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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
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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
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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
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Survey 1: Diagnosis
Age Distribution
Ethnic Distribution
29%
25%
30%
20%
10%
11%
6%
9%
3%
100%
30%
28%
% of population
% of population
40%
24%
15%13%
9%
0%
25-34
35-44
45-54
US Census
60%
40%
20%
12% 16%
5% 3%
75 and
Older
African
American
Asian
Survey 1
24%
12%
10%
10%
14%12%
8%
18% 19% 17%
16%
12%
12%
10%
8%
0%
< $25K
Survey 1
2% 2%
0% 0%
Multi
Racial
Pacific
Islander
White
Other
Survey 1
Education Distribution
60%
40%
20%
30%
12%
15%
24%
17%
High
School
Some
College
10%13%
20%
28%
11% 19%
1%
< High
School
n=500
1% 2%
80%
0%
$25K- $35K- $50K- $75K- $100K- $150K +
$34.9K $49.9K $74.9K $99.9K $149.9K
US Census
Hispanic
US Census
100%
20%
16%
8%
0%
% of population
% of population
65-74
64% 68%
Income Distribution
40%
30%
55-64
80%
US Census
Associates Bachelor's Masters /
Doctorate
Survey 1
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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.
Distribution of Respondents by Cancer Type – Survey 1
Remaining Cancer Types (49%)
Major Cancer Types (51%)
30%
% of respondents
25%
26%
24%
20%
20%
15%
14%
15%
13%
10%
13%
7%
8%
6%
6%
4%
5%
6% 5%
5%
3%
5% 5%
4% 4%
Bladder
Kidney
3%
5%
0%
Breast
Prostate
Colon
or Rectal
Lung
Thyroid
Endometrial, Leukemia
Cervical,
Ovarian
Lymphoma
Other
n=500
CancerCare
2015 ACS Incidence
4. What type of cancer were you most recently diagnosed with?
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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
74%
I understood what it would cost me.
68%
48% *
I talked about the costs with my doctor or a member of
his/her staff before I had the tests.
25%
21%
I did not follow some of my doctor’s recommendations
because of the costs.
*
4%
0%
20%
40%
60%
80%
100%
% 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.
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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
62%
I understood what it would cost me.
81%*
26%
I talked about the costs with my doctor or a member of
his/her staff before I had the tests.
64% *
9%
I did not follow some of my doctor’s recommendations
because of the costs.
31% *
0%
20%
40%
60%
80%
100%
% Agreeing or Agreeing Strongly
White (n=65)
African American / Hispanic (n=75)
*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.
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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 54year-old respondents did not agree with and did not follow testing recommendations.
Opinions About Testing
Confidence in Medical Professional
Convenience
89%
95%*
It was easy to schedule them.
Testing and interpretation of
results done in reasonable
amount of time.
89%
94%*
Could do them at convenient
locations.
87%
89%
71%
80%*
Only a few days wait to get the
tests.
0%
I was confident in the expertise of
the medical professionals
diagnosing me
91%
*
97%
26%*
Disagreed with some of doctor’s
recommendation & didn't follow
them
7%
20% 40% 60% 80% 100%
0%
% Agreeing or Agreeing Strongly
% Agreeing or Agreeing Strongly
25 to 54 Year Olds (n=162)
55 and Older (n=338)
20% 40% 60% 80% 100%
25 to 54 Year Olds (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.
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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.
Conversations Patients Had Shortly After Cancer Diagnosis
Physician
82%
35% *
Nurse
22% *
Office Staff
12%
18%*
23% *
94%
Physician
53%
Nurse
46%
27%* 9%*
35%
Social Worker
22% * 11%*
33%
Social Worker
50%
PA or NP
34%
0%
*
20%
*
16%
40%
60%
80%
100%
93%
28%
20% 8%
20%
11%
Religious Leader 9%
7%
21%
17%
0%
20%
40%
60%
80% 100%
% of 55 and Older (n=338)
% of 25 to 54 Year Olds (n=162)
Face-to-Face
12%
Office Staff 11%9%
Religious Leader
PA or NP
81%
Telephone or Email
*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
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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.
Conversations Patients Had Shortly After Cancer Diagnosis – 25 to 54 years old
Physician
77%
Nurse
Office Staff
Physician
52%
Nurse
23%
42%
Office Staff
23% 12%
35%
PA or NP
20%
25%
Religious Leader
33% *
12%
45% *
18%
Social Worker
32% *
15%
47%
20%
40%
18%
Religious Leader
Social Worker 11%
0%
89% *
91%
35%
PA or NP
14%
17%
5%
8%
20%
40%
60%
80%
36%
25%
19%
99% *
55%
23%
41% *
0%
100%
9%
48%
21%
60%
63%
80%
*
*
100%
% of African American /
Hispanic (n=75)
% of White (n=65)
Face-to-Face
Telephone or Email
*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
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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.
Level of Understanding of Conversation
% of respondents saying
understood a lot / extremely well
100%
80%
89% *
78%
90% *
84%
77%
74%
86%*
72%
60%
40%
20%
0%
Physician
n = 152
315
Nurse
86
93
25 to 54 Years Old
PA or NP
81
71
Physician Staff
74
69
55 and Older
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?
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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.
