPMS Search

Search #1: Abnormal Results from Problem List DX

Step 1: From any menu prompt, type ^VGEN to jump to the visit report generator

Step 2: At the prompt, hit enter to select “Search All Visits”

Select one of the following:

P Search Template of Patients V Search Template of Visits S Search All Visits R CMS Register of Patients

Select Visit List from: S// <enter>

Step 3: Enter the beginning and ending dates of the period you want to search

Enter Beginning Visit Date for search: 2 1 2007 (FEB 01, 2007)

Enter Ending Visit Date for search: 2 28 07 (FEB 28, 2007)

Step 4: The next screen will be the VISIT Selection Menu. This allows you to SEARCH for patients and/or visits that meet the criteria you specify.

VISIT Selection MenuVisits can be selected based upon any of the following items. Selectas many as you wish, in any order or combination. An (*) asterisk indicatesitems already selected. To bypass screens and select all visits hit Q.

1) Name/Chart #/SSN 51) Visit Location 101) Operation CPT Code2) Sex 52) Service Unit of PT 102) Pain Measurement Valu3) Date of Birth 53) Outside Location 103) RX Ordering Provider4) Birth Month 54) Clinic Type 104) Dental ADA Codes

Select Action: S// S Select Item(s)

At the prompt, enter “S” to Select items.

Select Living Pts and Prob List Dx. Find these items on your list and type the numbers with a comma between (no spaces).

Note: For a historical search may omit the living pts selection.

Beginning and end dates when you want to search

Note - your numbers in the list will differ

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Step 5: Once you have selected the items above, enter the following ICD 9 codes: • 795.00-795.06, 795.08-795.09, 795.10-795.19 (Abnormal or unsat. Pap) • 790.93 (Elevated PSA) • 792.9, 578.1, 792.1 (Abnormal stool contents) • 793.80-793.89 (Abnormal mammogram or other breast imaging) • 610.0-611.9 (Disorders of breast)

Then Q to quit visit selection.

Step 6: Enter D to choose a detailed visit listing.

Select one of the following:

T Total Count Only S Sub-counts and Total Count C Cohort/Template Save D Detailed Visit Listing F Flat file of Area Database formatted records P Unduplicated Patient Cohort/Template L Delimited Output File for use in Excel

Choose Type of Report: D// Detailed Visit Listing or L for delimited file

Step 7: In this step, you will choose which items you want to print out. PRINT ITEM SELECTION MENU

1) Patient Name 66) PCC+ FORM? 131) Measurements2) First, Last Name 67) Visit IEN 132) Pain Measurement Valu3) Chart # 68) Dependent Entry Count (133) RX Ordering ProviderE4) Terminal Digit # 69) Type (IHS,638,etc) 134) Dental ADA Codes

Select Action: S// S Select Item(s)

Type in the numbers for Patient Name, Chart #, Visit Date, Dx code and Diagnosis ICD Narr from your list with commas between (no spaces)

Step 8: This is where you tell RPMS how many spaces you need. For the default, hit <enter>. This is a wide report, so you probably want to shorten.

Enter Column width for Patient Name (suggested: 20): (2-80): 20// 15

Enter Column width for Chart # (suggested: 10): (2-80): 10// 8

Enter Column width for Visit Date (suggested: 10): (2-80): 10// <enter> or 10

Enter Column width for Diagnosis ICD Narr(suggested:10):(2-80):50//<enter> or 47

Total Report width (including column margins - 2 spaces): 80

When you get back to the prompt, type Q to quit print item selection.

Step 9: Select the order in which you want the patients listed. Recommend sorting by Chart # so it is easy to locate the patient’s chart. Enter (3) to sort by the chart #. Say “No” to separate page for each patient.

Note - your numbers in the list will differ

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SORT ITEM SELECTION MENUThe visits displayed can be SORTED by ONLY ONE of the following items.If you don’t select a sort item, the report will be sorted by visit date.

1) Patient Name 42) EDC 83) Eval&Management CPT2) First, Last Name 43) Date EDC Determined 84) Length of Stay3) Chart # 44) Contraception Method 85) Primary Prov Name

Select Action: S// <enter> Select Item(s)

Do you want a separate page for each Patient Name? N// <enter>

Step 10: You can save the search template so that this report can be generated again at any time without having to redo all of this work. At the prompt, enter Yes and give the report a descriptive name such as ABNORMAL CANCER

Would you like a custom title for this report? N// YESDo you wish to SAVE this SEARCH/PRINT/SORT logic for future use? N// YES

Step 11: At this point you can print to your printer or save as a text file. You can make better use of the results in a text file. To save this way, turn on session logging so the output will be saved in a text file. (Example: In net term go to File Session Logging and give the file a name indicating the field you searched and save it somewhere you can find it).

It will now save everything on your screen into that text file until you turn off the session logging.

Step 12: Choose to show the delimited output on the screen

Select one of the following:

S SCREEN - delimited output will display on screen for capture F FILE - delimited output will be written to a file in pub

Select output type: S// S SCREEN - delimited output will display on screen for Capture

Step 13: Hit enter to say “no” to custom title and enter again to exclude demo patients

Would you like a custom title for this report? N// <enter>

Select one of the following:

I Include ALL Patients E Exclude DEMO Patients O Include ONLY DEMO Patients

Demo Patient Inclusion/Exclusion: E// <enter>

Step 14: RPMS will now give you a summary of the report you’ve asked for and prompt you for the device on which to print. A little trick to make sure it doesn’t truncate any of the things you’ve asked to print is to enter the 0;99999;99999 – this tell it you want unlimited height and width (exact number of 9’s doesn’t matter)

VISIT Selection Criteria:

Note - your numbers in the list will differ

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Encounter Date range: JUN 01, 2006 to FEB 28, 2007 Prob List Dx (ANY): A set of ICD Diagnoses codes, including 140.1

REPORT/OUTPUT Type: PRINT Items Selected: Patient Name - column width Chart # - column width Visit Date - column width Prob List Dx (ANY) - column width Diagnosis ICD Narr - column width Total Report width (including column margins - 2 spaces): 10

SORTING Item: Visits will be sorted by: Chart #

DEVICE: HOME// 0;99999;99999

Step 15: Your report will now print. It may take a little while to generate. Once it is finished, remember to go back up to FileSession Logging and uncheck that to turn off the session logging and stop putting everything into your text file. You can now import this file into Excel or editing software of your choice to sort, search, clean, etc.

