CancerCare © 2016 Patient Access and Engagement Report ... · Program for Interpersonal...

Highlights Slides Table of Contents

Background and Objectives 3 Survey 1: Diagnosis 5 Survey 2: Treatment Planning 15 Survey 3: Communications 26 Survey 4: Finances and Insurance 39 Survey 5: Symptoms and Side effects 53 Survey 6: Survivorship 65

CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. 2

Background and Objectives

Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All CancerCare services are provided by masters prepared oncology social workers and world-leading cancer experts.

The 2016 CancerCare Patient Access and Engagement Report is intended to visibly and effectively represent the voice of cancer patients, advocate for their access to the best and most advanced care, and define and promote patient engagement to enhance their quality of life and optimize their outcomes. Through fielding 6 surveys and collecting the responses of more than 3000 people who have been diagnosed with cancer, this report:

• Defines engagement specifically as it relates to cancer patients

• Identifies barriers to cancer patient engagement with care providers

• Characterizes the financial, emotional, social and quality of life costs of cancer to patients and families

• Recommends strategies and programs to promote cancer patient access and engagement


Advisory Board Members

Walter Baile, MD Professor, Department of Behavioral Science, Division of OVP, Cancer Prevention and Population Sciences; Director, Program for Interpersonal Communication And Relationship Enhancement (I*CARE), University of Texas MD Anderson Cancer Center; Houston, TX Ethan Basch, MD, MSc Director, Cancer Outcomes Research Program; Associate Professor, Medicine and Public Health, UNC Lineberger Comprehensive Cancer Center; Chapel Hill, NC Jimmie Holland, MD Wayne E. Chapman Chair in Psychiatric Oncology Memorial Sloan Kettering Cancer Center; New York, NY Marcia Kean, MBA Chairman, Strategic Initiatives Feinstein Kean Healthcare; Cambridge, MA Sandra Kurtin, RN, MSN, AOCN, ANP-C Adjunct Associate Professor The University of Arizona Cancer Center; Tucson, AZ

Terry Langbaum, MHS Chief Administrative Officer Johns Hopkins Kimmel Cancer Center; Baltimore, MD Michael Parisi, MBA President, CancerCare Board of Trustees Managing Partner, Ogilvy CommonHealth Worldwide; New York, NY Lee Schwartzberg, MD, FACP Chief, Division of Hematology Oncology; The University of Tennessee Health Science Center, Medical Director, The West Clinic; Memphis, TN Thomas Workman, PhD Principal Communication Researcher and Evaluator American Institutes for Research; Washington, DC Michael K. Wong, MD, PhD, FRCPC Berle and Lucy Adams Chair in Cancer Research; Professor of Clinical Medicine; Section Chief, Solid Tumor USC Norris Comprehensive Cancer

Survey 1: Diagnosis


Survey 1: Diagnosis

3% 6%

15%

25% 28%

24%

9% 11% 13%

29% 30%

9%

0%

10%

20%

30%

40%

25-34 35-44 45-54 55-64 65-74 75 andOlder

% o

f pop

ulat

ion

Age Distribution

US Census Survey 1

12% 5%

16% 2% 0%

64%

1% 16%

3% 8% 2% 0%

68%

2% 0%

20%

40%

60%

80%

100%

AfricanAmerican

Asian Hispanic MultiRacial

PacificIslander

White Other

% o

f pop

ulat

ion

Ethnic Distribution

US Census Survey 1

24%

10% 14%

18%

12% 12% 10% 12% 8%

12%

19% 17% 16%

8%

0%

10%

20%

30%

40%

< $25K $25K-$34.9K

$35K-$49.9K

$50K-$74.9K

$75K-$99.9K

$100K-$149.9K

$150K +

% o

f pop

ulat

ion

Income Distribution

US Census Survey 1

12%

30% 17%

10% 20%

11% 1%

15% 24%

13%

28% 19%

0%

20%

40%

60%

80%

100%

< HighSchool

HighSchool

SomeCollege

Associates Bachelor's Masters /Doctorate

% o

f pop

ulat

ion

Education Distribution

US Census Survey 1n=500

6 CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution.

24%

15%

7% 6% 6% 6% 5% 5% 4% 3%

20%

14% 13%

8%

13%

4% 5% 3%

5% 4% 5%

26%

0%

5%

10%

15%

20%

25%

30%

Breast Prostate Colonor Rectal

Lung Thyroid Endometrial,Cervical,Ovarian

Leukemia Bladder Kidney Lymphoma Other

% o

f res

pond

ents

Distribution of Respondents by Cancer Type – Survey 1

CancerCare 2015 ACS Incidence

Respondents to this survey were diagnosed with a range of cancer types. By design, participants were selected to achieve a roughly 50/50 split between those presenting with one of the four most common cancer types (breast, prostate, colon or rectal, lung) and all others. Non-melanoma skin cancer was excluded from the sample.

4. What type of cancer were you most recently diagnosed with?

Major Cancer Types (51%) Remaining Cancer Types (49%)

n=500


4%

25%

68%

21%

48%

74%

0% 20% 40% 60% 80% 100%

I did not follow some of my doctor’s recommendations because of the costs.

I talked about the costs with my doctor or a member ofhis/her staff before I had the tests.

I understood what it would cost me.

% Agreeing or Agreeing Strongly

25 to 54 Years Old (n=162) 55 and Older (n=338)

*Indicates statistically greater at 90% confidence level 7. Thinking about all that occurred when you were getting tests to find out whether you had cancer, please indicate if you agree or disagree with EACH of the following statements.

Most patients understood the risks and purpose of diagnostic testing. Once cancer was suspected, most patients followed their doctors’ recommendations for further testing. Nearly one-half of those aged 25 to 54 years discussed test costs with their doctor, as compared to 25% of older patients. More than one-fifth of the 25- to 54-year-old respondents did not follow some of their doctors’ recommendations because of cost.

Testing Costs

*

*


31%

64%

81%

9%

26%

62%

0% 20% 40% 60% 80% 100%

I did not follow some of my doctor’s recommendations because of the costs.

I talked about the costs with my doctor or a member ofhis/her staff before I had the tests.

I understood what it would cost me.


White (n=65) African American / Hispanic (n=75)


African American/Hispanic patients aged 25 to 54 were significantly more aware of and concerned about costs of diagnostic tests than their white counterparts. Nearly one-third of African American/Hispanic patients did not follow some of their doctors’ recommendations because of cost.

Testing Costs - Ages 25 to 54

*

*

*


80%

89%

94%

95%

71%

87%

89%

89%

0% 20% 40% 60% 80% 100%

Only a few days wait to get thetests.

Could do them at convenientlocations.

Testing and interpretation ofresults done in reasonable

amount of time.

It was easy to schedule them.


25 to 54 Year Olds (n=162) 55 and Older (n=338)

Nearly all respondents said they had convenient and timely access to diagnostic testing and confidence in their diagnosing clinicians. Notwithstanding the high level of confidence they had in the medical professionals who diagnosed them, more than one-fourth of the 25- to 54-year-old respondents did not agree with and did not follow testing recommendations.

Opinions About Testing

7%

97%

26%

91%

0% 20% 40% 60% 80% 100%

Disagreed with some of doctor’s recommendation & didn't follow

them

I was confident in the expertise ofthe medical professionals

diagnosing me


Confidence in Medical Professional

25 to 54 Year Olds (n=162) 55 and Older (n=338)

Convenience


*

*

*

*

*


34%

22%

27%

22%

35%

82%

16%

11%

9%

23%

18%

12%

0% 20% 40% 60% 80% 100%

PA or NP

Social Worker

Religious Leader

Office Staff

Nurse

Physician

Face-to-Face Telephone or Email

17%

9%

11%

20%

81%

9%

8%

12%

0% 20% 40% 60% 80% 100%

PA or NP

Social Worker

Religious Leader

Office Staff

Nurse

Physician

*Indicates statistically greater at 90% confidence level 10. Please indicate if you had a face-to-face or a telephone conversation or an email exchange with any of the following within a few

business days after you were first told you that you definitely had cancer

% of 25 to 54 Year Olds (n=162)

Nearly all respondents had conversations with doctors after learning they had cancer. Respondents aged 25 to 54 years engaged in conversations with PAs, NPs, physician office staff, religious leaders, and social workers at a much higher rate than did patients 55 years and older.