% of Respondents Receiving All or Some of the Information They Needed
% of respondents
100%
80%
93%
35%
88%
79%
72%
62%
34%
32%
60%
32%
32%
40%
58%
54%
47%
20%
40%
30%
0%
Understanding the
kind of cancer I had
Understanding the
stage of cancer I had
Insurance coverage Finding emotional and
for the diagnosis
practical support
process
All of the Information
Patient support
organizations
n=500
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?
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Survey 2: Treatment Planning
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Survey 2: Treatment Planning
Age Distribution
30%
25%
30%
20%
10%
33%
28%
% of population
% of population
40%
24%
15% 15%
9%
3%
8%
6%
6%
35-44
45-54
US Census
20%
10%
65-74
60%
40%
20%
12% 13%
African
American
75 and
*
Older
5% 2%
16%
10%
Asian
Hispanic
US Census
Survey 2
2% 2%
0% 1%
Multi
Racial
Pacific
Islander
24%
17%
10%11%
14%
12%
18% 19%
16%
15%
12%
12%
10%
5%
0%
US Census
Survey 2
Other
Survey 2
60%
40%
20%
30%
12%
12%
25%
17%
31%
10%13%
20%
11% 18%
1%
< High
School
n=504
White
80%
0%
< $25K $25K- $35K- $50K- $75K- $100K- $150K +
$34.9K $49.9K $74.9K $99.9K $149.9K
1% 1%
Education Distribution
100%
% of population
% of population
30%
55-64
Income Distribution
40%
72%
64%
80%
0%
0%
25-34
Ethnic Distribution
100%
High
School
Some
College
US Census
Associates Bachelor's Masters /
Doctorate
Survey 2
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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.
Distribution of Respondents by Cancer Type – Survey 2
Major Cancer Types (47%)
Remaining Cancer Types (53%)
20%
18%
% of respondents
16%
14%
18%
17%
16%
14%
15%
13%
13%
12%
10%
8% 8%
8%
9%
8%
8%
6%
6%
5%
6%
4%
4%
4%
5%
6%
5% 5%
2%
2%
3%
2%
0%
Breast
Prostate
Lung
Colon or
rectal
Endometrial,
Cervical,
Ovarian
CancerCare
Kidney
Thyroid
Bladder
Melanoma
Lymphoma,
Leukemia
Stomach,
Brain
2015 ACS Incidence
Other
n=504
6. What type of cancer were you most recently diagnosed with?
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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.
% of Patients With Enough Information About Aspects of Cancer Treatment
Number of Respondents
The benefits of the treatment plan
The possible side effects of the treatments
The goals of the plan (cure, control, keeping you comfortable)
The symptoms you may experience
The reasons your team recommended this treatment plan
The impact on your activities of daily living
The risks of the treatment plan
The medicines you need to take
Whether or not you'll be able to work
The care you will need at home
The emotional impact of cancer and its treatment
The cost to you of the treatment plan
Other treatment options your care team considered
The responsibilities of your caregiver(s)
Clinical trial opportunities
Treatment Facility
Academic
Community
Medical
Hospital/Cancer
Center
Center/MD
148
325
72%
69%
71%
66%
67%
70%
64%
62%
45%
45%
53%
37%
36%
20%
18%
66%
63%
60%
60%
60%
52%
54%
55%
43%
42%
38%
36%
30%
16%
12%
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?
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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.
Finalizing the Treatment Plan
100%
% of respondents
80%
60%
40%
57%
45%*
53%
37%
20%
0%
Got second opinion about treatment plan
Ages 25-54 (n=163)
Received written copy of treatment plan
Ages 55 and older (n=341)
* 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?
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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.
Helpfulness of Patient Navigator
Patient Navigator Provided
(% of respondents)
80%
Yes
23%
% of respondents
Don't
Know
13%
100%
80%
60%
40%
14%
20%
No
64%
n=504
0%
Very or
Moderately
Somewhat
6%
Not At All
or Rarely
n=118
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?
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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.
Patients' Primary Caregiver
Who Accompanies Patient to Doctor Visits
80%
80%
60%
48%49%
37% *
40%
20%
20% *
4%
60%
61% *
4% 5%
40%
Child
Friend
/ Other
6%
Don't Have
a Caregiver
23%
17% *
20%
6% 4%
47% *
47%
22%
0%
Spouse / Other Family
Sig. Other
Member
% of respondents
100%
% of respondents
100%
10%
2%
3% 2%
Caregiver
Other
0%
Family
Member
Friend
Ages 25 to 54 (n=163)
Ages 25 to 54 (n=163)
Ages 55 and Older (n=341)
Ages 55 and Older (n=341)
I go alone
* 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?
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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.)
Treatment Adherence
Take prescription
medication exactly
as directed
% of respondents
100%
9%*
Fill all prescriptions
my doctor gives me
11%*
11%
*
15%
80%
60%
40%
Take OTC
medications exactly
as my doctor says
89%
92%
Follow my care
team's sleep
recommendations
17%
*
10%
34%
22%
57%
61%
9%
12%
9%
Follow my care
team's diet
recommendations
*
Follow my care
team's exercise
recommendations
15%
9%
36%
26%
38%
53%
58%
53%
*
*
18%
*
30%
*
87%
92%
74%
79%
20%
52%
0%
25-54 55 and
Years Older
Old (n=341)
(n=163)
25-54 55 and
Years Older
Old (n=341)
(n=163)
25-54 55 and
Years Older
Old (n=341)
(n=163)
Never or Rarely
25-54 55 and
Years Older
Old (n=341)
(n=163)
Sometimes
25-54 55 and
Years Older
Old (n=341)
(n=163)
25 to 55 and
54
Older
Years (n=341)
Old
(n=163)
Often or Always
*Indicates statistically greater at 90% confidence level
32. How often do you do each of the following?
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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.)