Search #2: Abnormal Results from Purpose of Visit

Repeat Steps 1 through 3 from above.

At Step 4 (Visit selection menu) the items you want to select are Living Pts and Primary Dx (POV). Find these items on your list and type the numbers with a comma between (no spaces).

Search for the same list of ICD9 Codes:• 795.00-795.05, 795.08-795.09, 795.1 (Abnormal or unsatisfactory Pap) • 790.93 (Elevated PSA) • 792.9, 578.1, 792.1 (Abnormal stool contents) • 793.80-793.89 (Abnormal mammogram or other breast imaging) • 610.0-611.9 (Disorders of breast)

Complete the remaining steps exactly as above, except remember to save the report template with a different name describing this search.

Search #3: Abnormal Results from Diagnosis Code.

Repeat all the same steps as in search #2, except at Step 4 (Visit selection menu) the items you want to select are Living Pts and Diagnosis Code.

Save the report template with a different name describing this third search.

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Appendix G: Details of Navigator Hiring and Training

When first hired, Navigators received an in-depth two day training covering the history of Patient Navigation, human subjects protection, patient communication and decision making, making connections with resources, referrals, database training and reporting requirements. They were also required to complete a cancer 101 training which is specifically geared towards Northwest AI/AN populations, and the National Institutes of Health online training, “Protecting Human Research Participants”. Those who were able also attended two national trainings offered by PNRP. Throughout their time in their positions, the Navigators pursued further professional development at training seminars, conferences and workshops including

• Susan G Komen Grants Training

• Clinician’s Cancer Update at NPAIHB

• Native Navigators and the Cancer Continuum

• People Living Through Cancer - Cancer support group training

• Breast and Cervical Cancer Screening Program

During the biweekly conference calls additional training topics were covered as needs were identified. Approximately 2-3 times per year the group met in person. Prior to these meetings, Navigators were asked to vote on topics on which they wanted additional training. Speakers were brought in to train on these topics. The most commonly requested training topics were finding financial resources, end of life care and coping with burnout and stress.

The Navigators were provided with resource guides and the first few weeks of their job was dedicated to getting to know the leaders of local resource organizations. Most essentially, the Navigators made partnerships with

• Transportation organizations

• State or county breast and cervical programs

• Local providers of imaging, lab and surgical services

• Radiology groups offering mobile mammography

• Local hospitals - in particular other Navigators, social workers or case management, oncology departmentsandcharitycareorfinancialaidoffices

• Tribal social services, housing and employment departments; within the clinic, community health, health promotion and disease prevention, tobacco cessation and other public health staff. This was particularly important if Navigator was not from the tribe

• Urban AI/AN organizations for patients who were treated in the cities

• Other nearby tribes with which to coordinate efforts

• Statemedicaidandmedicareoffices

• Local senior and disabled service organizations

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• State or county human services organizations

• Local food banks and other emergency assistance groups

• Foundations that may have funding available, both locally and nationally

• Local cancer support groups

• Providers of wigs, prosthetics and medical equipment

• Local hospice organizations

Creating good relationships with resources was essential to the Navigators’ success. Effective Navigators were outgoing, engaging people who networked extremely well. It was important to give a good amount of time at the start of the program for the Navigator to develop these relationships. Adding new resources to their network and building on those relationships continued throughout the Navigator’s time in their position although it did become less time consuming as they progressed. It was also very important for the Navigators to “give back” to these partners. For example, Navigators joined community service integration groups, cancer coalitions and community boards. They presented at schools, jails, libraries, health fairs, conferences, workshops and meetings and wrote articles for local papers and newsletters. They helped with fund raising for foundations that regularly provided grants to their participants, and invited providers who worked with their participants to tribal events.

Sample Position Description - Lay Navigator

COMMUNITY NAVIGATOR

Reports to: Clinical director or community health department director

GENERAL FUNCTION: Assist patients and their families in accessing the resources they need to complete prevention, diagnosis, and treatment of cancer. The Community Navigator works for patients as a resource, support person, care coordinator, facilitator, and problem-solver for health care, personal, and social needs.

ESSENTIAL JOB FUNCTIONS:The essential duties and responsibilities regularly assigned to this position include:

A. Patient Navigation for patients referred to the Navigator Program1. Work with patients to identify needs (such as medical coverage, transportation, additional

information, reminders, help with prescriptions, referrals, etc.) that might prevent patients from following recommendations for care.