% of 55 and Older (n=338)

Conversations Patients Had Shortly After Cancer Diagnosis

94%

53%

46%

35%

33%

50%

93%

28%

20%

11%

7%

21%

*

*

*

*

*

*

*

*

11

* *


11%

20%

23%

18%

35%

77%

8%

5%

12%

23%

17%

14%

0% 20% 40% 60% 80% 100%

Social Worker

Religious Leader

PA or NP

Office Staff

Nurse

Physician

Face-to-Face Telephone or Email

32%

33%

41%

25%

36%

89%

15%

12%

21%

23%

19%

9%

0% 20% 40% 60% 80% 100%

Social Worker

Religious Leader

PA or NP

Office Staff

Nurse

Physician

*Indicates statistically greater at 90% confidence level 10. Please indicate if you had a face-to-face or a telephone conversation or an email exchange with any of the following within a few

business days after you were first told you that you definitely had cancer

% of White (n=65)

African American / Hispanic respondents aged 25 to 54 years engaged in more conversations following their diagnosis than did their white counterparts. They were significantly more likely to speak with PAs, NPs, social workers, and religious leaders than white patients in this age bracket.

% of African American / Hispanic (n=75)

Conversations Patients Had Shortly After Cancer Diagnosis – 25 to 54 years old

91%

52%

42%

35%

25%

18%

99%

55%

48%

63%

45%

47%

*

*

*

*

*

*

*

*


NOTE: 162 survey respondents were 25 to 54 Years Old and 338 survey respondents were 55 and Older; only those reporting a conversation with each care team member are included in table above

*Indicates statistically greater at 90% confidence level 13. You indicated you had a conversation with (pipe in Q10 selections). How well did you understand that conversation?

78% 77% 74% 72%

89% 84%

90% 86%

0%

20%

40%

60%

80%

100%

Physician Nurse PA or NP Physician Staff

% o

f res

pond

ents

say

ing

un

ders

tood

a lo

t / e

xtre

mel

y w

ell

Level of Understanding of Conversation

25 to 54 Years Old 55 and Older

* * *

n = 152 315 86 93 81 71 74 69

Most respondents reported understanding the conversations they had with clinicians regarding their diagnosis. Older respondents were significantly more likely to say they understood conversations “a lot” or “extremely well” than those respondents aged 25 to 54 years.


58% 54% 47% 40% 30%

35% 34% 32%

32% 32%

0%

20%

40%

60%

80%

100%

Understanding thekind of cancer I had

Understanding thestage of cancer I had

Insurance coveragefor the diagnosis

process

Finding emotional andpractical support

Patient supportorganizations

% o

f re

spon

dent

s

All of the Information Some of the Information

17. Please think back to when you first learned you definitely had cancer. How much of the information you needed on the following topics did you have?

n=500

% of Respondents Receiving All or Some of the Information They Needed

Just over one-half of all survey respondents, regardless of ethnicity or other factors, claimed to have had all of the information they needed about their cancer when they were first diagnosed. Even fewer had sufficient information on insurance coverage for the diagnosis process, finding emotional and practical support, and patient support organizations.


93% 88% 79% 72% 62%

Survey 2: Treatment Planning


Survey 2: Treatment Planning

*

3% 6%

15%

25% 28%

24%

9% 8%

15%

30% 33%

6%

0%

10%

20%

30%

40%

25-34 35-44 45-54 55-64 65-74 75 andOlder

% o

f pop

ulat

ion

Age Distribution

US Census Survey 2

12% 5%

16% 2% 0%

64%

1% 13%

2% 10% 2% 1%

72%

1% 0%

20%

40%

60%

80%

100%

AfricanAmerican


PacificIslander

White Other

% o

f pop

ulat

ion

Ethnic Distribution

US Census Survey 2

24%

10% 14%

18%

12% 12% 10%

17%

11% 12%

19% 16% 15%

5%

0%

10%

20%

30%

40%

< $25K $25K-$34.9K

$35K-$49.9K

$50K-$74.9K

$75K-$99.9K

$100K-$149.9K

$150K +

% o

f pop

ulat

ion

Income Distribution

US Census Survey 2

12% 30%

17% 10%

20% 11%

1% 12%

25% 13%

31%

18%

0%

20%

40%

60%

80%

100%

< HighSchool

HighSchool

SomeCollege


% o

f pop

ulat

ion


US Census Survey 2n=504


17% 16%

6%

8% 9%

2%

8%

6% 5%

6%

2%

15% 14% 13% 13%

8%

5% 4% 4%

5% 5%

8%

3%

18%

0%

2%

4%

6%

8%

10%

12%

14%

16%

18%

20%

Breast Prostate Lung Colon orrectal

Endometrial,Cervical,Ovarian

Kidney Thyroid Bladder Melanoma Lymphoma,Leukemia

Stomach,Brain

Other

% o

f res

pond

ents



Respondents to this survey were diagnosed with a range of cancer types. By design, participants were selected to achieve a roughly 50/50 split between those presenting with one of the four most common cancer types (breast, prostate, lung, and colorectal) vs all others. Non-melanoma skin cancer was excluded from the sample.


Major Cancer Types (47%) Remaining Cancer Types (53%)

n=504


Indicates significantly greater at 90% Confidence Level 14. From the list below, please select the aspects of your cancer treatment where you feel you have enough information?

Treatment Facility Academic Medical Center

Community Hospital/Cancer

Center/MD Number of Respondents 148 325

The benefits of the treatment plan 72% 66% The possible side effects of the treatments 69% 63% The goals of the plan (cure, control, keeping you comfortable) 71% 60% The symptoms you may experience 66% 60% The reasons your team recommended this treatment plan 67% 60% The impact on your activities of daily living 70% 52% The risks of the treatment plan 64% 54% The medicines you need to take 62% 55% Whether or not you'll be able to work 45% 43% The care you will need at home 45% 42% The emotional impact of cancer and its treatment 53% 38% The cost to you of the treatment plan 37% 36% Other treatment options your care team considered 36% 30% The responsibilities of your caregiver(s) 20% 16% Clinical trial opportunities 18% 12%

% of Patients With Enough Information About Aspects of Cancer Treatment

Respondents reported not having enough information on many aspects of their treatment. Only two-thirds said they had enough information on the “benefits of the treatment plan.” Notably, anywhere from 28% to 72% of respondents said they did not have enough information on the other 14 topics tested. Fewer than half felt adequately informed on whether or not they would be able to work, costs of treatment, and clinical trial opportunities. Those treated in academic centers were more likely to report having enough information than those treated elsewhere.


45%

57%

37%

53%

0%

20%

40%

60%

80%

100%

Got second opinion about treatment plan Received written copy of treatment plan

% o

f res

pond

ents

Finalizing the Treatment Plan

Ages 25-54 (n=163) Ages 55 and older (n=341)

Fewer than one-half of respondents got a second opinion about their treatment plan; those aged 25 to 54 were more likely to do so than those 55 and older. Just over one-half of respondents, regardless of age, were given a copy of their treatment plan. Of those in active treatment when they responded to this survey, 66% were given a written or online copy of this plan.

* Indicates directionally greater at 90% confidence level 20. Did you get a second opinion from another doctor about your cancer treatment plan? 21. Has your care team given you a written (paper or online) copy of your cancer treatment plan?

*


80%

14% 6%

0%

20%

40%

60%

80%

100%

Very or Moderately

Somewhat Not At Allor Rarely

Helpfulness of Patient Navigator

Yes 23%

No 64%

Don't Know 13%

Patient Navigator Provided

n=504

33. Has your doctor/treatment center provided you with a “Patient Navigator” or “Nurse Navigator” to help you through your treatment? 34. How helpful has the “Patient Navigator” or “Nurse Navigator” been to you?

% o

f res

pond

ents

(% of respondents)

Only one-quarter of respondents reported having access to a Patient or Nurse Navigator. Of those however, the vast majority said the navigator was helpful. Among patients with the four most common cancers, 29% were provided with a navigator, compared with 18% of those with less common cancers.

n=118


Most respondents indicated their spouses were their primary caregivers and that family members accompanied them to doctor visits. One-quarter to one-third of respondents reported not having a caregiver. Those 55 and older were more likely to not have a caregiver and to visit the doctor alone.

48%

20%

4% 6%

22%

49%

4% 5% 4%

37%

0%

20%

40%

60%

80%

100%

Spouse /Sig. Other

Other FamilyMember

Child Friend/ Other

Don't Havea Caregiver

% o

f res

pond

ents

Patients' Primary Caregiver

Ages 25 to 54 (n=163)Ages 55 and Older (n=341)

61%

17% 10%

3%

23%

47%

6% 2% 2%

47%

0%

20%

40%

60%

80%

100%

FamilyMember

Friend Caregiver Other I go alone

% o

f res

pond

ents

Who Accompanies Patient to Doctor Visits

Ages 25 to 54 (n=163)

Ages 55 and Older (n=341)

*

*

* Indicates statistically greater at 90% confidence level 12. Who usually accompanies / accompanied you to a treatment session or visit with your doctor? 35. Who is your main caregiver?

