Survivorship ProgramSurvivorship Program

Debra HesseSurvivorship Program CoordinatorSt. Mary’s Regional Cancer Center

St. Mary’s Regional Cancer CenterSt. Mary’s Regional Cancer CenterGrand Junction, ColoradoGrand Junction, Colorado

• Many of our patients drive 2 or 3 hours for their cancer care• Approximately 13% of our patients are Spanish speaking only• We serve 1200 new cancer patients annually• Medical Oncology has 21,000 clinic visits per year (8 physicians)• Radiation Oncology has 16,000 clinic visits every year (3 physicians)

The Vision of the The Vision of the Lance Armstrong FoundationLance Armstrong Foundation

• In 2006 the Lance Armstrong Foundation funded 15 Survivorship Programs through the LIVESTRONG Survivorship Center of Excellence Network– Dana-Farber Cancer Institute, Boston– Fred Hutchinson Cancer Research Center, Seattle– Jonsson Comprehensive Cancer Center, Los Angeles– Memorial Sloan-Kettering Cancer Center, New York– University of Colorado Cancer Center, Denver

• With a 5-year grant to pay the salary of a full-time Survivorship Program Coordinator

Community Affiliates of the LIVESTRONG Survivorship Centers of Excellence in Colorado

Denver

Pueblo

Grand Junction

You probably already have a You probably already have a “Survivorship Program”“Survivorship Program”

• Look around your cancer center and identify what you already have in place

• Starting small builds a stronger foundation• What do you offer that does not involve medicine?• Take what you have and build on it• Find out who is “with you” and would benefit from a

stronger survivorship program – social worker, spiritual care, one of your doctors, someone in leadership – and start building a “Resource Team”

Cancer Resource CenterCancer Resource CenterKnowledge Is PowerKnowledge Is Power

• Fill shelves with free educational literature:– National Cancer Institute, Cancer Care, American Cancer Society– www.broadart.com has “plastic Princeton files”

• Offer books that can be loaned out:– Books on diet and nutrition are most popular– www.demco.com has library check-out cards and card pockets

Cancer Resource CenterCancer Resource Center

• Free hats and scarves (I have patterns that I can send)

• Computer with internet access for patients

• “Book Exchange” shelf: donate and/or take books

Health Focus of the Month Health Focus of the Month Educational DisplayEducational Display

• Find a table or counter in a common area (lobby) and every month set up a display that will focus on top areas of concern, with posters and free educational brochures:– Jan = bladder, Feb = kidney, Mar = colorectal, Apr = oral-head-

neck, May = melanoma, Jun = cancer warning signs, Jul = blood cancers, Aug = gynecologic cancers, Sep = prostate and testicular, Oct = breast, Nov = lung, Dec = care giving and holiday stress

• www.healthedco.com has 4 panel boards; about $100 each

Puzzle TablePuzzle Table

• Set up a table where visitors can work on a puzzle: it’s relaxing, and they are “doing” something

• A volunteer glues them into a poster. After being on display for a week, I let anyone take them home

• Set up a “Puzzle Exchange” near the puzzle table

Support and Education GroupsSupport and Education Groups• Are any groups offered?• Are they successful (attended by 4 or more)?• Consider starting a group

– What is greatest need or your largest patient group (ie, breast, prostate)– What topic is most inviting – yoga, book club, smoking cessation– Who will lead – establish facilitator standards, for pay or volunteer– What time of day – during work day or after work, who is your audience– Where will they meet – on campus or off campus (can be less threatening)– How will you promote the new group– Commit to 1 year before you decide to stop meeting

MACHO – Men Against Cancer Helping Others

St. Mary’s Cancer CenterSt. Mary’s Cancer CenterSupport and Education GroupsSupport and Education Groups

• Art Exploration: 2nd & 4th Monday, 4:00-5:30 pm• Breast Friends: 3rd Tuesday, 5:30-7:00 pm

• Healing Hands (Therapeutic Touch): every Thursday, noon-1:00 pm• Leukemia, Lymphoma, & Myeloma: 2nd Thursday, 4:00-5:30 pm