2. Coordinate with the patient to make a plan for meeting identified needs.3. Take steps required to meet patient needs, which may include:

a. Provide assistance with filling out forms, including medical and applications for financial resources (e.g. DSHS, SSI, WIC, etc.)

b. Locate health educators or educational materials and making them available to patientsc. Facilitate communication between patients and providers; between different providers; or

between families and providersd. Call/contact patients or visiting them to ascertain that they are following physician

recommendations, or if not, to find out why not and how to best meet the needs of the

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patiente. Call/contact patients or visiting them to remind them of important appointments and any

preparation instructions (e.g. fasting)f. Attend consultation appointments with patientsg. Arrange appointmentsh. Call/contact hospitals or cancer care centers to ensure that documentation of patient care

is properly included in clinic chartsi. Provide copies of documentation to patients; help patients organize the documentationj. Contact local, regional, or national organizations for assistancek. Work closely with Contract Health Services, primary care providers, oncologists, social

workers, traditional healers, and others involved in screening or cancer care4. Monitor the charts of patients who require follow-up for abnormal screening results to

ascertain that those patients actually receive the follow-up care5. Contact patients who have missed appointments and resolve barriers to keeping other

appointments6. Assign patients to Nurse Case Manager where appropriate based on past interaction and

caseload7. Document activities [AS APPROPRIATE BY SITE – CHARTING REQUIREMENTS]8. Provide family support, as requested (e.g. hospice care, grievance, and other cultural events)

B. Additional duties relevant to participation in Patient Navigator Research Program1. Read and follow the IRB-approved research protocol involving privacy of clinical participants

and their families.2. Provide detailed documentation of relevant activities in the Navigator Program database and

other measures, as outlined in the research protocol.3. Complete Human Subjects Protection online training module.4. Communicate with Navigator Program staff at the Northwest Portland Area Indian Health

Board (NPAIHB) on a weekly basis, or at other agreed-upon intervals.5. Communicate regularly with program Navigators at the Northwest Tribal Cancer Navigator

Program sites.6. Participate in scheduled conference calls as requested by NPAIHB.7. Participate in training and conferences: a) one nationally-organized training developed by

the NCI; b) regional training yearly; c) one national conference yearly; and d) approximately three project meetings in the Northwest per year. Additional meetings requiring some travel may be arranged.

C. Collaborations and partnerships 1. Regularly seek out new contacts at the local, state, regional, and national level.2. Maintain existing relationships with partners.3. As time allows without sacrificing patient Navigation duties, provide assistance to community

partners.4. Develop and maintain a cancer resource manual.5. Assist support group gatherings of patients and survivors at their request.

D. Outreach 1. Represent the Navigator Program at health fairs and other events as appropriate.2. Assist in efforts to increase the visibility of the Navigator Program, for example in tribal

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newspaper or radio outlets, newsletters, etc.

KNOWLEDGE, SKILLS, AND ABILITIES: Sensitivity to and knowledge of Indian customs, traditions, and culture. Knowledge of procedures and operations of a medical office. Able to interact with patients, families, and staff in a courteous and professional manner. Familiarity with medical terminology, either through work/personal experience or through formal training. Good organizational skills. Familiarity with HIPAA and IRB regulations that protect and ensure client privacy. Willingness to participate in occasional trainings. Current, valid drivers license.

MINIMUM REQUIREMENTS (EDUCATION AND EXPERIENCE): High School Diploma or GED. Proficiency in written and spoken English. Two years experience in a medical office setting. Basic computer skills.

WORKING CONDITIONS: Work is primarily performed indoors in an clinical office setting; although much of the work is performed in the community and may include transporting clients to scheduled appointments and conducting home visits.

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Appendix H: Navigator Databases

Navigation Tracking Database

Navigators recorded information about their activities, the services they provided, and participant encounters in the Navigation Tracking Database. This database was a modification of that used during the Pilot Study, with changes made to conform with the Patient Navigator Research Program (PNRP) data dictionary. When a Navigator initiated contact with a participant (either via mail, phone, or in person), s/he entered minimal identifying information into the intake screen of Navigation Tracking Database. This database was stored locally on the Navigator’s laptop computer and both the computer and the file were password protected. Navigators also kept paper copies of all information stored in the database as a backup (these could be easily printed from the database itself so no double entry was required). These were either kept in files which Navigators kept locked in their offices, or in one case where “shadow charts” were discouraged at the clinic, paper copies were kept in the main patient chart for the clinic.

Encounters

Participant ‘encounters’ are similar to appointments that Navigators had with participants. They were quite flexible in definition and, depending on the participant’s needs, took place at the clinic, as a visit to the participant’s home, over the phone, or the Navigator accompanied the participant to an appointment. Navigators had encounters with the participants themselves, their family or friends, members of the health care team or someone else with whom the participant requested a meeting. The location, length, type of activities and progress notes were recorded for each encounter.

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Referral Database

Keeping track of participants who were referred to the Navigator but were not yet eligible for the study became an issue, and a second database was developed for the Navigators to address this. Here Navigators entered the participant details, what follow-up was needed and when it was due. For example, if the Navigator identified a participant who had a recent screening test but no results, they were entered here with a reminder to check for the results in a week. This database was introduced to the Navigators about half way through the study, when it became clear that there was a need to keep track of referrals. At first the Navigators were very hesitant to use it, concerned that it would add unnecessary work and stating that referrals came from so many different sources, “on the fly” that it would be difficult to remember to sit down and enter each one. However, by a couple of months using this tool all the Navigators embraced it and reported finding it very useful. In future, it would be preferable to expand eligibility to enroll participants before screening, and these databases would be combined into one. Alternatively, new tools such as iCare and CMET, which will be described later, may take the place of these stand-alone tools.

Non-Participant Data

Within the same database, Navigators also recorded their contacts and non-participant meetings, trainings and outreach events. The contact section was particularly important as it prevented new Navigators from having to recreate the resource networks that had been put into place by their predecessors.

Navigator Reports

The database allowed for quick and easy reporting by the Navigators. De-identified data was emailed to research staff with one click, and this was submitted monthly. Research staff ran a diagnostic program on the submissions, as well as reviewing them by hand, and returned a monthly report to the Navigators of any missing or erroneous data found. These issues were expected to be resolved by the next month’s data submission. This process kept Navigators from getting behind on data entry and greatly reduced the number of errors, as well as highlighting areas of the database that were difficult to use, which led to several improvements over the study period.

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Clinical Database

In order to fully characterize the burden of cancer at each clinic, the cancer-related services being provided, and the impact of Navigation, NTCNP collected demographic and clinical data on all Navigated participants. The same data were collected for any participants meeting the eligibility criteria at Comparison clinics. Patients were identified through Q-man and VGEN queries of the clinic’s RPMS database or through Navigator records.