*

* *


Take prescription medication exactly as directed

Fill all prescriptions my doctor gives me

Take OTC medications exactly as my doctor says

Follow my care team's sleep recommendations

Follow my care team's diet recommendations

Follow my care team's exercise recommendations

*Indicates statistically greater at 90% confidence level 32. How often do you do each of the following?

The vast majority of patients said they filled and took prescription medication as prescribed, though 8% to 14% reported they complied never, rarely, or sometimes. Compliance with taking OTC medications was lower, as was adherence to recommendations regarding diet, sleep, and exercise, which ranged from 55% to 60%, with 9% to 18% never or rarely complying. (Note: see survey 4, where respondents reported lower levels of compliance regarding prescription medications.)

89% 92% 87% 92% 74% 79%

57% 61% 53% 58% 53% 52%

9% 11% 15% 9%

34% 22% 36% 26% 38% 30%

11% 12% 9% 17% 10% 15% 9% 18%

0%

20%

40%

60%

80%

100%

25-54YearsOld

(n=163)

55 andOlder

(n=341)

25-54YearsOld

(n=163)

55 andOlder

(n=341)

25-54YearsOld

(n=163)

55 andOlder

(n=341)

25-54YearsOld

(n=163)

55 andOlder

(n=341)

25-54YearsOld

(n=163)

55 andOlder

(n=341)

25 to54

YearsOld

(n=163)

55 andOlder

(n=341)

% o

f res

pond

ents

Treatment Adherence

Never or Rarely Sometimes Often or Always

*

*

*

* *

* * * *


23%

7% 5% 14%

50%

18% 8% 8%

16%

51%

18%

6% 2%

16%

58%

26%

7% 6% 14%

47%

0%

20%

40%

60%

80%

100%

Never Once Twice More than twice At each visit

% o

f res

pond

ents

Frequency Care Team Asks About Level of Distress

Total (n=504) In Active Treatment (n=89)

Completed Treatment, On Maintenance Therapy (n=110) Completed Treatment, Not On Maintenance Therapy (n=284)

Physician inquiries about distress did not differ by a patient’s treatment status. Roughly 70% to 75% of respondents reported their care team asked about their level of distress. If asked, most patients said the inquiry was repeated each time they visited the physician. (Note that in survey 3, fewer than one-half of patients reported being asked by their care team if they were distressed specifically regarding certain key issues.)

* indicates directionally greater at 90% confidence level 31. How frequently has your care team asked you about your level of distress (e.g, anxiety, extreme upset, or emotional pain)?

*

*


For most aspects of care, 60% to 80% of respondents reported being very or somewhat satisfied with the amount of attention paid by their care team. Overall, men were more satisfied than women. Patient satisfaction levels were quite low regarding team attention to clinical trial opportunities and to a lesser extent offering new treatment options.

*Indicates statistically greater at 90% confidence level; ^ indicates directionally greater. Q. 30 Please rate how satisfied you are with the attention your team pays to the following aspects of your cancer care.

72%

68%

79%

81%

73%

68%

84%

78%

73%

76%

78%

80%

81%

82%

83%

85%

0% 20% 40% 60% 80% 100%

The symptoms you experience

The impact on your activities of daily living

Providing materials to help youunderstand your cancer and treatment

Your questions about your care plan

Your emotional well-being

How you feel physically, day to day

Providing the most up-to-date treatment

Your convenience in receiving thetreatment

Male (n=216) Female (n=288)

Very or Somewhat Satisfied with Attention Care Team Pays to Aspects of Care

24%

47%

51%

48%

57%

60%

54%

67%

65%

23%

43%

48%

50%

62%

63%

65%

69%

71%

0% 20% 40% 60% 80% 100%

Clinical trial opportunities

Offering new treatment options

Whether or not you can work

Explaining the responsibilities of yourcaregiver(s)

Managing the financial costs of treatment

The care you need at home

The cost to you of the treatment plan

The side effects of the treatments

The emotional well-being of your family


*

*

*

*

*


Overall % Agreeing

25 - 54 Years Old (n=163)

55 and Older

(n=341)

Academic Medical Center

(n=148)

Community Cancer

Center/Hospital/MD

(n=325) I trust my doctor's decisions/advice regarding treatment of my cancer. 90% 89% 90% 93% 89%

I know what each of my medications is for. 84% 83% 84% 89% 81% I am getting the best cancer care for me. 83% 81% 84% 94% 80% I am getting the most advanced cancer care available. 74% 76% 73% 86% 70%

I always take my cancer medications on schedule. 59% 69% 54% 57% 58%

My care team knows my end-of-life wishes. 44% 42% 45% 46% 44% I am considering or have considered alternative treatments for my cancer. 21% 37% 14% 24% 20%

I suggest new treatment options or ways to treat my cancer to my doctor. 23% 33% 18% 23% 22%

I switched to a new doctor or treatment center. 16% 25% 11% 18% 15%

I take medicines that I don't tell my care team about. 9% 17% 5% 9% 10%

Opinions about Their Cancer Treatment

*Indicates statistically greater at 90% confidence level 37. Thinking about all that has happened since you began treatment for your cancer, please indicate if you agree or disagree with EACH of the following statements:

*

*

*

*

Overall, most respondents said they trusted their doctors, knew the medications they took, and believed they were getting the best possible care. Among those treated in the community, 30% did not agree they were getting the most advanced cancer care available, compared to only 14% of those treated in academic centers. Fewer than one-half said their care team knew their end-of-life wishes. Younger respondents were significantly more likely than those 55 and older to have suggested new treatment options, considered alternative treatments, switched providers, and taken medicines they did not disclose to their care team.


Age Treatment Facility

*

*

*

*

25

Survey 3: Communication


Survey 3: Communication

*

*

3% 6%

15%

25% 28%

24%

13% 12% 13%

24%

33%

6%

0%

10%

20%

30%

40%

25-34 35-44 45-54 55-64 65-74 75 andOlder

% o

f pop

ulat

ion

Age Distribution

US Census Survey 3

12% 5%

16% 2% 0%

64%

1% 16%

2% 9%

2% 0%

72%

0% 0%

20%

40%

60%

80%

100%

AfricanAmerican


PacificIslander

White Other

% o

f pop

ulat

ion

Ethnic Distribution

US Census Survey 3

24%

10% 14%

18%

12% 12% 10% 11% 8%

12%

22% 20%

15%

9%

0%

10%

20%

30%

40%

< $25K $25K-$34.9K

$35K-$49.9K

$50K-$74.9K

$75K-$99.9K

$100K-$149.9K

$150K +

% o

f pop

ulat

ion

Income Distribution

US Census Survey 3

12%

30% 17%

10% 20%

11% 2%

13% 21%

12%

33%

18%

0%

20%

40%

60%

80%

100%

< HighSchool

HighSchool

SomeCollege


% o

f pop

ulat

ion


US Census Survey 3N=501


24%

15%

6% 6% 8% 7%

6% 4%

10%

6%

10%

14% 13% 13%

8%

5% 4% 4%

5%

11% 9%

14%

0%

5%

10%

15%

20%

25%

Breast Prostate Lung Colon or rectal Endometrial,Cervical,Ovarian

Kidney Thyroid Bladder Lymphoma,Leukemia,Melanoma,Head/Neck

Pancreatic,Stomach,

Brain, Liver,Myeloma

Other

% o

f res

pond

ents



Respondents to this survey were diagnosed with a range of cancer types. By design, participants were selected to achieve a roughly 50/50 split between those presenting with one of the four most common cancer types (breast, prostate, lung, and colorectal) and all others. Non-melanoma skin cancer was excluded from the sample.



Major Cancer Types (51%)

Remaining Cancer Types (49%)

n=501

2% to 3%

each

< 2% each

28

94%

4% 2% 0%

20%

40%

60%

80%

100%

% o

f res

pond

ents

Satisfaction with Coordination by Care Team

Very/Somewhat Satisfied

Neither Satisfied norDissatisfiedVery/Somewhat Dissatisfied

13. Overall, how satisfied are you with how well your care is coordinated by the members of your clinical care team 15. Overall, how often do you feel you understand what your healthcare providers are discussing with you? 20. When you contact the members of your cancer care team, how often are you able to connect with them in a reasonable amount of time?

Regardless of sex, ethnicity or where they were treated, respondents indicated they were satisfied with their care coordination, understood what their health-care providers were discussing with them most or all of the time, and were able to connect with their health-care team in a reasonable amount of time.