Frequency Care Team Asks About Level of Distress
% of respondents
100%
80%
*
58%
60%
50% 51%
40%
*
23%
20%
0%
47%
26%
18% 18%
7% 8% 6% 7%
Never
5% 8%
Once
14% 16% 16% 14%
2%
Twice
6%
More than twice
At each visit
Total (n=504)
In Active Treatment (n=89)
Completed Treatment, On Maintenance Therapy (n=110)
Completed Treatment, Not On Maintenance Therapy (n=284)
* 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)?
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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.
Very or Somewhat Satisfied with Attention Care Team Pays to Aspects of Care
Your convenience in receiving the
treatment
85%
78%
Providing the most up-to-date treatment
83%
84%
*
71%
65%
The side effects of the treatments
69%
67%
*
The cost to you of the treatment plan
*
The care you need at home
82%
How you feel physically, day to day
The emotional well-being of your family
54%
65% *
68%
81%
73%
Your emotional well-being
63%
60%
62%
57%
Managing the financial costs of treatment
80%
81%
Your questions about your care plan
Providing materials to help you
understand your cancer and treatment
Explaining the responsibilities of your
caregiver(s)
50%
48%
Whether or not you can work
48%
51%
78%
79%
76%
68%
The impact on your activities of daily living
*
73%
72%
The symptoms you experience
0%
Male (n=216)
20%
40%
60%
80% 100%
Female (n=288)
43%
47%
Offering new treatment options
23%
24%
Clinical trial opportunities
0%
Male (n=216)
20%
40%
60%
80% 100%
Female (n=288)
*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.
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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.
Opinions about Their Cancer Treatment
Age
I trust my doctor's decisions/advice regarding
treatment of my cancer.
I know what each of my medications is for.
I am getting the best cancer care for me.
I am getting the most advanced cancer care
available.
I always take my cancer medications on
schedule.
My care team knows my end-of-life wishes.
I am considering or have considered
alternative treatments for my cancer.
I suggest new treatment options or ways to
treat my cancer to my doctor.
I switched to a new doctor or treatment
center.
I take medicines that I don't tell my care team
about.
Treatment Facility
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)
90%
89%
90%
93%
89%
84%
83%
83%
81%
84%
84%
81%
80%
74%
76%
73%
89% *
94% *
86% *
59%
69% *
54%
57%
58%
44%
42%
45%
46%
44%
21%
37% *
14%
24%
20%
23%
33% *
18%
23%
22%
16%
25% *
11%
18%
15%
9%
17% *
5%
9%
10%
70%
*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:
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Survey 3: Communication
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Survey 3: Communication
Age Distribution
30%
20%
10%
25%
24%
13%
3%
12%
33%
28%
24%
15%
13%
6%
6%
0%
35-44
45-54
US Census
*
55-64
65-74
72%
40%
20%
16%
9%
12% 16%
5% 2%
African
American
Survey 3
Asian
Hispanic
US Census
Income Distribution
2% 2%
0% 0%
Multi
Racial
Pacific
Islander
1% 0%
White
Other
Survey 3
Education Distribution
100%
24%
22%
18%
20%
11% 10%
14%
12%
20%
12%
8%
15%
12%
10% 9%
0%
% of population
% of population
64%
60%
75 and
Older *
40%
10%
80%
0%
25-34
30%
Ethnic Distribution
100%
% of population
% of population
40%
80%
60%
40%
20%
0%
< $25K
$25K- $35K- $50K- $75K- $100K- $150K +
$34.9K $49.9K $74.9K $99.9K $149.9K
US Census
Survey 3
N=501
33%
30%
12%
13%
17%21%
High
School
Some
College
10%12%
20%
11% 18%
2%
< High
School
US Census
Associates Bachelor's Masters /
Doctorate
Survey 3
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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.
Distribution of Respondents by Cancer Type – Survey 3
Major Cancer Types (51%)
25%
24%
Remaining Cancer Types (49%)
% of respondents
20%
15%
14%
15%
13%
< 2%
each
14%
13%
10%
8%
6%
8%
6%
0%
Breast
Prostate
Lung
7%
5%
5%
2% to
3%
each
Colon or rectal Endometrial,
Cervical,
Ovarian
CancerCare
4%
Kidney
6%
4%
Thyroid
4%
11%
10%
10%
6%
5%
Bladder
9%
Lymphoma,
Leukemia,
Melanoma,
Head/Neck
Pancreatic,
Stomach,
Brain, Liver,
Myeloma
Other
2015 ACS Incidence
n=501
5. What type of cancer were you most recently diagnosed with?
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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%
100%
80%
60%
40%
20%
4%
0%
2%
% of respondents
% of respondents
100%
Understand What Health-Care
Providers are Discussing
94%
100%
80%
60%
40%
20%
Able to Connect with Care Team
in Reasonable Time
6%
0%
0%
% of respondents
Satisfaction with Coordination
by Care Team
5%
8%
14%
10%
89%
81%
86%
PCP
Oncologist
Nurse
80%
60%
40%
20%
0%
Very/Somewhat Satisfied
All / Most of the Time
Always/Often
Neither Satisfied nor
Dissatisfied
Very/Somewhat Dissatisfied
Sometimes
Sometimes
Not Often / Never
Rarely/Never
N=501
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?