• Look Good, Feel Better: last Wednesday, 2:00-4:00 pm• MACHO Men: 2nd & 4th Wednesday, 5:00-6:30 pm

• Living Well After Treatment: 3rd Monday, 4:00-5:30 pm• Relaxation Meditation: every Wednesday, 12:15-1:00 pm

• Yoga Hour: every Monday, 5:45-7:00 pm

Consider Offering a RetreatConsider Offering a Retreat• Can be done easier than committing to a monthly group• Consider a 1-day retreat at an outdoor location that you

can drive to in 30 minutes• We have done a retreat from 9 am to 3 pm with a 2-hour

workshop, 2-hour lunch, and 2-hour workshop• Offer carpooling

Healing Canyons RetreatsHealing Canyons Retreats• Still Life: photography, journaling, flower pounding,

tai chi, water color, meditation, story telling, care giving; Men’s: Talk with a Doctor; Women’s: Sexuality and Intimacy

Art TherapyArt Therapy

• May 2007 – Lilly Oncology on Canvas: Expressions of a Cancer Journey

• Art Exploration Class: twice a month with a different teacher and medium

• Art Exhibits: every other month set up 25 easels

Volunteers Make the Wheels Go Around!Volunteers Make the Wheels Go Around!• Our volunteer force went from 6 to 40, over 5 years• Key is the right person to interview, train, and maintain

them– Our volunteers: are lay patient navigators, order and put away

library materials, get lunch or warm blankets or drinks for patients, Pet Therapy Dog visitors, visit patients who are on their first or last treatment and give them their gifts (hand-made lap robe or Chinese take-out box), give free 30-minute massage, play the harp in the lobby, lead the yoga class, glue puzzles into posters, provide support for office staff, put up holiday decorations, and generally make everyone in the Cancer Center smile really big!

Community OutreachCommunity Outreach• Health Fairs, Skin Cancer Screening, Community Education Talks

What’s Next?What’s Next?

• We are actively working on transitioning into a Nurse Navigator model utilizing a distress scale to identify our patients that should access more services

• We are actively working on the implementation of EMRs to include the data points of a treatment summary and care plan into our new software

• We are trying to determine the best way to close the loop, so our patients can transition their care from their oncologist back to their primary care physician

St. Mary’s Regional Cancer CenterSt. Mary’s Regional Cancer Center a a LIVE LIVESTRONGSTRONG Survivorship Center of Excellence Survivorship Center of Excellence

Community Affiliate of the University of Colorado Cancer Community Affiliate of the University of Colorado Cancer Center Cancer Survivorship Program, member of the Center Cancer Survivorship Program, member of the

LIVELIVESTRONGSTRONG Survivorship Center of Excellence Survivorship Center of Excellence NetworkNetwork

Debra Hesse, Survivorship Program Coordinatordebra.hesse@stmarygj.org

970.298.2351

Cancer Survivorship ServicesCancer Survivorship ServicesJohn Muir HealthJohn Muir Health

Meeting the Needs of Cancer Survivors; Meeting the Needs of Cancer Survivors; Throughout Treatment and BeyondThroughout Treatment and Beyond

Rachelle Portner, RN, BSN, BASurvivorship Nurse Navigator

John Muir Cancer Institute

John Muir Health (JMH) John Muir Health (JMH) Cancer ServicesCancer Services

• Community-Based Hospital System– Two Campuses: 705-bed capacity– Inpatient Cancer Treatment Services – Infusion Center– Surgery Center – Outpatient Radiation Oncology Services (~800 new patients

per year)– Diagnostic Imaging– 7 Nurse Navigators:

• Brain Tumor & Neuro-oncology • Gastrointestinal• Gynecological• Breast• Thoracic (lung/esophageal)• Survivorship• Urology

Distress Screening Distress Screening Survivorship Care PlanSurvivorship Care Plan

Treatment SummaryTreatment SummaryWhy is this so important?