94%

6% 0% 0%

20%

40%

60%

80%

100%

% o

f res

pond

ents

Understand What Health-Care Providers are Discussing

All / Most of the Time

Sometimes

Not Often / Never

89% 81% 86%

8% 14% 10% 5%

0%

20%

40%

60%

80%

100%

% o

f res

pond

ents

Able to Connect with Care Team in Reasonable Time

Always/Often

Sometimes

Rarely/Never

N=501

29

PCP Oncologist Nurse


Indicates statistically greater at 90% confidence level

Often or Always Agree Never or Rarely Agree

25-54 Years Old

(n=189)

55 and Older

(n=312)

25-54 Years Old

(n=189)

55 and Older

(n=312)

My doctor listens to my concerns. 84% 92% 4% 2%

My doctor speaks to me using language I can understand. 82% 94% 8% 2%

I am confident that I can tell my doctor my concerns even when he or she does not ask. 82% 92% 8% 3%

My doctor is easy to talk to. 80% 91% 5% 3%

My doctor is kind and compassionate. 77% 90% 6% 2%

My doctor shares with me (or provides me access to) the information in my medical records. 77% 80% 9% 8%

My doctor asks for my input and opinion. 70% 71% 8% 10%

My doctor is open to suggestions about alternative or complementary therapies. 57% 48% 13% 9%

Patients’ Perceptions of their Doctors

31. Please indicate how often you believe the following statements to be true?

Overall, respondents voiced relatively positive opinions of the conversations and relationships they had with their doctors. Those 55 years and older were significantly more positive than 25 to 54 year old patients. However, 57% of the younger group found their doctors were open to suggestions regarding alternative or complementary therapies, compared to 48% of those 55 years and older.


Indicates statistically greater at 90% confidence level


White (n=82)

African American /

Hispanic (n=96)

White (n=82)

African American/ Hispanic (n=96)

My doctor speaks to me using language I can understand. 87% 76% 2% 13%

I am confident that I can tell my doctor my concerns even when he or she does not ask. 87% 74% 2% 14%

My doctor is easy to talk to. 82% 77% 4% 5%

My doctor is kind and compassionate. 82% 72% 4% 8%

My doctor shares with me (or provides me access to) the information in my medical records. 80% 72% 6% 12%

My doctor listens to my concerns. 57% 82% 13% 4%

My doctor is open to suggestions about alternative or complementary therapies. 52% 60% 9% 17%

My doctor asks for my input and opinion. 37% 73% 30% 9%

Patients’ Perceptions of their Doctors – Ages 25 to 54

31. Please indicate how often you believe the following statements to be true?

Among respondents aged 25 to 54 years, whites were significantly more likely than African Americans / Hispanics to report that their doctors spoke in understandable language and that they had confidence in being able to tell their doctor their concerns. On the other hand, African American / Hispanic respondents were significantly more likely to report that their doctors listened to their concerns and asked for their input and opinions.


Indicates statistically greater at 90% confidence level 32. The following are complaints that some patients have about medical care. Please indicate how often you have or had these complaints during your cancer treatment.

African American / Hispanic respondents were more likely than whites to have complaints about communications with their care teams. Roughly 20% of African Americans / Hispanics had a complaint regarding a lack of cultural competence or respect, compared to less than 10% of whites.


White (n=360)

African American /Hispanic (n=121)

White (n=360)

African American /Hispanic (n=121)

I am uncomfortable talking with my care team about how my cultural, religious, and personal values affect my treatment

7% 20% 58% 64%

I can’t speak with my care team members in my preferred language 6% 17% 51% 60%

My doctor shows a lack of respect for my cultural, religious, and personal values 5% 17% 72% 65%

I feel that 'I’m not being heard' 4% 16% 84% 69%

It’s hard to understand what the doctor is saying about my treatment 4% 19% 82% 66%

The services to translate communication into my preferred language aren’t good 3% 22% 39% 49%

Patient Complaints About Medical Care


67% 67%

46% 46% 40% 37%

25%

11%

77%

61% 64%

43% 35%

52%

25% 15%

Oncologist PCP Radiologist Nurse PA or NP Family orCaregivers

Pharmacist Social Worker orPsychologist

0%

20%

40%

60%

80%

100%

% o

f res

pond

ents

Care Team Members

Active Treatment (n=111) Completed Treatment, On Maintenance (n=167)

* Indicates statistically greater at 90% confidence level 9. Which of the following do you consider to be members of your cancer care team? 11. You indicated that a family member or caregiver is a member of your cancer care team. Is he or she authorized to communicate with the clinical care team on your behalf?

A majority of respondents considered oncologists, primary care physicians, radiologists, and family or caregivers to be on their cancer care teams. Nurses were considered team members by nearly one-half of respondents. Oncologists, radiologists, and family or caregivers were more likely to part of the team after active treatment ended.

*

*

*


75%

11% 14%

68%

17% 16%

0%

20%

40%

60%

80%

100%

Yes No Don't Know

Patient Portal Provided by Physician

In Active Treatment (n=111)

Completed Treatment / On Maintenance (n=167)

54%

33%

27%

38%

19% 29%

0%

20%

40%

60%

80%

100%

In Active Treatment(n=83)

Completed Treatment / OnMaintenance (n=113)

Use of Patient Portal

Always or Often Sometimes Never or Rarely

The majority of respondents in active treatment or on maintenance therapy reported having access to and using patient portals. More than one-half of those in active treatment reported they often or always used it and only one-fifth reported rarely or never using it. 40% of those aged 25 to 54 years used the portal “always or often” compared to 28% of those 55 years and older.


* Indicates statistically greater at 90% confidence level 21. Does the physician treating you for cancer offer a patient portal (a secure online website that provides 24-hour access to personal health information)? 22. How often do you use it?

% o

f res

pond

ents

% o

f res

pond

ents

*

34

*

43% 40% 40% 39% 37%

23% 20% 18% 16% 15%

54% 52% 47% 46%

21% 26% 29%

23% 18%

38%

0%

20%

40%

60%

80%

100%

Side Effects Worry/AnxietyAbout Future

Lifestyle Concerns Daily LivingActivities

Sexual/IntimacyConcerns

FamilyConcerns

FinancialChallenges

Work-RelatedConcerns

End of LifeConcerns

Hair Loss/Body Image

% o

f res

pond

ents

Distress Concerns Raised by Care Team Members


*Indicates statistically greater at 90% confidence level 26. Has a member of your cancer care team ever asked if you were feeling distressed (e.g. anxious, extremely upset, or in

emotional pain) related to any of the following issues? Please select all the issues about which you have been asked.

* *

* * *

Fewer than half of patients who responded to the survey were asked by their care team if they felt distressed regarding various important aspects of their lives. Women more often mentioned being asked about side effects, worry about the future, financial concerns, and hair loss/body image, while men were more often asked about sexual and intimacy concerns.


36%

27%

14% 12% 11% 10%

13% 15%

9% 4%

6% 3%

0%

20%

40%

60%

PCP Oncologist Family Member/Caregiver

PA or NP Nurse Social Workeror Psychologist

% o

f res

pond

ents

Care Team Members Making Support Referrals - Emotional


*Indicates statistically greater at 90% confidence level 27. Which of the following members of your cancer care team have referred you to a patient support service or professional to help

you cope with emotional distress?

n=501

*

*

* *

Despite the prevalence of emotional and financial distress among people with cancer, respondents to the survey indicated that care team members did not often refer them to services or professionals for support. Among those aged 25 to 54 years, 36% said they received a referral for emotional distress from their primary care physician and 27% from their oncologist. Respondents aged 55 years and older were rarely referred.

* *

Per survey 6, incidence of distress for 25-54 year olds is 62%-74%; for 55 and older, it’s 26% to 48%


22% 19%

13% 11%

9% 7% 5% 5%

9%

2% 2% 4%

0%

20%

40%

PCP Oncologist Family Member/Caregiver

PA or NP Social Worker orPsychologist

Nurse

% o

f res

pond

ents

Care Team Members Making Support Referrals - Financial


*Indicates statistically greater at 90% confidence level 28. Which of the following members of your cancer care team have referred you to a patient support service or professional to help

you cope with financial distress?

n=501

*

*

* *

Referrals for financial support were even lower than those for emotional support. Similarly, however, primary care physicians were more likely to refer than other care team members, and referrals were rarely made for respondents 55 years and older.


*

Per survey 6, incidence of distress regarding finances for 25-54 year olds is 69%; for 55 and older, it’s 33%.