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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.
Patients’ Perceptions of their Doctors
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%
Indicates statistically greater at 90% confidence level
31. Please indicate how often you believe the following statements to be true?
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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.
Patients’ Perceptions of their Doctors – Ages 25 to 54
Often or Always Agree
Never or Rarely Agree
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%
Indicates statistically greater at 90% confidence level
31. Please indicate how often you believe the following statements to be true?
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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.
Patient Complaints About Medical Care
Often or Always Agree
Never or Rarely Agree
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%
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.
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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.
Care Team Members
100%
77%
80%
% of respondents
67%
*
67%
64% *
61%
60%
52%
46%
46%
43%
40%
40%
35%
*
37%
25%
25%
15%
20%
11%
0%
Oncologist
PCP
Radiologist
Active Treatment (n=111)
Nurse
PA or NP
Family or
Caregivers
Pharmacist
Social Worker or
Psychologist
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?
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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.
Patient Portal Provided by Physician
Use of Patient Portal
100%
100%
19%
80%
75%
60%
40%
11%
17%
14% 16%
0%
Yes
No
Don't Know
% of respondents
% of respondents
68%
20%
29%
80%
27%
60%
38%
*
40%
*
54%
20%
33%
0%
In Active Treatment
(n=83)
Completed Treatment / On
Maintenance (n=113)
In Active Treatment (n=111)
Completed Treatment / On Maintenance (n=167)
Always or Often
Sometimes
Never or Rarely
* 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?
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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.
Distress Concerns Raised by Care Team Members
% of respondents
100%
80%
*
54%
60%
43%
40%
52%*
40%
47%
40%
46%
39%
37%*
21%
20%
0%
Side Effects
Worry/Anxiety
About Future
Lifestyle Concerns
Daily Living
Activities
Sexual/Intimacy
Concerns
Male (n=218)
23%
*
29%
26%
Family
Concerns
38%*
20%
Financial
Challenges
18%
23%
Work-Related
Concerns
16% 18%
End of Life
Concerns
15%
Hair Loss/
Body Image
Female (n=283)
*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.
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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.
Care Team Members Making Support Referrals - Emotional
% of respondents
60%
Per survey 6, incidence of distress for 25-54
year olds is 62%-74%; for 55 and older, it’s
26% to 48%
40%
36% *
27% *
20%
13%
15%
*
14%
9%
12%*
11%*
4%
6%
10%*
3%
0%
PCP
Oncologist
Family Member/
Caregiver
25 to 54 Years Old (n=189)
PA or NP
Nurse
Social Worker
or Psychologist
55 and Older (n=312)
n=501
*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?
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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.
Care Team Members Making Support Referrals - Financial
% of respondents
40%
Per survey 6, incidence of distress regarding
finances for 25-54 year olds is 69%; for 55
and older, it’s 33%.
22% *
*
19%
20%
13%
*
9%
5%
11%
9% *
7% *
5%
4%
2%
2%
0%
PCP
Oncologist
Family Member/
Caregiver
25 to 54 Years Old (n=189)
PA or NP
Social Worker or
Psychologist
Nurse
55 and Older (n=312)
n=501
*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?
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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
Treatment goals
52%
21%
Work-related concerns
17%
Treatment options
52%
22%
Emotional distress
17%
Sexual/intimacy issues
16%
Symptoms and side effects
48%
Clinical trials
48%
Issues with taking your
medications
Hair loss, concerns about
body image
22%
19%
35%
20%
Diet and exercise
19%
0%
20%
23%
Family-related concerns
7% 8%
13%
28%
34%
19%
17% 8%
10% 15%
15% 8% 17%
40%
Financial challenges 6% 9%
5%
60%
9% 12%
37%
Insurance matters 8% 12% 9%
11% 14%
42%
20%
Costs of treatments
17%
31%
33%
Questions about end of life
5%
20%
80%
100%
0%
20%
27%
20%
14%
22%
40%
60%
80%
100%
n=501
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.
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Survey 4: Finances and Insurance
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Survey 4: Financial & Insurance
Ethnic Distribution
Age Distribution
100%
A
30%
20%
10%
14%
3%
11%
C 25%25%
28% 29%
% of population
% of population
40%
24%
17%
15%
6%
4%
80%
64%
60%
40%
20%
12% 19%
5% 2%
25-34
35-44
45-54
US Census
55-64
65-74
African
American
75 and
Older
Asian
% of population
20%
10%
2% 2%
0% 0%
Multi
Racial
Pacific
Islander
24%
18%
13%
10%11%
14%
12%
White
Other
Survey 4
100%
21%
17%
16%
12%
12%
10%
6%
0%
80%
60%
40%
20%
0%
< $25K $25K- $35K- $50K- $75K- $100K- $150K +
$34.9K $49.9K $74.9K $99.9K $149.9K
US Census
1% 1%
Education Distribution
*
% of population
*
Hispanic
US Census
Survey 4
Income Distribution
40%
30%
16%
6%
0%
0%
71%
Survey 4
30%
12%
30%
17%
17% 22%
10% 11%
20%
11% 18%
1%
< High
School
High
School
Some
College
US Census
Associates Bachelor's Masters /
Doctorate
Survey 4
n=509
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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.