Two Pivotal Reports on Two Pivotal Reports on Survivorship CareSurvivorship Care

2005:

• Institute of Medicine released the report entitled From Cancer Patient to Cancer Survivor: Lost in Transition – The report recommended that patients have a comprehensive care summary

and follow-up plan at the end of treatment to reduce the possibility of getting lost in the transition from the care they received during treatment through the phases of their life or stages of their disease course

2007: • Institute of Medicine released the report entitled Cancer Care for the Whole

Patient: Meeting Psychosocial Health Needs– Emphasized the importance of screening patients for distress and

psychosocial health needs, referral for appropriate provision of care, and systematic follow-up and re-evaluation

Phase II: New ACoS/CoC Phase II: New ACoS/CoC Standards for 2012Standards for 2012

• Standard 3.2: Psychosocial Distress Screening– The cancer committee develops and implements a process

to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care as the standard for patients with cancer

• Standard 3.3: Survivorship Care Plan– The cancer committee develops and implements a process

to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. The process is monitored, evaluated, and presented at least annually to the cancer committee and documented in minutes

ACoS = American College of Surgeons; CoC = Commission on Cancer.

John Muir Health Survivorship John Muir Health Survivorship Services; GoalsServices; Goals

• Acknowledge that the end of treatment can be a time of both physical and psychological challenges

• Develop a program to decrease psychological distress and address physical and practical side effects of treatment

• To support each patient in achieving the highest possible quality of life after treatment

Survivorship Program Survivorship Program Implementation (Phase I)Implementation (Phase I)

• Introduction to Survivorship Services reduces anticipatory distress

• Quality of Life Assessment at end of treatment

• Survivorship Care Plan to address patient’s needs

• Patient meeting with Survivorship Nurse Navigator to review care plan

• Treatment Summary from managing physicians

• Patients may come in for further one-on-one assistance as needed

Lessons LearnedLessons Learned• Not all patients need full survivorship services, yet all patients take

same time at exit appointment

• Some assessments don’t reveal true needs of the patient

• One-on-one was very important (one patient’s 3 is another patient’s 7)

• Needs present during treatment phase are not addressed (no assessments, only clinical observation). Patients don’t always tell nurse/radiation therapist about needs

• Survivorship assessments and care plan not getting to medical oncologists, primary care physicians

• Treatment summary not getting to patient• Many physicians have very little understanding of needs of cancer

survivors• Patients’ feelings of uncertainty and fear often override all else

Phase II: New ACoS/CoC Phase II: New ACoS/CoC Standards for 2012Standards for 2012

• Standard 3.2: Psychosocial Distress Screening– The cancer committee develops and implements a process

to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care as the standard for patients with cancer

• Standard 3.3: Survivorship Care Plan– The cancer committee develops and implements a process

to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. The process is monitored, evaluated, and presented at least annually to the cancer committee and documented in minutes

Process RequirementsProcess Requirements

• Institutions can choose: – When and who will perform the screening

• “Pivotal medical visit”• Oncology care team

• What screening tool to use – (Must be a standardized, validated tool and

confirms the presence of physical, psychological, social, spiritual, and financial support needs)

NCCN Distress Screening ToolNCCN Distress Screening Tool

NCCN = National Comprehensive Cancer Network.

Patient:Date:

How are you doing today?How are you doing today?

Process Requirements (cont.)Process Requirements (cont.)

• Assessment and Referral Guidelines– Patients whose screening reveals clinical evidence

of moderate or severe distress (level 4 or more on distress scale, as defined by NCCN guidelines) will be evaluated by their oncology team (managing physician, nurse navigator, nurse, oncology social worker) and be connected to the appropriate referral for care

Distress Screening I: Beginning of Distress Screening I: Beginning of Treatment in Radiation OncologyTreatment in Radiation Oncology

Distress Screening II: One Week Prior to Distress Screening II: One Week Prior to Last Treatment in Radiation OncologyLast Treatment in Radiation Oncology

Process Requirements (cont.)Process Requirements (cont.)

