1. Survivors' perspectives on cancer: Results from a LIVESTRONG Survey
R. Rechis, E. B. Beckjord, S. Nutt, B. M. Hayes-Lattin
BACKGROUND
Participants in this study were primarily white (90%), represent a Fig. 2 Fig. 3 Recognizing that a cancer diagnosis affects not just the person
Receipt of Care: Percentage of Respondents Receipt of Care: Percentage of Respondents
There are nearly 12 million cancer survivors in the United States, varied range of annual incomes; are well-educated (more than Who Received Care for Practical Concerns.* Who Received Care for Emotional Concerns diagnosed, but loved ones as well, this survey included questions
making the post-treatment physical, emotional, and practical 50% have a college or graduate degree); about half are * Note that the percentage of respondents with school and 100
about survivors’ loved ones’ needs.
concerns – for both those diagnosed with the disease and their employed full-time; and very few reported to be without health employment concerns were calculated using only respondents
who indicated these issues were relevant 90 DID NOT RECEIVE CARE
loved ones – a public health priority. insurance. The LIVESTRONG samples had average ages of 80 RECEIVED CARE Survivors’ loved ones reported that their overall outlook on life
diagnosis that were younger than the average cancer patient 100 70
53
had been both positively and negatively impacted by cancer
METHODS (See Table 1). For most survivors (66%) less than five years had 90 DID NOT RECEIVE CARE 60
39
46 (51%), with an additional 18% reporting their outlook had been
80
passed since their most recent treatment for cancer. 70 36
RECEIVED CARE 50
37
only positively impacted and 19% reporting their outlook had
In 2010, the Lance Armstrong Foundation fielded its second Table 1: Cancer Type, Top Five Most Common in the LIVESTRONG Samples
60
50
40 31 been only or mostly negatively impacted.
LIVESTRONG Survey. The 2010 survey instrument was divided
27
30
40 29 20
LIVESTRONG Survey LIVESTRONG Survey 37 25
into five sections. Type of Cancer Respondents’ Respondents’
30
20
23
15
20 22
17
CONCLUSIONS
Percentages (2010) Percentages (2006) 10 12
10 9 8
11 10 7 6
6 2
0
The first three sections focused on physical, emotional, and More than half of post-treatment cancer survivors in this survey
0
Breast 24 32
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practical concerns encountered by cancer survivors after the end are still reporting problems with fatigue, concentration, fear of
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of cancer treatment. recurrence, grief and identity issues, and emotional distress.
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More than 40 percent reported problems with sexual dysfunction
Prostate 7 5
Post-treatment cancer survivors included individuals who had and dissatisfaction, concerns about their family members’ risk
been diagnosed with cancer who were currently finished with Lymphoma, non-Hodgkin 6 6 “It is sometimes difficult for those who have not had cancer to understand what a cancer
survivor is going through. The fear of recurrence is illogical to them, but totally logical to the
for cancer, and personal appearance. Post-treatment survivors
treatment or who were managing cancer as a chronic condition. Total 51 55 survivor.” - Survey respondent identify these issues as causing functional impairment in their
The sections of the survey intended for post-treatment cancer day-to-day lives; yet, despite this impairment, many with
survivors included questions about: 1) physical concerns, 2) “Very little help was given to me for the emotional problems of cancer. Any help I have
physical, emotional, or practical concerns remain unaddressed,
emotional concerns, and 3) practical concerns. There were a received has been largely as a result of my own efforts.” - Survey respondent When asked why respondents had not received care, the majority most commonly because they have “have learned to live with it.”
total of 28 collections addressing a broad range of concerns reported that it was because they learned to live with the Further, the cancer diagnosis is affecting individuals beyond just
such as heart problems, insurance issues and spirituality. Overall, the vast majority of PTCS experienced physical, concern (See Table 2). those diagnosed in both positive and negative ways.
emotional and/or practical concerns as a result of having cancer.
The two remaining sections included questions for both However, in many cases, they did not receive care for those Table 2: Reasons for Not Receiving Care
Opportunities to address the results found here are:
post-treatment survivors and others affected by cancer, including needs. Figures 1-3 include information about the percentage of
Type of Concern Reason for Not Receiving Care Percent Selected » Connect people to the resources they need throughout the cancer continuum,
family members, loved ones, and individuals currently people who received care for the concerns that they experienced
including the post-treatment phase of survivorship
undergoing cancer treatment. after the completion of treatment. Learned to live with it 55
100 Fig. 1 Were told it was a side effect 37 » Identify and disseminate the essential elements of survivorship care delivery
Individuals were asked to participate in this survey through a
Receipt of Care: Percentage of Respondents Who Received Care for Physical Concerns
Physical Concern Addressed it on their own 20 that can help to ensure cancer survivors’ needs are met
90
number of means (including partnerships with national cancer 80
Were told nothing could be done 19
» Conduct continued surveillance on the concerns of cancer survivors and
Expect to get care in the future 14
organizations such as Cancer.net and the LIVESTRONG 70
disseminate research to better understand the experience of post-treatment
Survivorship Center of Excellence Network). DID NOT RECEIVE CARE
Learned to live with it 59 cancer survivorship
60
RECEIVED CARE
Addressed it on their own 41
50 44 31 Emotional Concern Didn't want to receive care 19
RESULTS 40 30 For reasons they didn't know 16 Data from this large-scale survey enables the voice of people
25
Was told it was a side effect 16 affected by cancer to play a role in guiding programs and
30
Between June 2010 and February 2011, more than 15,000 11
Learned to live with it 23 policies to meet the needs of this large and growing population.
20 14
individuals affected by cancer responded to the survey. The
22 8
19
5 Addressed it on their own 18
15 7 1
results here include findings for 3,129 PTCS who completed a 10
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6 2 Practical Concern Were unsure where to go 14 “The complexity of the financial roller-coaster cannot be overemphasized, and the amount
8 7 8
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3 7
Tried but were unsuccessful 13 of energy required to connect with those resources is overwhelming. We need more support
minimum of 75% of the items reflecting post-treatment 0
Didn't know help was available 12
in this area!” - Survey respondent
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