37

6%

8%

9%

13%

16%

17%

17%

9%

12%

12%

15%

34%

28%

20%

27%

9%

37%

8%

10%

17%

17%

22%

20%

14%

17%

15%

8%

19%

Financial challenges

Insurance matters

Family-related concerns

Costs of treatments

Sexual/intimacy issues

Emotional distress

Work-related concerns

0% 20% 40% 60% 80% 100%

Oncologist PCP Family members or caregivers Would Not discuss with Team Member

19. Please indicate the member of your cancer care treatment team who would be your first choice for discussing each of the following topics.

The patients surveyed generally chose to discuss treatment-related issues with their oncologists. There were some issues, however, that they preferred to discuss with their primary care physicians, including diet and exercise, sexual/intimacy and work concerns, emotional distress, and end of life. Family members or caregivers were preferred by some for discussions regarding their families, financial challenges, work-related concerns, and emotional distress. Nurses/PAs/NPs were mentioned by fewer than 10% of respondents as the first choice for discussing any of the topics listed.


Preferred Care Team Member For Discussions

19%

20%

33%

35%

48%

48%

52%

52%

42%

23%

20%

31%

19%

22%

22%

21%

5%

11%

7%

14%

8%

5%

Diet and exercise

Questions about end of life

Hair loss, concerns aboutbody image

Issues with taking yourmedications

Clinical trials

Symptoms and side effects

Treatment options

Treatment goals

0% 20% 40% 60% 80% 100%

n=501

38

Survey 4: Finances and Insurance


Survey 4: Financial & Insurance


A C

* *

40

3% 6%

15%

25% 28%

24%

14% 11%

17%

25% 29%

4%

0%

10%

20%

30%

40%

25-34 35-44 45-54 55-64 65-74 75 andOlder

% o

f pop

ulat

ion

Age Distribution

US Census Survey 4

12% 5%

16% 2% 0%

64%

1%

19%

2% 6% 2% 0%

71%

1% 0%

20%

40%

60%

80%

100%

AfricanAmerican


PacificIslander

White Other

% o

f pop

ulat

ion

Ethnic Distribution

US Census Survey 4

24%

10% 14%

18%

12% 12% 10% 13% 11% 12%

21% 17% 16%

6%

0%

10%

20%

30%

40%

< $25K $25K-$34.9K

$35K-$49.9K

$50K-$74.9K

$75K-$99.9K

$100K-$149.9K

$150K +

% o

f pop

ulat

ion

Income Distribution

US Census Survey 4

12%

30% 17%

10% 20%

11% 1%

17% 22% 11%

30%

18%

0%

20%

40%

60%

80%

100%

< HighSchool

HighSchool

SomeCollege


% o

f pop

ulat

ion


US Census Survey 4

n=509

29%

10% 8%

5% 7%

5% 5% 5% 4% 4%

7%

4%

9%

14% 13%

8%

13%

5% 4% 4% 3% 5% 5%

9% 8% 9%

0%

5%

10%

15%

20%

25%

30%

35%

Breast Prostate Colon orrectal

Lung Endometrial,Cervical,Ovarian

Kidney Thyroid Leukemia Lymphoma Bladder Melanoma,Pancreatic,

Brain

Head/neck,Myeloma,Stomach,

Liver

Other

% o

f res

pond

ents



Respondents to this survey were diagnosed with a range of cancer types. By design, participants were selected to achieve a roughly 50/50 split between those presenting with one of the four most common cancer types (breast, prostate, colorectal, and lung) and all others. Non-melanoma skin cancer was excluded from the sample.





n=509

2% to 3%

each

< 1% each

41

Just over one-half of survey respondents were covered by Medicare or Medicaid. Blue Cross/Blue Shield was the leading private insurer.

6%

0%

4%

9%

11%

36%

54%

Other

No Insurance

Tricare / Champs

Private (Healthcare.gov)

Private Medigap

Private (Employer)

Medicare / Medicaid

0% 20% 40% 60%

Type of Healthcare Insurance (n=509)

7%

3%

4%

8%

11%

17%

22%

39%

Other

Humana

Kaiser

Cigna

Aetna

United Healthcare

Private Employer

Blue Cross / Blue Shield

0% 20% 40% 60%

Insurance Provider (n=181)

Type of Insurance and Provider


11. Overall, how well do you think you understand what your insurance covers for your cancer care? 13. Overall, how satisfied are you with your insurance coverage for your cancer treatment?

55%

75%

52%

69%

0%

20%

40%

60%

80%

100%

Understand insurancecoverage

very well or completely

Moderately or verysatisfied with

insurance coverage

Total (n=509) 25 to 64 Years Old (n=341)

Perceptions of Insurance Coverage

About one-half of total respondents reported understanding their insurance coverage for cancer “completely” or “very well.” Nearly 70% of the 25- to 64-year-old respondents reported being moderately or very satisfied with their insurance coverage.


11. Overall, how well do you think you understand what your insurance covers for your cancer care? 13. Overall, how satisfied are you with your insurance coverage for your cancer treatment?

Perceptions of Insurance Coverage – 25 to 64 Years Old

Among respondents ages 25 to 64 years, on average 52% reported understanding their insurance coverage very well or completely and 69% said they were moderately or very satisfied with their insurance coverage. African American / Hispanic respondents’ answers were directionally lower than their white counterparts.


55% 46%

72% 64%

0%

20%

40%

60%

80%

100%

White(n=212)

African American/Hispanic(n=110)

White(n=212)

African American/Hispanic(n=110)

Understand Insurance Coverage Very Well or Completely

Moderately or Very Satisfied With Insurance Coverage

44

0% 5% 10% 15% 20% 25% 30%

Affordability of deductibles

Access to complementary therapies such as acupuncture or massage

Amount I have to pay for the tests recommended by my doctor

Access to an insurance case manager who explains/assists with…

Affordability of co-payments

My ability to pay for medications recommended by my doctor

Access to Clinical trials

Access to genetic testing

In-network access to psychological counseling/support

Access to newly approved treatments or drugs

Access to advanced imaging technology

Getting timely approvals for tests or procedures

The choice of hospitals and/or treatment centers

The choice of doctors

Dissatisfaction With Aspects of Insurance Coverage for Cancer 25 to 64 Years Old (n=341)

Among respondents 25 to 64 years old, approximately 10% - 25% reported being very or somewhat dissatisfied with certain aspects of their insurance coverage. Those areas that garnered the most dissatisfaction were access to new treatments or genetic testing, ability to pay for medications, affordability of co-payments and deductibles, co-pays for tests, access to complementary therapies, and access to an insurance case manager.

Q. 14: How satisfied are you with the following aspects of your insurance coverage for your cancer treatment?


34%

25%

14% 14% 13%

35%

8%

47%

10%

1% 0%

20%

40%

60%

Continued working full time

Stopped working N/A,Not working beforereceiving treatment

Continued workingpart time

Switched from full time topart time work

% o

f res

pond

ents

Employment Status During Treatment


Of those respondents 25 to 64 years old, 25% stopped working during treatment and 13% switched from full-time to part-time employment. One-third of all respondents continued to work full-time.

10. What was your employment status while you were being treated for cancer?

*

*

*

n=509


Respondents aged 55 years and older had a significantly easier time finding a doctor and/or hospital in their insurance plan than those younger than 55 years. About one-third of younger patients reported it was not easy.

65%

90% 67%

87%

29%

6%

24% 8%

7% 8% 5%

0%

20%

40%

60%

80%

100%

25-54 Years Old(n=215)

55 and Older(n=294)

25-54 Years Old(n=215)

55 and Older(n=294)

% o

f res

pond

ents

Ease of Finding Doctor or Treatment Center Taking Your Insurance

Very / Somewhat Easy Neither Easy or Difficult Very / Somewhat Difficult


* Indicates statistically greater at 90% confidence level 17. Overall, how difficult or easy was it to find a doctor to treat you for cancer who takes your insurance? 19. Overall, how difficult or easy was it to find a really good hospital or cancer treatment center that takes your insurance?

Ease of Finding a Doctor Ease of Finding a Good Hospital / Treatment Center

* *

* *

47

Roughly one-fifth to one-third of patients reported it was difficult to determine out-of-pocket costs before incurring the expense. This finding did not vary based on patients’ demographics or the length of time since diagnosis. Out-of-pocket hospital fees were considered the most difficult to determine.

41% 37% 35% 35% 32%

25% 24% 25% 24% 23%

21% 25% 26% 28% 31%

0%

20%

40%

60%

80%

100%

Physician Fees Scans and X-rays Treatments Procedures Hospital fees

% o

f res

pond

ents

Ease of Determining Out-of-Pocket Costs

Somewhat or Very Easy Neither Easy or Difficult Somewhat or Very Difficult


44. How difficult or easy was it for you to determine the out-of-pocket cost of each of the following BEFORE you incurred the expense?

n=509

48

25% 34% 41% 36% 29% 35%

0%

20%

40%

60%

80%

100%

Never or Rarely Sometimes Often or Always

% o

f res

pond

ents

Frequency Health Team Considers Patient’s Financial Status when Planning Treatment

*Indicates statistically greater at 90% confidence level 31. How often do you feel your healthcare team takes your financial situation into consideration when recommending treatment options? 23. Thinking about the time when you were getting cancer treatment, how distressed (e.g. anxious, extremely upset, or in emotional pain) were you from thinking about your finances?