• Documentation:– Screening, referral/provision of care, and follow-

up are documented in the patient medical record to facilitate integrated, quality care

• JMH Process: – Documentation to made in the JMH electronic

medical record and includes all Distress Screening documentation, Quality-of-Life Assessment, the patient’s Survivorship Care Plan

Treatment Summary/Treatment Summary/Care Plan for Distress Level <4Care Plan for Distress Level <4

Treatment Summary/Care Plan (cont.)Treatment Summary/Care Plan (cont.)

Survivorship Patient FlowSurvivorship Patient FlowIdentification of patient needs for Survivorship Services through distress screening

Initiate Quality-of-Life Assessment to patients within 1 week of completion of treatment

Consultation with Survivorship Nurse Navigator

Initiation of Survivorship Care PlanReview assessments with

patient, including acute and ongoing needs

Treatment Summary

Activation of JMH referrals and services for acute needs

Referral to community-based resources as needed

Cancer Support Community

Other community-based resources

Rehabilitation Services

Psycho/Social Services

Nutrition Services

Introduction of survivorship services to patient by nurse navigator

Managing Physician/Oncology Care Team Communication via Nurse Navigator and/or Patient

Pastoral Care

Sample “Quality-of-Life AssessmentSample “Quality-of-Life Assessment for Cancer Survivors” for Cancer Survivors”

(4 Domains of Quality of Life)(4 Domains of Quality of Life)

Survivorship Care Plan for Survivorship Care Plan for Distress Level >4Distress Level >4

Plan of CarePlan of CareWhat Is “Normal” After Cancer Treatment?

Those who have gone through cancer treatment describe the first few months as a time of change. It’s not so much “getting back to normal”; it’s finding out what’s normal for you now. People often say that life has new meaning or that they look at things differently now. You can also expect things to keep changing as you begin your recovery.

Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support. This care plan includes resources and education to assist you on your road to recovery.

Plan of CareThe information presented here is derived from the “Quality-of-Life Assessment,” a patient-

completed self-assessment of side effects following treatment. Persistent Effects Following Completion of Treatment 1. 2. 3.

Other Needs Identified Following Completion of Treatment 1. 2. 3.

Get the Word Out on Cancer Get the Word Out on Cancer Survivorship to Colleagues…Survivorship to Colleagues…

• Multidisciplinary Educational Events on Survivorship– John Muir Health Nursing Education on Survivorship Care– John Muir Health Social Services Survivorship Education – California East Bay Oncology Nursing Society Education

Day; Survivorship Care Presentation for San Francisco East Bay Nurses

– Cancer Rehabilitation Dinner Lecture, September 2010: Speaker, Julie Silver, MD, Assistant Professor, Harvard Medical School, Physiatrist/Cancer Rehabilitation Specialist

– Network Cancer Committee Reports– Task Force Formation and Meetings– Chart Rounds

……and in the Community…and in the Community…• Breast Cancer Survivorship Event: JMH Women’s Health Center:

October 2009• Colorectal Cancer Survivors Quality of Life Presentation: April 2010• “Survivorship 101” Workshop

– Offered bimonthly at The Cancer Support Community since 2008– Average attendance 15 to 20 participants per workshop

• Relay for Life– Survivorship Speaker: August 2010– “Fight Back!” Speaker: August 2011

• “Living Well Beyond Cancer” Conference: September 2010– Speakers, interactive sessions, and demonstrations focused on

recovery after cancer treatment• “Living Well Beyond Cancer II” Conference projected for September

2012, funded by Safeway Foundation Grant

I have a dream….I have a dream….

• All patients are screened for distress during and at the end of treatment

• All patients receive a survivorship care plan that will enable them to achieve the highest possible quality of life after treatment

• All patients feel supported at the end of treatment and that this can be a time of rejoicing

• All patients have the tools and resources to put their cancer experience in a perspective that allows them to reclaim their lives and live well beyond cancer

Thank YouThank You

Shell Portner, RN, BSN, BASurvivorship Nurse Navigator

John Muir Cancer Institute925-947-4462

shell.portner@johnmuirhealth.com