Research staff made multiple visits to each clinic during the study to collect these data. Training of research staff included basic introduction to cancer terminology and common abbreviations, staging and treatment, RPMS and Electronic Health Record (EHR) training, medical coding, and layout of paper charts. They were also trained to read pathology, laboratory and imaging reports. Each researcher carried a medical dictionary, medical abbreviations book, and ICD-9 coding manual.

A list of the variables collected during chart abstraction can be found in Appendix E.

In addition to these variables, research staff kept a list of participant names, clinic health record numbers, dates of qualifying diagnoses or visits, and outcomes (i.e., non-cancer resolution, cancer diagnosis, or no definitive diagnosis).

These lists were left with clinic staff during the course of the study and updated at each visit. At the completion of data collection the lists were left with the clinic to serve as a reference and possibly a starting point for a cancer registry.

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Appendix I: Participant Survey Instrument

Q1. ENTER YOUR INTERVIEWER ID: __ __ __ __

Q2. IS THIS INTERVIEW BEING DONE IN PERSON OR OVER THE PHONE? (Choose one)

1 PHONE

2 IN PERSON

Q3. HAVE YOU REVIEWED THE CONSENT FORM WITH PARTICIPANT AND, IF IN PERSON, OBTAINED SIGNED FORM?

1 Yes

0 No

If Q3 is equal to 0, then skip to Q65.

Q4. ENTER THE PARTICIPANT’S ID: (THIS WILL BE 7 DIGITS LONG, BEGINNING WITH A “5”)

__ __ __ __ __ __ __

Q5. HAVE YOU OBTAINED PERMISSION FROM THE PARTICIPANT TO AUDIO RECORD THE INTERVIEW? IF YES, BEGIN RECORDING NOW

1 Yes

0 No

I’d like to thank you for taking part in this interview. The answers to some of these questions may seem obvious to you, but I need to ask you all of the questions so we can understand your experiences.

Q6. Q1. If you were telling a friend about the Navigator program, how would you describe what a Navigator does?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

Thank you. Now I’d like to know a little about your experiences with medical care before you met the Navigator.

Q7. Q2. Have you ever had any illness that involved multiple visits to the doctor for more than one month? [CLARIFY IF NECESSARY]: (Examples would be diabetes, kidney disease, major injury, chronic conditions or previous cancer)

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1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q7 is not equal to 1, then skip to instruction before Q9.

Q8. [SPECIFY OTHER TYPE OF ILLNESS]

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

Throughout our talk today I’d like you to think about other times you’ve been seen for health problems without a Navigator, and compare that to the time you’ve spent with your Navigator. Now I’d like to ask you about talking to your doctors, nurses and Navigator.

Q9. Q3. Did the Navigator attend any of your appointments with you? 1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q9 is not equal to 1, then skip to Q11.

Q10. Q4. Would you say that having the Navigator at your appointments made talking to your health care provider... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

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Q11. Q5. Did the Navigator give you ideas on how to talk to your health care provider? This could be things like suggesting questions to ask or rehearsing a conversation to have with your health care provider.

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q11 is not equal to 1, then skip to Q13.

Q12. Q6. Did the tips make talking to your health care provider... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Q13. Q7. Have you ever had to make decisions about your health care choices by yourself?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

Q14. Q8. How did you feel about that?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

Q15. Q9. When making decisions about your health, would you say working with the Navigator made you feel... (Choose one)

1 Much less involved

2 A little less involved

3 Made no difference

4 Made you feel a little more involved

5 Or made you feel much more involved?

7 Don’t Know

8 Refuse to Answer

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Q16. Q10. Would you say the information you got from the Navigator made decision making about your health... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Most people find that dealing with a problem on your screening test or a cancer diagnosis can be upsetting. I’d like to talk to you a little about your experience with this.

Q17. Q11. Did having the Navigator listen to you make coping with your cancer journey... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Q18. Q12. Did the Navigator ever refer you to an outside support service like a support group or a counselor?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q18 is not equal to 1, then skip to Q21.

Q19. Q13. What kind of services were you referred to?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

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Q20. Q14. Would you say the referral(s) made coping with your cancer journey... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Q21. Q15. Did the Navigator ever work to bring family members or caregivers close by during your care? This could be working on transportation or a place to stay for these people.

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q21 is not equal to 1, then skip to instruction before Q25.

Q22. Q16. What did the Navigator do? [PROBE ONCE FOR MULTIPLE ANSWERS; CHECK ALL THAT APPLY; DO NOT READ LIST] (Check all that apply)

__ [TRANSPORTATION]

__ [HOUSING]

__ [COMMUNICATION]

__ [OTHER HELP TO BRING FAMILY/FRIENDS CLOSE BY]

__ Don’t Know

__ Refuse to Answer

If Q22D is not equal to 1, then skip to Q24.

Q23. [SPECIFY OTHER TYPE OF TRANSPORTATION HELP]

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

119

Q24. Q17. Would you say having these family members or caregivers nearby made coping with your cancer journey... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Sometimes Navigators work with their patients to make sure their Native cultural beliefs are understood. Common practices might include doing traditional ceremonies before a procedure or allowing family members in the room. We’re going to talk about these things a bit now.

Q25. Q18. Some patients have found that their Native cultural or spiritual beliefs are not understood at some clinics or hospitals. Has this ever happened to you?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q25 is not equal to 1, then skip to instruction before Q28.

Q26. Q19. Can you tell me about that?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

Q27. Q20. Did working with your Navigator make handling cultural differences... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Some patients have challenges that prevent them from getting care. I’d like to ask you a few questions about times when your Navigator worked on these problems. Your Navigator might have made phone calls, helped with paperwork, told you about services, or found ways to pay for your care or other expenses.