Among respondents under Medicare age, 25% reported that their financial situation was never or rarely considered by their care team in treatment planning and 34% said it was sometimes considered. Yet, 58% reported being distressed about their finances while in treatment.


30% 28% 42%

7% 17%

76%

0%20%40%60%80%

100%

Extremely/Very Distressed Somewhat Distressed Not At All/A Little Distressed

% o

f res

pond

ents

Patient’s Level of Financial Distress During Treatment


*

* *

*

49

* Indicates statistically greater at 90% confidence level 45. Thinking about the time you were getting cancer treatment, on average, how much did you spend out of pocket each month on the following?

Average monthly out-of-pocket costs for patients in treatment, aged 25 to 64, were $1,112 compared to $584 for those 65 or older. About a quarter of the monthly expense was for co-pays and deductibles for drugs, doctor visits, and tests. Another third reflected spending on services and non-prescription medicines to help with symptoms and side effects.

$299

$212 $208 $205 $188 $165

$127 $97 $97 $98

$0

$50

$100

$150

$200

$250

$300

$350

Co-payments anddeductibles for drugs,doctor visits and tests

Transportation to andfrom clinic visits,

baby-sitting,

Services to help withsymptoms and side effects

such as acupuncture ormassage therapy

Special clothing,wigs, etc.

Non-prescriptionmedications

Aver

age

Cost

Average Monthly Out-of-Pocket Costs


*

* * * *


Done Often or Always Done Sometimes

25 to 54 Years Old (n=215)

55 and Older

(n=294)

25 to 54 Years Old (n=215)

55 and Older

(n=294)

Apply for co-pay assistance to cover medication costs 27% 10% 17% 4%

Choose to use a lower cost medication than what the doctor recommended 27% 7% 16% 8%

Delay or skip complementary treatment 27% 7% 16% 5% Apply for financial assistance for non-medical expenses such as transportation 25% 6% 18% 5%

Postpone or skip psychological counseling or support 24% 6% 16% 4%

Apply for financial assistance from my doctor/hospital 24% 4% 21% 7%

Discuss changing my treatment to one that costs less 24% 3% 19% 10%

Postpone or skip follow-up testing 23% 4% 16% 5%

Postpone or not fill prescriptions 21% 2% 17% 6%

Postpone or skip doctor's appointments 20% 2% 19% 7%

Skip dosages of prescribed drugs 20% 2% 14% 5%

Postpone or skip blood work 17% 2% 18% 3%

Order medications on-line from non-US sources 16% 3% 14% 2% Cut pills in half 14% 4% 17% 4%

Many respondents, especially those aged 25 to 54 years, took steps to reduce the costs of treatment, some of which may have compromised their cancer treatment: 39% skipped doctors’ appointments; 38% postponed or did not fill prescriptions; 34% skipped doses of prescribed drugs; 30% ordered medication from non-US sources; and 31% cut pills in half.


Steps Taken to Reduce Treatment Expenses

Indicates statistically different at 90% confidence level 25. How often do you do each of the following in order to REDUCE your expenses related to your cancer treatment?

51

21%

24%

24%

31%

33%

41%

4%

6%

9%

11%

20%

36%

I missed paying bills such asheat, electricity, phone

I applied for financial assistance from my doctor’s

office or hospital

I applied for financialassistance from a patient

support organization

I borrowed money fromfamily/friends

I cut back on groceries,transportation, clothing,

tuition

I cut back on non-essentialexpenses

0% 20% 40% 60%

% of respondents

*Indicates statistically greater at 90% confidence level 33. Which of the following have you experienced as a result of bills related to your cancer treatment? Please select all that apply.

5%

11%

11%

11%

17%

17%

2%

6%

2%

4%

4%

3%

I declared bankruptcy

I borrowed money from abank or credit union

I moved to a lessexpensive home

I considered declaringbankruptcy

I missed rent/mortgagepayments

I asked for financial helpfrom a church or

community organization

0% 5% 10% 15% 20%% of respondents

*

*

*

*

*

Expenses related to a cancer diagnosis had an impact on numerous aspects of patients’ finances. One-third of respondents aged 25 to 54 years cut back on essentials such as groceries and transportation and/or borrowed from family/friends; one-quarter applied for assistance from patient organizations or providers; 21% missed utility bills; and 17% missed rent/mortgage payments.


Experiences Due to Treatment Bills

*


*

*

*

*

*

52

Survey 5: Symptoms and Side Effects


Survey 5: Symptoms and Quality of Life

54

A C

* *

54

3% 6%

15%

25% 28%

24%

13% 15% 16%

24% 25%

7%

0%

10%

20%

30%

40%

25-34 35-44 45-54 55-64 65-74 75 andOlder

% o

f pop

ulat

ion

Age Distribution

US Census Survey 5

12% 5%

16% 2% 0%

64%

1% 17%

2% 7% 1% 1%

71%

1% 0%

20%

40%

60%

80%

100%

AfricanAmerican


PacificIslander

White Other

% o

f pop

ulat

ion

Ethnic Distribution

US Census Survey 5

24%

10% 14%

18%

12% 12% 10% 12%

6%

13%

23%

18% 15%

6%

0%

10%

20%

30%

40%

< $25K $25K-$34.9K

$35K-$49.9K

$50K-$74.9K

$75K-$99.9K

$100K-$149.9K

$150K +

% o

f pop

ulat

ion

Income Distribution

US Census Survey 5

12%

30% 17%

10% 20%

11% 1%

14% 25%

15% 27%

18%

0%

20%

40%

60%

80%

100%

< HighSchool

HighSchool

SomeCollege


% o

f pop

ulat

ion


US Census Survey 5

n=527


25%

12%

5% 7%

13%

7% 6%

3% 3%

8%

4% 2%

7%

14% 13% 13%

8%

5% 5% 4% 3% 4%

11%

8%

3%

9%

0%

5%

10%

15%

20%

25%

30%

Breast Prostate Lung Colonor Rectal

Melanoma Endometrial,Cervical,Ovarian

Thyroid Leukemia Kidney Lymphoma,Brain,

Bladder

Head Neck,Liver,

Pancreatic

Stomach,Myeloma

Other

% o

f res

pond

ents



Respondents to this survey were diagnosed with a range of cancer types. By design, participants were selected to achieve a roughly 50/50 split between those presenting with one of the four most common cancer types (breast, prostate, lung, and colorectal) and all others. Non-melanoma skin cancer was excluded from the sample.





n=527

2% to 3%

each

< 1% each

1% to <2% each

Note: percentages may be off by 1% due to rounding

55

Participation in clinical trials was much higher in this study population than the U.S. cancer patient average of 3%. One-quarter of African American / Hispanic patients reported participating in a trial, as did 30% of those aged 25 to 44 years. (Note that 53% of the 25- to 44-year-old respondents identified as African American/Hispanic.) Those with less common cancers were more likely to be on a trial than those who had breast, prostate, lung, or colon cancers. Also, those patients diagnosed within the past 4 years were more than twice as likely to be part of a clinical trial than those who were diagnosed more than 4 years ago.


*Indicates statistically greater at 90% confidence level 9. Have you ever been part of a clinical trial for cancer treatment?

9% 26%

10% 18% 19%

8%

30% 9% 7%

90% 72%

89% 81% 80%

91%

68% 90% 92%

0%

20%

40%

60%

80%

100%

Whites(n=374)

AfricanAmericans/Hispanics(n=125)

Top 4Cancers(n=250)

All OtherCancers(n=277)

Diagnosed 1to 4 Years

Ago(n=301)

DiagnosedMore Than 4

Years Ago(n=226)

25 to 44Years Old(n=145)


65 andOlder

(n=170)

% o

f res

pond

ents

Clinical Trial Participation

Yes No

* *

* *

*

*

*

*

*

56

19% 12%

43%

80% 85%

57%

93%

0%

20%

40%

60%

80%

100%

Males(n=200)

Females(n=327)


45 or Older(n=382)

% o

f res

pond

ents

Yes No Don't Know

Use of the “distress thermometer” varied greatly across patient populations though was quite low on average. Patients who were under 45 years of age reported being 10 times more likely to be asked to complete the distress thermometer form than were those 45 years or older. Those treated at community cancer centers were significantly more likely to have used the distress thermometer (22%), as were those in active treatment (29%) or on maintenance therapy (19%).