Distribution of Respondents by Cancer Type – Survey 4
Major Cancer Types (53%)
35%
% of respondents
30%
29%
Remaining Cancer Types (47%)
25%
20%
15%
14%
10%
13%
10%
13%
8% 8%
5%
5%
0%
Breast
Prostate
Colon or
rectal
Lung
< 1%
each
2% to
3%
each
7%
5%
Endometrial,
Cervical,
Ovarian
5%
4%
Kidney
CancerCare
5%
4%
Thyroid
5%
3%
4% 5%
Leukemia
Lymphoma
4%
5%
Bladder
7%
9%
8%
9% 9%
4%
Melanoma,
Pancreatic,
Brain
Head/neck,
Myeloma,
Stomach,
Liver
2015 ACS Incidence
Other
n=509
6. What type of cancer were you most recently diagnosed with?
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Just over one-half of survey respondents were covered by Medicare or Medicaid. Blue
Cross/Blue Shield was the leading private insurer.
Type of Insurance and Provider
Insurance Provider
(n=181)
Type of Healthcare Insurance
(n=509)
Medicare / Medicaid
54%
Private (Employer)
Blue Cross / Blue Shield
39%
Private Employer
36%
22%
United Healthcare
Private Medigap
17%
11%
Aetna
Private (Healthcare.gov)
9%
Tricare / Champs
No Insurance
Cigna
4%
0%
Other
8%
Kaiser
4%
Humana
3%
Other
6%
0%
11%
20%
40%
60%
7%
0%
20%
40%
60%
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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.
Perceptions of Insurance Coverage
100%
75%
80%
60%
55%
69%
52%
40%
20%
0%
Understand insurance
coverage
very well or completely
Total (n=509)
Moderately or very
satisfied with
insurance coverage
25 to 64 Years Old (n=341)
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?
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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.
Perceptions of Insurance Coverage – 25 to 64 Years Old
100%
80%
72%
64%
60%
55%
46%
40%
20%
0%
White
(n=212)
African American/
Hispanic
(n=110)
Understand Insurance Coverage
Very Well or Completely
White
(n=212)
African American/
Hispanic
(n=110)
Moderately or Very Satisfied With
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?
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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.
Dissatisfaction With Aspects of Insurance Coverage for Cancer
25 to 64 Years Old (n=341)
The choice of doctors
The choice of hospitals and/or treatment centers
Getting timely approvals for tests or procedures
Access to advanced imaging technology
Access to newly approved treatments or drugs
In-network access to psychological counseling/support
Access to genetic testing
Access to Clinical trials
My ability to pay for medications recommended by my doctor
Affordability of co-payments
Access to an insurance case manager who explains/assists with…
Amount I have to pay for the tests recommended by my doctor
Access to complementary therapies such as acupuncture or massage
Affordability of deductibles
0%
5%
10%
15%
20%
25%
30%
Q. 14: How satisfied are you with the following aspects of your insurance coverage for your cancer treatment?
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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.
Employment Status During Treatment
60%
% of respondents
*
47%
40%
34%
35%
25%
*
20%
14%
14%
8%
0%
10%
*
13%
1%
Continued working
full time
Stopped working
N/A,
Not working before
receiving treatment
25 to 64 Years Old (n=341)
Continued working
part time
Switched from full time to
part time work
65 and Older (n=168)
n=509
10. What was your employment status while you were being treated for cancer?
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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.
Ease of Finding Doctor or Treatment Center Taking Your Insurance
% of respondents
100%
80%
7%
8%
6%
5%
8%
24% *
29% *
60%
40%
90% *
87%
*
67%
65%
20%
0%
25-54 Years Old
(n=215)
55 and Older
(n=294)
25-54 Years Old
(n=215)
Ease of Finding a Doctor
Very / Somewhat Easy
55 and Older
(n=294)
Ease of Finding a Good Hospital /
Treatment Center
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?
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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.
Ease of Determining Out-of-Pocket Costs
100%
% of respondents
80%
21%
25%
26%
28%
24%
25%
24%
41%
37%
35%
35%
32%
Physician Fees
Scans and X-rays
Treatments
Procedures
Hospital fees
31%
60%
25%
23%
40%
20%
0%
n=509
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?
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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.
% of respondents
Frequency Health Team Considers Patient’s Financial Status when Planning Treatment
100%
80%
60%
40%
*
25%
36%
34%
41%
29%
35%
20%
0%
Never or Rarely
Sometimes
Often or Always
% of respondents
Patient’s Level of Financial Distress During Treatment
100%
*
76%
80%
60%
40%
20%
30%*
28%
42%
*
7%
17%
0%
Extremely/Very Distressed
Somewhat Distressed
25 to 64 Years Old (n=341)
Not At All/A Little Distressed
65 and Older (n=168)
*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?
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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.