120

Q28. Q21. Did you have any problems that made it hard for you to get your care?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

Q29. Q22. Did your Navigator ever work with you to schedule your appointments?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q29 is not equal to 1, then skip to Q31.

Q30. Q23. Did having your Navigator work with you to schedule your appointments make getting your care... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Q31. Q24. Did your Navigator ever work on getting referrals for you? This could be things like working with contract health to get approvals or paperwork. [CLARIFY IF NECESSARY:] (This could be a referral within or outside of the clinic)

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q31 is not equal to 1, then skip to Q33.

Q32. Q25. Did having your Navigator work on getting referrals make getting your care... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

121

Q33. Q26. Did your Navigator ever work with you to find childcare or eldercare?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q33 is not equal to 1, then skip to Q35.

Q34. Q27. And would you say that having your Navigator work on finding child or elder care made getting your own health care... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Q35. Q28. Did your Navigator ever work on finding you a place to stay when you had to be away from home for care?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q35 is not equal to 1, then skip to Q37.

Q36. Q29. Do you feel that having your Navigator work on finding you housing made getting your care... (Choose one)

1 Much more difficult

2 A little more difficult

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Q37. Q30. And did your Navigator ever work on finding you transportation to the hospital or clinic? This would include finding you a ride or a gas voucher.

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q37 is not equal to 1, then skip to Q39.

122

Q38. Q31. Do you feel that having your Navigator work on finding this transportation made getting your care... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Q39. Q32. Have you had any problems with paying for cancer tests and treatments?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q39 is not equal to 1, then skip to Q41.

Q40. Q33. Can you tell me about that?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

Q41. Q34. Did your Navigator ever work on filling out your paperwork or applications for IHS, Contract Health, Medicaid, Medicare or Disability?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q41 is not equal to 1, then skip to Q43.

Q42. Q35. Do you feel that having your Navigator work on filling out paperwork or applications made getting help from these programs... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

123

Q43. Q36. Did your Navigator ever work on finding other ways to make your care less expensive? [CLARIFY IF NECESSARY:] (This could be things like having the hospital reduce the amount you owed, or finding a doctor who charged less.)

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q43 is not equal to 1, then skip to Q45.

Q44. Q37. Would you say that having your Navigator work on finding more affordable care made getting your care... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

Q45. Q38. Did you ever find information on your own that helped you on your cancer journey?

1 Yes

0 No

7 Don’t Know

8 Refuse to Answer

If Q45 is not equal to 1, then skip to instruction before Q47.

Q46. Q39. Would you say that working with your Navigator made finding information on your own... (Choose one)

1 Much harder

2 A little harder

3 Made no difference

4 Made it a little easier

5 Or made it much easier?

7 Don’t Know

8 Refuse to Answer

124

Okay, now I’d like to ask you a few questions about what it has been like working with your Navigator. Please remember all your answers are confidential. Your Navigator won’t know what you say. I’ll read a statement and then I’ll ask if you Strongly Disagree, Disagree, are Undecided, Agree or Strongly Agree with what I’ve said.

Q47. Q40. “When I contacted my Navigator he/she responded to me in a timely manner” Would you... (Choose one)

1 Strongly disagree

2 Disagree

3 Are undecided

4 Agree

5 Or strongly agree with this statement?

7 Don’t Know

8 Refuse to Answer

Q48. Q41. “I feel my Navigator gives me enough time” Would you... [REPEAT SCALE ONLY IF NEEDED] (Choose one)

1 (Strongly disagree)

2 (Disagree)

3 (Are undecided)

4 (Agree)

5 (Or strongly agree with this statement?)

7 Don’t Know

8 Refuse to Answer

Q49. Q42. “My Navigator respects my values and choices” Would you... [REPEAT SCALE ONLY IF NEEDED] (Choose one)

1 (Strongly disagree)

2 (Disagree)

3 (Are undecided)

4 (Agree)

5 (Or strongly agree with this statement?)

7 Don’t Know

8 Refuse to Answer

125

Q50. Q43. “My Navigator can answer my questions or find someone who can” Would you... [REPEAT SCALE ONLY IF NEEDED] (Choose one)

1 (Strongly disagree)

2 (Disagree)

3 (Are undecided)

4 (Agree)

5 (Or strongly agree with this statement?)

7 Don’t Know

8 Refuse to Answer

Q51. Q44. “My Navigator includes my friends and family as much as I would like” Would you... [REPEAT SCALE ONLY IF NEEDED] (Choose one)

1 (Strongly disagree)

2 (Disagree)

3 (Are undecided)

4 (Agree)

5 (Or strongly agree with this statement?)

7 Don’t Know

8 Refuse to Answer

And now I’m going to ask you a few questions about how important certain Navigator activities are to you. I will ask you to respond either: Not at all important, not very important, somewhat important, very important or extremely important

Q52. Q45. How important is it to you to have your Navigator respond to you in a timely manner? (Choose one)

1 Not at all important

2 Not very important

3 Somewhat Important

4 Very important

5 Or Extremely Important?

7 Don’t Know

8 Refuse to Answer

126

Q53. Q46. How important is it to you to feel your Navigator gives you enough time? [REPEAT SCALE ONLY IF NEEDED] (Choose one)

1 (Not at all important)

2 (Not very important)

3 (Somewhat Important)

4 (Very important)

5 (Or Extremely Important?)

7 Don’t Know

8 Refuse to Answer

Q54. Q47. How important is it to you to have a Navigator respect your values and choices? [REPEAT SCALE ONLY IF NEEDED] (Choose one)

1 (Not at all important)

2 (Not very important)

3 (Somewhat Important)

4 (Very important)

5 (Or Extremely Important?)

7 Don’t Know

8 Refuse to Answer

Q55. Q48. How important is it to you to have a Navigator who can answer your questions or find someone who can? [REPEAT SCALE ONLY IF NEEDED] (Choose one)

1 (Not at all important)

2 (Not very important)

3 (Somewhat Important)

4 (Very important)

5 (Or Extremely Important?)