* Indicates statistically greater at 90% confidence level 40. Have you ever been asked to complete the “Distress Thermometer” form, which is pictured below?

Use of “Distress Thermometer Form”

Distress Thermometer Form Age Gender

*

*

*

57

*

Indicates statistically different at 90% confidence level 10. Following is a list of symptoms and side effects. Please indicate those that you have experienced moderately to severely due to your cancer and/or its treatment 11. Of the moderate to severe symptoms/side effects you selected, which ones most interfere with your day-to-day activities?

Moderate-to-severe fatigue was the symptom experienced most often, with 25% of men and 46% of women indicating that it interfered with day-to-day activities. Overall, women were much more likely to report experiencing symptoms and side effects and to report that they interfered with their day-to-day activities. Those in active treatment and those on maintenance therapy experienced these symptoms and their impact at similar levels.


Moderate to Severe Symptoms Symptoms Most Interfering With Day-to-Day Activities

Male (n=200)

Female (n=327)

Male (n=174)

Female (n=298)

Fatigue 41% 61% 25% 46%

Anxiety 30% 43% 12% 20%

Difficulty exercising and staying physically active 29% 37% 10% 16%

Sexual/intimate relations problems 27% 16% 8% 3%

Weight gain or loss 25% 36% 4% 9%

Decreased appetite 23% 28% 8% 7%

Hair loss 22% 40% 5% 7%

Diarrhea 21% 17% 9% 7%

Nausea or vomiting 15% 25% 7% 15%

Common Symptoms and Side Effects

58

Among survey respondents, satisfaction with the way their care team prepared them for cancer-related symptoms and side effects was relatively low, and 13% to 35% reported they were very or somewhat dissatisfied. Younger patients and those on maintenance therapy were most likely to be dissatisfied.

52% 67% 61% 62%

47%

14%

20% 21% 23%

25%

35% 13% 17% 16%

29%

0%

20%

40%

60%

80%

100%

25 to 44 Years Old(n=145)

45 to 54 Years Old(n=84)

55 and Older (n=298) In Active Treatment(n=102)

Completed Treatment- On Maintenance

(n=118)

% o

f res

pond

ents

Very or Somewhat Satisfied Neither Satisfied or Dissatisfied Very or Somewhat Dissatisfied


*

* *

*

*Indicates statistically greater at 90% confidence level 14. How satisfied are you with the way your clinical care team prepared you for the symptoms and side effects you experienced?

Satisfaction With Preparation By Care Team for Symptoms and Side Effects

*

*

59

15%

25%

13%

20%

18%

45%

53%

74%

17%

20%

20%

26%

28%

38%

27%

20%

68%

55%

67%

53%

54%

17%

20%

7%

0% 20% 40% 60% 80% 100%% of respondents

Always or Often Sometimes Never or Rarely

17%

20%

21%

24%

26%

47%

54%

80%

21%

30%

28%

28%

32%

40%

29%

16%

63%

50%

52%

49%

42%

13%

17%

Not Report Symptoms/Side Effects - Don’t Want to Bother Doctor

Use Complementary/Alternative Treatmentsto Manage Symptoms/Side Effects

Change Treatment Because ofSymptoms/Side Effects

Downplay/Make Light of Symptoms/SideEffects When Describing To Doctor

Wonder Whether I’m Receiving the Best Care

Discuss Symptoms/Side Effects with Nurse

Discuss Symptoms/Side Effects with PA or NP

Discuss Symptoms/Side Effects With Doctor

0% 20% 40% 60% 80% 100%% of respondents

*Indicates statistically greater at 90% confidence level 20. How often do/did you take the following actions?

In response to experiencing symptoms and side effects, patients had discussions most often with their doctors and to a lesser extent with PA/NPs or nurses. Those in active treatment or on maintenance therapy responded very similarly to these survey questions. Of note, about one-half of respondents wondered whether they were receiving the best care. One-half also said they downplayed their symptoms and side effects when describing them to their doctor, and nearly 40% said they did not report symptoms or side effects because they did not want to bother the doctor.


Responses to Symptoms and Side Effects

On Active Treatment (n=102) Completed Treatment - On Maintenance (n=118)

*

*

*

60

26% 26%

51%

16%

47%

22%

0%

10%

20%

30%

40%

50%

60%

Male(n=200)

Female(n=327)


45 Yearsor Older(n=382)

ActiveTreatment(n=102)

Non-ActiveTreatment(n=408)

% o

f res

pond

ents

One-quarter of both men and women who responded to the survey reported they had used cancer-specific counseling/support services. Those respondents aged 25 to 44 years old and those in active treatment were twice as likely to have used these services.


*

*Indicates statistically greater at 90% confidence level 36. Have you ever used cancer-specific counseling/support services (such as social workers, psychologists or psychiatrists who specialize in oncology) to help you cope with your symptoms/side effects?

Use of Cancer Specific Counseling/Support Services

Gender Age Treatment Status

*

61

As a result of having cancer, for one-quarter to one-third of respondents, the ability to perform day-to-day activities was dramatically compromised. For many, this was true even when treatment had been completed, regardless of whether or not they were on maintenance therapy.

46%

37%

31% 36%

34% 33%

28% 26% 28%

22%

13%

37% 34%

30% 26% 25% 24%

19% 24%

19% 14% 13%

19% 17% 12%

9% 12% 13%

7% 4%

7% 6% 3%

0%

10%

20%

30%

40%

50%Activities Reduced Completely or A Lot

In Active Treatment (n=102)Completed Treatment, On Maintenance Therapy (n=118)Completed Treatment, Not On Maintenance Therapy (n=257)


*Indicates statistically greater at 90% confidence level 43. How much has your ability to do the following activities been reduced as a result of having cancer?

62

*

* * * *

* *

*

*

*

*

* * * *

*

* *

* * *

46%

35%

33%

28%

25%

18%

11%

33%

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

Goes to doctor visits with me

Does some household chores (shopping, cleaning, mealprep)

Listens to me and encourages me

Pays some bills

Communicates with my medical team

Handles insurance issues

Helps me bathe and dress

I don't have a caregiver

Caregiver Activities

In Active Treatment (n=102)


One-third of patients in active treatment reported not having a caregiver. Among those that did, nearly half said their caregiver accompanied them to doctor visits. Other activities included doing household chores, providing emotional support, paying some bills, and communicating with the medical team.

41. Please indicate the ways your caregiver helps make your quality of life better.

63

Among those ages 25 to 44, 39% of respondents indicated that their insurance company required they follow a step-therapy process to manage symptoms/side effects. For a majority of these patients, this required using a non-preferred medicine for 2 to 3 months.


39%

55%

6% 7%

88%

5%

0%

20%

40%

60%

80%

100%

Yes No Don't know

Insurance Company Required Step Therapy

25 to 44 (n=145) 45 and older (n=382)

21%

56%

21%

0

20

40

60

One month orless

Two to threemonths

Four to sixmonths

Step Therapy: Required Time for Using Mandated Medicine

25 to 44 (n=145)

23. Has your insurance company ever required you to follow ''step therapy'' to manage any symptoms/side effects you experienced? 24. How long did you have to use the first medicine before you could have the one you and/or your doctor preferred to manage your symptoms/side effects?

64

*

*

Survey 6: Survivorship


Survey 6: Survivorship

CancerCare © 2016 Patient Access and Engagement Report - Confidential – Not For Distribution. 66 66

A C

* *

66

3% 6%

15%

25% 28%

24%

18% 21%

14%

22% 23%

3%

0%

10%

20%

30%

40%

25-34 35-44 45-54 55-64 65-74 75 andOlder

% o

f pop

ulat

ion

Age Distribution

US Census Survey 6

12% 5%

16% 2% 0%

64%

1%

23%

2% 8% 1% 0%

66%

1% 0%

20%

40%

60%

80%

100%

AfricanAmerican


PacificIslander

White Other

% o

f pop

ulat

ion

Ethnic Distribution

US Census Survey 6

24%

10% 14%

18%

12% 12% 10% 9% 10% 10%

21% 19% 17%

7%

0%

10%

20%

30%

40%

< $25K $25K-$34.9K

$35K-$49.9K

$50K-$74.9K

$75K-$99.9K

$100K-$149.9K

$150K +

% o

f pop

ulat

ion

Income Distribution

US Census Survey 6

12%

30% 17%

10% 20%

11% 1%

12% 26%

12%

29%

19%

0%

20%

40%

60%

80%

100%

< HighSchool

HighSchool

SomeCollege


% o

f pop

ulat

ion


US Census Survey 6

n=505

18%

14%

8%

5%

7%

5% 4% 4% 4% 4% 4% 3% 3% 3% 4%

9%

14% 13%

8%

13%

5% 4%

5% 4%

3%

5%

3% 1%

5%

2%

6%

9%

0%

2%

4%

6%

8%

10%

12%

14%

16%

18%

20%

Breast Prostate Colonor Rectal

Lung Endometrial,Cervical,Ovarian

Thyroid Bladder Kidney Head/neck Lymphoma Leukemia Brain Melanoma Liver Pancreatic,Myeloma,Stomach

Other

% o

f res

pond

ents



Respondents to this survey were diagnosed with a range of cancer types. By design, participants were selected to achieve a roughly 50/50 split between those presenting with one of the four most common cancer types (breast, prostate, colorectal, lung) vs all others. Non-melanoma skin cancer was excluded from this sample.





n=505

< 2% each

Note: percentages may be off by 1% due to rounding

67

Having cancer changes lives, especially for those aged 25 to 54 years. About one-half of the respondents in this age bracket reported a lot or complete change in the physical, emotional, financial, social, and spiritual aspects of their lives. Another one-quarter reported moderate changes in these areas.