Average Monthly Out-of-Pocket Costs
$350
Average Cost
$300
*
$299
$200
*
*
$250
$212
*
$208
*
$205
$188
$165
$127
$150
$97
$100
$98
$97
$50
$0
Co-payments and
deductibles for drugs,
doctor visits and tests
Transportation to and
from clinic visits,
baby-sitting,
Services to help with
symptoms and side effects
such as acupuncture or
massage therapy
25 to 64 Years Old (n=341)
Special clothing,
wigs, etc.
Non-prescription
medications
65 and Older (n=168)
* 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?
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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
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)
27%
10%
17%
4%
27%
7%
16%
8%
27%
7%
16%
5%
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
Cut pills in half
16%
14%
3%
4%
14%
17%
2%
4%
Apply for co-pay assistance to cover medication costs
Choose to use a lower cost medication than what the doctor
recommended
Delay or skip complementary treatment
Apply for financial assistance for non-medical expenses such as
transportation
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?
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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
I asked for financial help
from a church or
community organization
36%
41%
I cut back on non-essential
expenses
I cut back on groceries,
transportation, clothing,
tuition
20%
11%
I borrowed money from
family/friends
I applied for financial
assistance from a patient
support organization
31%*
9%
I applied for financial
assistance from my doctor’s
office or hospital
6%
4%
I missed paying bills such as
heat, electricity, phone
0%
33%*
4%
I considered declaring
bankruptcy
4%
I moved to a less
expensive home
24%*
I borrowed money from a
bank or credit union
60%
17%*
11%*
2%
11%*
6%
2%
I declared bankruptcy
40%
17% *
I missed rent/mortgage
payments
24%*
21%*
20%
3%
0%
*
11%
5% *
5%
10%
15%
20%
% of respondents
% of respondents
25 to 54 Years Old (n=215)
55 and Older (n=294)
*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.
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Survey 5: Symptoms and Side Effects
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Survey 5: Symptoms and Quality of Life
Age Distribution
A
30%
20%
10%
25% 24%
C
15%
13%
3%
Ethnic Distribution
100%
28%
25%
% of population
% of population
40%
24%
16%
15%
7%
6%
0%
80%
64%
60%
40%
20%
35-44
45-54
US Census
55-64
65-74
African
American
75 and
Older
Survey 5
Asian
2% 1%
0% 1%
Multi
Racial
Pacific
Islander
1% 1%
White
Other
Survey 5
Education Distribution
40%
100%
24%
23%
18%
20%
12%
10%
% of population
% of population
Hispanic
US Census
*
*
Income
Distribution
30%
16%
7%
12% 17%
5% 2%
0%
25-34
71%
10%
14%13%
18%
12%
6%
15%
12%
10%
6%
0%
< $25K
60%
40%
20%
0%
$25K- $35K- $50K- $75K- $100K- $150K +
$34.9K $49.9K $74.9K $99.9K $149.9K
US Census
80%
30%
12%
High
School
Some
College
15%
10%
20%
27%
11% 18%
1%
< High
School
Survey 5
14%
25%
17%
US Census
Associates Bachelor's Masters /
Doctorate
Survey 5
n=527
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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.
Distribution of Respondents by Cancer Type – Survey 5
Major Cancer Types (47%)
30%
% of respondents
25%
25%
Remaining Cancer Types (53%)
20%
15%
14%
13%
12%
13%
10%
5%
5%
0%
Breast
Prostate
Lung
2% to
3%
each
13%
7%
8%
Colon
or Rectal
Melanoma
6%
5%
Endometrial,
Cervical,
Ovarian
CancerCare
4%
Thyroid
3% 3%
3% 4%
Leukemia
Kidney
< 1%
each
8%
8%
7%
5%
11%
1% to
<2%
each
7%
4%
2%
Lymphoma,
Brain,
Bladder
Head Neck,
Liver,
Pancreatic
9%
3%
Stomach,
Myeloma
2015 ACS Incidence
Other
n=527
5. What type of cancer were you most recently diagnosed with?
Note: percentages may be off by 1% due to rounding
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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.
Clinical Trial Participation
% of respondents
100%
80%
60%
90% *
72%
89% *
81%
80%
18% *
19% *
68%
91% *
90% *
92% *
40%
20%
0%
26% *
10%
9%
Whites
(n=374)
African
Americans/
Hispanics
(n=125)
Top 4
Cancers
(n=250)
All Other
Cancers
(n=277)
Yes
30% *
8%
Diagnosed 1 Diagnosed
to 4 Years More Than 4
Ago
Years Ago
(n=301)
(n=226)
25 to 44
Years Old
(n=145)
9%
7%
45 to 64
Years Old
(n=212)
65 and
Older
(n=170)
No
*Indicates statistically greater at 90% confidence level
9. Have you ever been part of a clinical trial for cancer treatment?
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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%).
Use of “Distress Thermometer Form”
Gender
Age
100%
Distress Thermometer Form
% of respondents
80%
57%
60%
80%
*
85%
*
93%
40%
20%
*
19%
0%
Males
(n=200)
*
43%
12%
Females
(n=327)
Yes
25 to 44
Years Old
(n=145)
No
45 or Older
(n=382)
Don't Know
* Indicates statistically greater at 90% confidence level
40. Have you ever been asked to complete the “Distress Thermometer” form, which is pictured below?
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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.
Common Symptoms and Side Effects
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%
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?
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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.