7 Don’t Know

8 Refuse to Answer

127

Q56. Q49. How important is it to you to have a Navigator include your family and friends as much as you would like? [REPEAT SCALE ONLY IF NEEDED] (Choose one)

1 (Not at all important)

2 (Not very important)

3 (Somewhat Important)

4 (Very important)

5 (Or Extremely Important?)

7 Don’t Know

8 Refuse to Answer

And finally, I’m just giong to ask a couple questions about your overall impressions of the program.

Q57. Q50. Overall, would you rate the Navigator program as... (Choose one)

1 Or terrible?

2 Poor

3 Fair

4 Good

5 Excellent

7 Don’t Know

8 Refuse to Answer

Q58. Q51. Can you tell me a little about why you felt the program was [Response to Q57]?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

Q59. Q52. If someone you cared about became sick, how likely would you be to recommend them to the Navigator program? Do you think you... (Choose one)

1 Or definitely would not recommend a Navigator?

2 Probably would not

3 Maybe, maybe not

4 Probably would

5 Definitely would

7 Don’t Know

8 Refuse to Answer

Q60. Q53. What was the most important thing to you about the Navigator program?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

128

Q61. Q54. What else should the Navigator Program do to help you with your health care?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

Q62. Q55. We would like to use your ideas to improve the Navigator Program. Do you have anything else you want to share?

__ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __ __

Great! That completes the interview. Thank you so much for your time. Do you have any questions before we finish up for the day?

129

Appendix J: Information Sheet

Coordinating cancer care and outreach from screening through diagnosis, treatment, and resolution.

The Navigator is a person who works with you to make sure you get health care. And if you need it, treatment for cancer. Some Navigators are nurses. Others are community members. Navigators have special training to help people with their cancer care.

Navigators already help people get good care in many places. The Northwest Tribal Cancer Naviga-tor Program is a project to see if Navigators work for Northwest Indian communities.

If you work with the Navigator, you may be asked to share information about your cancer journey with researchers. You do not have to share; the Navigator will work with you even if you do not share your information.

Clients meet with the Navigator to make choic-es and solve problems in their cancer journeys.

Some people need help with:

Information on cancer Managing medicine Figuring out how to pay for services Finding a way to get to your appointments Making appointments Talking with doctors Family needs

The Navigator Program cannot pay for services. Instead, we will try to connect you with other groups that can.

For you - The Navigators are for all patients at the <<<CLINIC NAME>>> who have cancer—or who have screening tests or symptoms that mean they could have cancer.

To contact a Navigator, call <NAVIGATOR> at <<<PHONE #>>> You can also visit the clin-ic during regular hours and ask to talk to the Navigator.

This project is sponsored by The Confederated Tribes of Grand Ronde, The Shoshone-Bannock Tribes, The Confederated Tribes of Siletz Indians, The Yakama Nation, and The Northwest Portland Area Indian Health Board with funding from the National Cancer Institute.

Please Read Other Side

130

If you have any questions about:

The Northwest Tribal Cancer Navigator Program is part of a national study paid for by the National Cancer Institute, a federal agency in Washington, D.C. The study will show if these programs help patients.

We have talked with your Tribe’s leaders. They have agreed that this study may be helpful. With your permission we will collect information from your clinic and you about your cancer journey. This information will be grouped as part of a bigger study. Some of the results will be put in public articles and talks.

The clinic will NOT share your address, or anything that names you. Only information about your care will be shared. It will only be used for this study. We believe there is a very low risk that anyone would be able to identify you from this information.

The Navigator may ask you to complete some surveys about your quality of life and the services that you have gotten from the clinic. You do not have to do these if you do not want to.

We thank you for any information you share with us. You can see the Navigator for free, even if you do not want your information shared.

If you do not want to share your information, please tell your Navigator. You can also call Matthew Town for free at 877-664-0603. You can also change your mind at any time.

The project, call <NAVIGATOR> at <PHONE #> or Matthew Town, Pro-ject Director, at 1-877-664-0603 (toll free number). You can also visit <NAVIGATOR> at <NAVIGATOR>

Your rights or concerns, call Rena Gill, Co-Chair, Portland Area Indian Health Service Institutional Review Board, at 503-326-2014. She is not involved with this project and is responsible for making sure it is conducted in an ethical way.

131

Appendix K: Patient Appointment Companion

The Appointment Companion is a product of the NTCNP and the Northwest Tribal Comprehensive Cancer Program (NTCCP) that was designed to aid cancer patients in their cancer journey.

The format is a small three ring binder with the following sections:

• List of provider contacts: Record contact information for all providers the patient deals with, including business card pockets to organize cards.

• List of medications: A color coded sample explaining how to read a medication label along with space to record pertinent information about each medication the patient is taking.

• Questions to ask your health care team: A question coaching list such as was used by the NTCNP Navigators. These are to aid the patient in knowing what to ask and also includes space to write down their own questions so they don’t forget to ask them.

• Ways to treat cancer: This section allows the Appointment Companion to be customized and relevant to the patient’s specific cancer. Navigators print out patient education materials which apply to the patient’s own diagnosis and treatment.

• Calendar: A simple monthly calendar to track appointments, support group meetings, etc. New pages can be printed out to keep up to date.

• Dates to remember: An area to take notes at each appointment along with a symptom tracker to aid in accurate reporting of symptoms and side effects to the provider at each appointment.

• How to find your way to the cancer center: Navigator prints off directions and addresses for the clinics, hospitals and cancer centers the patient needs to visit.

• Notes/Journal: Ruled pages for free form notes and patient thoughts.

• Resources: A list of useful national resources available to all cancer patients as well as an area left blank for local and diagnosis specific resources, to be completed by the Navigator.