56% 32%

52%

24% 47%

19%

46% 23%

43% 19%

25%

30%

24%

32%

25%

21%

30%

19%

26%

24%

19% 38%

24% 44%

29%

61%

24%

58%

31%

57%

0%

20%

40%

60%

80%

100%

25-54Years Old(n=267)

55 andOlder

(n=238)


55 andOlder

(n=238)


55 andOlder

(n=238)


55 andOlder

(n=238)


55 andOlder

(n=238)

% o

f res

pond

ents

Changes in Life Since Cancer Diagnosis

A Lot or Complete Change Moderate Change Slight or No Change


*Indicates statistically greater at 90% confidence level 10. Compared to before you were first diagnosed with cancer, how much change has there been in the following aspects of your life?

*

* *

* * *

Physical Emotional

* * * *

Social Financial Spiritual

* *

68

*

Indicates statistically greater at 90% confidence level 31. Please indicate how much you agree or disagree with the following statements:

Women who responded to the survey were much more likely than men to report that having cancer resulted in positive changes in their outlook on life and their relationships with family and friends. Those respondents treated in academic medical centers were also more likely to report these positive changes than those treated in community facilities.


Agree / Strongly Agree

Male (n=267)

Female (n=238)

My friends and loved ones have provided me with wonderful support and care. 62% 76%

For each new day, I feel more grateful than I did before I was diagnosed with cancer. 55% 69%

I appreciate my friends and family more than I did before my diagnosis. 49% 59%

I look for the 'good' in people and situations more than I used to. 46% 57%

Other people with cancer have been helpful in supporting and advising me. 39% 59%

My relationships have become stronger since I was diagnosed. 42% 52%

Since my diagnosis, I discovered friends I didn’t know I had. 26% 35%

The Impact of Cancer on Relationships

69

14%

14%

16%

19%

13%

20%

15%

20%

10%

14%

20%

28%

71%

66%

74%

66%

67%

52%

0% 20% 40% 60% 80% 100%

% of respondents

35%

38%

39%

40%

42%

48%

30%

24%

28%

29%

30%

28%

35%

38%

33%

31%

29%

24%

0% 20% 40% 60% 80% 100%

How long you expect to live

Ability to do things you love to do

Ability to work

Finances

How you feel physically

The impact of your cancer on yourfamily

% of respondents

Highly or Extremely Distressed Somewhat Distressed Not At All or Slightly Distressed

Cancer-Related Distress 25-54 Years Old (n=267) 55 and Older (n=238)

For the vast majority of respondents, being diagnosed with cancer caused distress. The impact of cancer on their family was most often reported as being extremely stressful. In all aspects of life mentioned in this survey, respondents aged 25 to 54 years were significantly more likely than those aged 55 years and older to report being highly or extremely distressed.


*

*

*

*

*

*

*Indicates statistically greater at 90% confidence level 11. How distressed (anxious, extremely upset, or in emotional pain, for example) have you been due to the impact cancer has had on the following aspects of your life?

*

*

*

*

*

*

*

*

*

*

70

35%

44%

35%

38%

37%

46%

36%

28%

21%

31%

33%

32%

29%

29%

44%

31%

30%

22%

0% 20% 40% 60% 80% 100%

% of respondents

36%

38%

38%

40%

41%

51%

21%

33%

28%

28%

23%

23%

43%

30%

34%

33%

37%

26%

0% 20% 40% 60% 80% 100%

How long you expect to live

How you feel physically

Ability to do things you love to do

Finances

Ability to work

The impact of your cancer on your family

% of respondents

Highly or Extremely Distressed Somewhat Distressed Not At All or Slightly Distressed

Cancer-Related Distress – Ages 25 to 54 White (n=120) African American / Hispanic (n=133)

Respondents aged 25 to 54 years experienced similar levels of distress due to the impact of cancer, regardless of ethnicity. African Americans / Hispanics, however, were significantly more likely than whites to report being distressed about how long they expected to live.


*Indicates statistically greater at 90% confidence level 11. How distressed (anxious, extremely upset, or in emotional pain, for example) have you been due to the impact cancer has had on the following aspects of your life?

*

* *

71

The onset of cancer prompted those respondents under 45 years to have various end-of-life–related conversations with family to a greater extent than it did those 45 years and older. Despite their cancer diagnosis, 20% to 50% of those aged 45 years and older had not communicated their wishes regarding key end-of-life issues to their family.

36% 52%

22% 27% 25% 47%

19% 22% 25% 30% 25% 44%

19%

24%

34% 44%

34%

29%

41% 48% 39%

48% 43%

34%

45% 23%

43% 29%

41% 25%

40% 30% 36%

22% 32%

22%

0%

20%

40%

60%

80%

100%


45 andOlder

(n=307)


45 andOlder

(n=307)


45 andOlder

(n=307)


45 andOlder

(n=307)


45 andOlder

(n=307)


45 andOlder

(n=307)

% o

f res

pond

ents

Discussion Topics with Family Since Being Diagnosed with Cancer

Have Not Done This Did Before Diagnosed Did After Diagnosed


*Indicates statistically greater at 90% confidence level 15. Please indicate whether you have spoken with your family or loved ones about the following topics and if you have, whether the conversations first occurred before or after you were diagnosed with cancer:

*

* * * * *

Where you would prefer to spend

your last days

*

*

*

*

*

*

When life-prolonging medical care

should be used

Fears and concerns

about dying

Who will make medical decisions

If not able to

Beliefs about preserving life as long as possible

Ideas and hopes about the end of life

72

After being diagnosed with cancer, about one-third of those under 45 years created legal documents reflecting their end-of-life wishes. Despite a cancer diagnosis, 29% to 46% of respondents had not completed any of the legal documents queried, such as a medical power of attorney, healthcare proxy, living will, or last will and testament.

36% 46%

29% 40% 40% 42% 37% 40%

27%

32%

35%

35% 28% 33%

33% 47%

37% 22%

36% 25% 32% 25% 30%

14%

0%

20%

40%

60%

80%

100%


45 andOlder

(n=307)


45 andOlder

(n=307)


45 andOlder

(n=307)


45 andOlder

(n=307)

% o

f res

pond

ents

Actions Taken by Those Diagnosed with Cancer

Have Not Done This Did Before Diagnosed Did After Diagnosed


*Indicates statistically greater at 90% confidence level 21. Please indicate if and when you have done the following.

*

* *

*

*

*

Created a medical/health care power of attorney

Chose a health care proxy

Created a living will

Created a last will and testament

73

*

46% 48% 49%

32% 23% 27% 22%

29% 24%

0%

20%

40%

60%

80%

100%

Palliative Care Living Will Hospice Care

% o

f res

pond

ents

55 and Older

Not At All or Slightly Helpful Somewhat Helpful Very or Extremely Helpful

40% 29%

37% 34% 36% 27% 26%

36% 37%

0%20%40%60%80%

100%

Palliative Care Living Will Hospice Care

% o

f res

pond

ents

25 to 54 Years Old

*Indicates statistically greater at 90% confidence level 30. How helpful would it be for you to receive additional information about each of the following?

*

From 22% to 37% of respondents indicated that additional information about Palliative Care, Living Wills, or Hospice Care would have been helpful to them. Those 55 years and older were significantly more likely to report that information on Living Wills and Hospice Care would not have been helpful. More than one-third of 25- to 54-year-old respondents said that more information on these topics would have been helpful.


(n=238)

(n=267)

*

* *

Usefulness of Information

74

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