Satisfaction With Preparation By Care Team for Symptoms and Side Effects
% of respondents
100%
80%
*
35%
60%
14%
40%
20%
52%
13%
17%
16%
20%
*
21%
23%
29%*
25%
*
67%
61%
*
*
62%
47%
0%
25 to 44 Years Old
(n=145)
45 to 54 Years Old 55 and Older (n=298)
(n=84)
Very or Somewhat Satisfied
Neither Satisfied or Dissatisfied
In Active Treatment Completed Treatment
(n=102)
- On Maintenance
(n=118)
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?
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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)
Discuss Symptoms/Side Effects With Doctor
80%
Discuss Symptoms/Side Effects with PA or NP
54%
Discuss Symptoms/Side Effects with Nurse
Wonder Whether I’m Receiving the Best Care
Downplay/Make Light of Symptoms/Side
Effects When Describing To Doctor
Change Treatment Because of
Symptoms/Side Effects
Use Complementary/Alternative Treatments
to Manage Symptoms/Side Effects
Not Report Symptoms/Side Effects - Don’t
Want to Bother Doctor
32%
24%
28%
18%
49%
20%
52%
20%
30%*
50%
20%
40%
60%
80%
% of respondents
Always or Often
53%
67%*
20%
20%
15% 17%
100%
0%
20%
17%
54% *
26%
25%
20%
38%
28%
13%
63%
20% 7%
27%
45%
42%
28%
21%
53%
13%
21%
17%
74%
17%
40%
26%
0%
16%
29%
47%
Completed Treatment - On Maintenance (n=118)
55%
68%
40%
60%
80%
100%
% of respondents
Sometimes
Never or Rarely
*Indicates statistically greater at 90% confidence level
20. How often do/did you take the following actions?
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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.
Use of Cancer Specific Counseling/Support Services
60%
51%*
47%*
% of respondents
50%
40%
30%
26%
26%
22%
16%
20%
10%
0%
Male
(n=200)
Female
(n=327)
Gender
25 to 44
Years Old
(n=145)
Age
45 Years
or Older
(n=382)
Active
Treatment
(n=102)
Non-Active
Treatment
(n=408)
Treatment Status
*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?
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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.
50%
40%
46%
Activities Reduced Completely or A Lot
*
*
37%
*
37%
*
34%
30%
20%
19%
*
31%
*
*
30%
*
34%
*
26%
33%
*
25%
*
24%
*
*
28%
26%
*
*
28%
24%
9%
12%
*
19%
19%
17%
12%
10%
*
36%
*
22%
*
14%
13%
7%
4%
7%
*
*
13% 13%
6%
3%
0%
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?
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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.
Caregiver Activities
I don't have a caregiver
33%
Helps me bathe and dress
11%
Handles insurance issues
18%
Communicates with my medical team
25%
Pays some bills
28%
Listens to me and encourages me
33%
Does some household chores (shopping, cleaning, meal
prep)
35%
Goes to doctor visits with me
46%
0%
10%
20%
30%
40%
50%
In Active Treatment (n=102)
41. Please indicate the ways your caregiver helps make your quality of life better.
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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.
Step Therapy: Required Time
for Using Mandated Medicine
Insurance Company Required
Step Therapy
100%
60
*
56%
88%
80%
40
55%
60%
*
40%
39%
21%
21%
20
20%
7%
6% 5%
0
0%
Yes
25 to 44 (n=145)
No
Don't know
45 and older (n=382)
One month or
less
Two to three
months
Four to six
months
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?
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Survey 6: Survivorship
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Survey 6: Survivorship
Age Distribution
A
30%
20%
10%
18%
3%
25%
C
21%
Ethnic Distribution
100%
% of population
% of population
40%
28%
22%
23% 24%
15%
14%
6%
3%
0%
80%
64% 66%
60%
40%
20%
12%
23%
5% 2%
0%
25-34
35-44
45-54
US Census
55-64
65-74
African
American
75 and
Older
Survey 6
Asian
0% 0%
Multi
Racial
Pacific
Islander
1% 1%
White
Other
Survey 6
100%
24%
21%
18%
20%
9%
14%
10%
10%10%
19%
12%
17%
12%
10%
7%
% of population
% of population
2% 1%
Education Distribution
40%
10%
Hispanic
US Census
*
*
Income
Distribution
30%
16%
8%
0%
< $25K
60%
40%
20%
0%
$25K- $35K- $50K- $75K- $100K- $150K +
$34.9K $49.9K $74.9K $99.9K $149.9K
US Census
80%
30%
12%
12%
29%
10%12%
20%
11%
19%
1%
< High
School
Survey 6
26%
17%
High
School
Some
College
US Census
Associates Bachelor's Masters /
Doctorate
Survey 6
n=505
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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.
Distribution of Respondents by Cancer Type – Survey 6
Major Cancer Types (45%)
20%
18%
% of respondents
16%
14%
18%
Remaining Cancer Types (55%)
14% 14%
13%
13%
12%
10%
8% 8%
8%
5% 5%
5%
6%
< 2%
each
7%
4%
4%
4% 5%
4%4%
4%
3%
5%
4%
5%
4%
3%
3%
1%
2%
0%
3%
Breast
Prostate
Colon
or Rectal
Lung
Endometrial,
Cervical,
Ovarian
Thyroid
Bladder
CancerCare
Kidney
Head/neck Lymphoma
Leukemia
Brain
Melanoma
3%
2%
Liver
9% 9%
6%
4%
Pancreatic,
Myeloma,
Stomach
2015 ACS Incidence
Other
n=505
5. What type of cancer were you most recently diagnosed with?
Note: percentages may be off by 1% due to rounding
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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.