The Appointment Companion is available free through the Northwest Tribal Comprehensive Cancer Program

Please visit this web site to order your copy:http://www.surveymonkey.com/s/AppointmentCompanionOrder

132

Appendix L: Survivorship Care Plans

Abnormal Test Follow Up Plan and Summary

Adapted from ASCO treatment plan. Important caution: this is a summary document whose purpose is to review the highlights of the cancer treatment for this patient. This does not replace information available in the medical record, a complete medical history provided by the patient, examination and diagnostic information. To access the original treatment summary created by the American Society of Clinical Oncology please visit their website at www.asco.org

Page 1 of 2

See over for comments

<<<CLINIC NAME>>>This Plan and Summary is a brief record of major aspects of an abnormal symptom or test.

This is not a complete patient history or comprehensive record of intended therapies.

Patient name: HRN: Patient DOB:(___/___/___)

Prepared by: Date prepared: ( / / )

PCP: Support contact name:

Support contact relationship: Support contact phone:BACKGROUND INFORMATION

Type of abnormal test or suspicious symptom (first):

Date of abnormal test or symptom: (___/___/____)

Specific abnormal test result (i.e., BIRADS, Pap result, PSA level):

Family history/predisposing conditions:

Major co-morbid conditions:

Has patient had any follow up testing? □ Yes □ NoIf No, what is the recommended follow-up?

Date scheduled: (___/___/____)

SUMMARY OF FOLLOW UP TESTINGType of test Date of Test Result of Test Recommended Next Step

(___/___/___)(___/___/___)(___/___/___)(___/___/___)(___/___/___)

OUTSIDE PROVIDER CONTACT INFORMATION Provider Type: Provider Type:

Name: Name:Facility: Facility:Contact Info: Contact Info:

Provider Type: Provider Type:Name: Name:Facility: Facility:Contact Info: Contact Info:

Needs or concerns:□ Prevention and wellness: _________________________

□ Genetic risk: ___________________________________

□ Emotional or mental health: _______________________

□ Personal relationships: ___________________________

□ Fertility: _______________________________________

□ Financial advice or assistance: _____________________

□ Other: _________________________________________

Referrals provided:□ Dietician□ Smoking cessation counselor□ Physical therapist or exercise specialist □ Genetic counselor □ Psychiatrist □ Psychologist□ Social worker □ Fertility specialist or endocrinologist □ Other: _______________________________________

133

Cancer Patient Summary Page 1 of 2<<CLINIC NAME>>

The Treatment Plan and Summary is a brief record of major aspects of cancer treatment.This is not a complete patient history or comprehensive record of intended therapies.

Patient name: HRN: Patient DOB: ( / / )Prepared by: Date prepared: ( / / )PCP: Support contact name:Support contact relationship: Support contact phone:

BACKGROUND INFORMATIONSymptoms/signs:Family history/predisposing conditions:Major co-morbid conditions:Cancer type/location: Diagnosis date: ( / / )Test which led to definitive diagnosis:Is this a new cancer diagnosis or recurrence?: □ New □ Recurrence (date: / / )

STAGE AT DIAGNOSIS CURRENT STAGE (LEAVE BLANK IF SAME)T stage: N stage: M stage: T stage: N stage: M stage: Stage: □ I__ □ II__ □ III__ □ IV__ □ Recurrence Stage: □ I__ □ II__ □ III__ □ IV__ □ Recurrence Alternative staging system: Alternative staging system: Location(s) of metastasis or recurrence (if applicable):

TREATMENTSurgery: □ Not planned □ Planned□ Completed

Intent:□ Diagnosis only □ Palliative resection□ Curative resection

Location of surgery:

Date completed (or scheduled): ( / / )

Chemotherapy: □ Not planned □ Planned□ Completed

Intent:□ Neoadjuvant □ Adjuvant□ Curative□ Palliative

Name of Chemotherapy regimen:Chemotherapy start date (or scheduled to start): ( / / )Chemotherapy end date: ( / / )# of Cycles of Chemotherapy:

Radiation Therapy: □ Not planned □ Planned□ Completed

Intent:□ Neoadjuvant □ Adjuvant□ Curative□ Palliative

Type of radiation (external or interstitial):Region treated:Radiation dose:Date initiated (or scheduled to start): ( / / ) Date completed: ( / / )

Additional TherapiesDrug name: ____________________________ Date started (or to start):( / / ) Drug name: ____________________________ Date started (or to start):( / / ) Drug name: ____________________________ Date started (or to start):( / / ) Side Effects Experienced During Treatment :

ONCOLOGY TEAM MEMBER CONTACTS SURVIVORSHIP CARE PROVIDER CONTACTSPrimary Medical Oncologist Provider Type:

Name: Name:Facility: Facility:Contact Info: Contact Info:

Provider Type: Provider Type:Name: Name:Facility: Facility:Contact Info: Contact Info:

Provider Type: Provider Type:Name: Name:Facility: Facility:Contact Info: Contact Info:

Provider Type: Provider Type:Name: Name:Facility: Facility:Contact Info: Contact Info:

134

Cancer Patient Summary Page 2 of 2

<<CLINIC NAME>>The Treatment Plan and Summary is a brief record of major aspects of cancer treatment.

This is not a complete patient history or comprehensive record of intended therapies.FOLLOW-UP AND SURVIVORSHIP CARE

Follow up care When/How Often? Coordinating ProviderMedical oncology visitsLab testsImaging

Potential late effects of treatment(s): □ Hair Loss □ Nausea/Vomiting □ Neuropathy □ Low Blood Count □ Lymphedema □ Fatigue □ Menopause Symptoms □ Cardiac □ Other:

Needs or concerns:□ Prevention and wellness: _________________________

□ Genetic risk: ___________________________________

□ Emotional or mental health: _______________________

□ Personal relationships: ___________________________

□ Fertility: _______________________________________

□ Financial advice or assistance: _____________________

□ Other: _________________________________________

Referrals provided:□ Dietician□ Smoking cessation counselor□ Physical therapist or exercise specialist □ Genetic counselor □ Psychiatrist □ Psychologist□ Social worker □ Fertility specialist or endocrinologist □ Other: _______________________________________

Comments

Adapted from ASCO treatment plan. Important caution: this is a summary document whose purpose is to review the highlights of the cancer treatment for this patient. This does not replace information available in the medical record, a complete medical history provided by the patient, examination and diagnostic information. To access the original treatment summary created by the American Society of Clinical Oncology please visit their website at www.asco.org

135

Appendix M: Resources - For Cancer Patients

Organization

Address

Phone

E-m

ailW

eb addressServices

Financial Assistance

Willam

ette Valley Cancer Foundation2700 SE Stratus Ave Suite A  McM

inville,   OR 97128 

503‐435‐6592Kelly.M

cGraw

@TriadHospitals.com

Financial Aid for cancer patients of Willam

ette Valley Area 

Colorectal Care Line Financial Aid Fund421 Butler Farm

 Road          Ham

pton, Virginia 236661‐866‐657‐8634

CCL@patientadvocate.org

http://www.colorectalcareline.org/fund.php

Financial Aid for patients with colorectal 

cancer

BTS CARES financial assistance1‐800‐770‐8287

Financial assistance for patients with Brain 

tumors 

Northw

est Sarcoma Foundation

2065 NW M

iller Road                  PM

B #404                                      Portland, O

R 97225503‐8103713   

melissa@

nwsarcom

a.orgwww.nw

sarcoma.org

Provides financial support and patient education

Native Am

erican Cancer Research Mem

orial Fund

3110 South Wadsw

orth              Suite 103                                Denver CO

 80227 

303‐975‐2449          303‐975‐2461          1‐800‐537‐8295

NatAm

Rose@aol.com

Provides financial assistance to Native 

American cancer patients

Transportation Services

Angel Flight West

 3161 Donald Douglas Loop South ,                                    Santa M

onica, CA 90405 1‐888‐426‐2643   310‐ 390‐2958

info@angelflightw

est.orgwww.angelflightw

est.orgFree non‐em

ergency air travel for children and adults w

ith serious medical conditions

Ride Connection3030 SW

 Moody Ave, #230  

Portland,  OR 97201

503‐226‐0700          503‐528‐1738

jnetzer@rideconnection.org

www.rideconnection.org

Quality transportation services for elderly 

and people with disabilities

Patient Education & Support

Cancer Care Nothw

est601 S. Sherm

an,                           Spokane, O

R 99202

1‐800 ‐866‐9809      509‐228‐1000          509‐228‐1300

www.cancercarenorthw

est.comCancer center providing com

prehensive cancer care in N

orthwest area

Leukemia and Lym

phoma Society 

1311 Mam

aroneck Ave,          Suite 310                                       White Plains, N

Y 10605503‐245‐9866          1‐800‐ 955‐4572

infocenter@lls.org

http://www.lls.org/

Patient Education and Services for blood cancer patients

Children’s Cancer Association 433 N

W 4th Ave, Suite 100, 

Portland,  OR  97209

503‐244‐3141          office@JoyRX.org

http://www.joyrx.org/

Resources to seriously ill children and fam

ilies of Oregon and SW

 Washington

Spirit of Eagles 

Teresa Guthrie,                        

1100 Fairview Ave.                 

No., J2‐400 P.O

. Box 19024   Seattle,  W

A 98109 206‐ 667‐7593 

tguthrie@fhcrc.org

www.nativeam

ericanprograms.org/index‐spirit.htm

lNCI funded organization, provides 

education, research and training

Yakama O

ffice of Native Cancer Survivership

P.O. Box 412                         

White Sw

an, WA 98952

509‐ 949‐7739     509‐ 865‐5121

Pike@yakam

a.comProvides services and support for cancer patients

Native People's Circle of H

ope9770 SW

 Ventura Ct             Tigard, O

R 972231‐877‐773‐8248  503‐ 970‐8004

npcoh@spritone.org

www.nativepeoplescoh.org

Serves cancer survivors and their families in 

Northw

est area

Mid Valley Cancer Care Com

munity

880 Winter Street                    

Salem, O

regon 97301           503‐391‐4417

mccom

munity@

qwestoffice.net

Serves cancer patients receiving treatment 

and cancer survivors

Gilda's Club Seattle

1400 Broadway                            

Seattle, WA 98122

206‐709‐1400 info@

gildasclubseattle.orgwww.gildasclubseattle.org

Provides support and education for cancer patients

136

Appendix I: Resources - Navigation and Support Groups

Navigator Services

Tribe

Contact P

ersonP

honeE

-mail

Web address

Services

Shoshone‐BannockMichelle Paul

208‐238‐5430 ext.3938

michelle.paul@

ihs.govhttp://w

ww.shoshonebannocktribes.com

/tribalhealth/trib al_health.htm

l#cancerSouth Puget Intertribal Planning Agency (SPIPA)

Heidi Brown

(360)462‐3234 hbrow

n@spipa.org

Navigation for colon cancer patients

Cancer Support groups

Organization

Address

Phone

E-m

ailW

eb addressServices

Nixyaaw

ii Multi‐Feather Cancer Support G

roupLaura Allen, PO

 Box 160 Pendleton O

R 97801541‐278‐7556

lallen@yel.portland.ihs.gov

Meets the third Tuesday of every m

onth

Tillicum Siletz Cancer Support G

roup200 G

wee‐Shut Rd Siletz O

R 97380

1‐800‐648‐0449Meets the second Tuesday of each m

onth

Lummi Breast Cancer Support G

roup

Beth D. Boyd MSW

, 2592 Kw

ina RoadBellingham

, WA 98226

360‐384‐0464BethB@

lummi‐nsn.gov