Changes in Life Since Cancer Diagnosis
Physical
Emotional
Social
Financial
Spiritual
100%
% of respondents
19%
80%
60%
25%
24%
*
44%
24%
*
30%
40%
20%
*
38%
*
56%
24%
29%
*
61%
25%
*
30%
*
32%
*
52%
32%
*
47%
24%
21%
19%
*
46%
31%
*
58%
*
57%
26%
19%
*
43%
23%
24%
19%
0%
25-54
55 and
Years Old
Older
(n=267) (n=238)
25-54
55 and
Years Old
Older
(n=267) (n=238)
A Lot or Complete Change
25-54
55 and
Years Old
Older
(n=267) (n=238)
Moderate Change
25-54
55 and
Years Old
Older
(n=267) (n=238)
25-54
55 and
Years Old
Older
(n=267) (n=238)
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?
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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.
The Impact of Cancer on Relationships
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%
Indicates statistically greater at 90% confidence level
31. Please indicate how much you agree or disagree with the following statements:
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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.
Cancer-Related Distress
25-54 Years Old (n=267)
The impact of your cancer on your
family
48% *
28%
30% *
How you feel physically
42%*
Finances
40%*
29%*
Ability to work
39%*
28% *
Ability to do things you love to do
38%*
24%
How long you expect to live
35%*
*
30%
0%
20%
40%
55 and Older (n=238)
20%
24%
13%
29%
19%
31%
38%
60%
14%
Somewhat Distressed
74%*
66% *
20%
100%
0%
20%
% of respondents
Highly or Extremely Distressed
66%*
14%
71% *
14% 15%
35%
80%
67%*
20%
16% 10%
33%
52%*
28%
40%
60%
80%
100%
% of respondents
Not At All or Slightly 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?
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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.
Cancer-Related Distress – Ages 25 to 54
White (n=120)
The impact of your cancer on your family
51%
Ability to work
41%
Finances
40%
Ability to do things you love to do
38%
How you feel physically
38%
How long you expect to live
36%
0%
20%
African American / Hispanic (n=133)
23%
23%
37%
28%
33%
28%
30%
60%
80%
30%
38%
31%
31%
0%
20%
% of respondents
Highly or Extremely Distressed
Somewhat Distressed
21%
44%
28%
29%
36% *
35%
100%
22%
33%*
44%
43%*
21%
32%
37%
35%
34%
33%
40%
46%
26%
40%
60%
29%
80%
100%
% of respondents
Not At All or Slightly 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?
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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.
Discussion Topics with Family Since Being Diagnosed with Cancer
% of respondents
100%
80%
Where you would
prefer to spend
your last days
*
45%
20%
0%
*
43%
Fears and
concerns
about dying
29%
*
41%
24%
60%
40%
23%
When life-prolonging
medical care
should be used
36%
34%
34%
*
52%
25 to 44 45 and
Years Old Older
(n=198) (n=307)
*
40%
30%
Beliefs about
preserving life as
long as possible
*
36%
41%
48%
22%
*
48%
29%
*
44%
19%
25%
Who will make
medical decisions
If not able to
39%
Ideas and hopes
about the end of life
*
32%
*
43%
*
47%
22%
27%
25 to 44 45 and
Years Old Older
(n=198) (n=307)
25%
25 to 44 45 and
Years Old Older
(n=198) (n=307)
Have Not Done This
19%
22%
25 to 44 45 and
Years Old Older
(n=198) (n=307)
Did Before Diagnosed
25%
30%
25 to 44 45 and
Years Old Older
(n=198) (n=307)
22%
34%
*
44%
25%
25 to 44 45 and
Years Old Older
(n=198) (n=307)
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:
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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.
Actions Taken by Those Diagnosed with Cancer
Created a medical/health
care power of attorney
Created a
living will
Chose a health
care proxy
Created a last
will and testament
100%
% of respondents
80%
*
37%
22%
32%
60%
27%
36%
*
32%
25%
35%
28%
25%
33%
*
30%
14%
47%
*
33%
35%
40%
20%
*
36%
*
46%
29%
40%*
40%
42%
37%
40%
45 and
Older
(n=307)
25 to 44
Years Old
(n=198)
45 and
Older
(n=307)
25 to 44
Years Old
(n=198)
45 and
Older
(n=307)
0%
25 to 44
Years Old
(n=198)
45 and
Older
(n=307)
25 to 44
Years Old
(n=198)
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.
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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.
Usefulness of Information
% of respondents
25 to 54 Years Old
100%
80%
60%
40%
40%
34%
29%
26%
36%
37%
27%
*
37%
20%
(n=267)
0%
Palliative Care
Living Will
Hospice Care
55 and Older
100%
% of respondents
*
36%
80%
60%
40%
*
48%
46%
32%
22%
*
49%
23%
29%
27%
24%
20%
(n=238)
0%
Palliative Care
Living Will
Not At All or Slightly Helpful
Somewhat Helpful
Hospice Care
Very or Extremely Helpful
*Indicates statistically greater at 90% confidence level
30. How helpful would it be for you to receive additional information about each of the following?
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