Background: Survivorship care recommendations exist to support a large and growing population of cancer survivors, yet little is known about survivors’ ongoing unmet needs.
Objectives: To understand cancer survivors’ posttreatment health and wellness priorities and preferences.
Methods: The American Cancer Society facilitated a series of 8 focus groups (N = 63 survivors) in 3 states between October 2016 and March 2017. Participants were mostly female (76%) but varied in age, cancer diagnosis, and time since first diagnosis. Semistructured questions guided discussion about survivors’ health and wellness needs and desired support; a ranking exercise prioritized topics affecting survivorship. Survivors’ unmet needs and health priorities were captured in their own words.
Results: Focus group participants articulated unmet information needs, particularly about the late and long-term effects of treatment, as well as resource and support needs for healthy living, ongoing rehabilitation, psychosocial health, returning to work, and dealing with the financial impact of cancer. Healthy living was identified as being most important to ongoing health and wellness among the majority (56%) of group participants.
Discussion: Survivor participants desired ongoing support after treatment for a broad range of issues affecting health and wellness, most notably healthy living. Existing resources could help address many unmet needs among cancer survivors.
Conclusion: Incorporating the “voice of the survivor” into the delivery of survivorship care planning and resources may increase the saliency and reach of existing resources to better address the ongoing and unmet needs of cancer survivors.
The number of individuals living with cancer is increasing. More than 15.5 million Americans are living with a history of cancer, and approximately 65% of those diagnosed are surviving more than 5 years.1 Yet, as longevity for cancer survivors increases, other concerns emerge. Cancer survivors have unique medical and psychosocial needs that can persist or manifest long after treatment completion.2-4 Whereas some effects of cancer or its treatment are transient, others may be permanent; practical challenges such as limitations on work and loss of income may also emerge. According to one systematic review, up to 30% of long-term (≥5 years) cancer survivors report ongoing physical and psychosocial problems associated with cancer.4 Consequently, the long-term health and wellness of cancer survivors is an important topic to be addressed.
Survivors report a variety of unmet needs during and after treatment that may relate to, among other things, physical symptoms or functional limitations, psychosocial or emotional issues, work, or financial strain.5,6
One strategy recommended by the Institute of Medicine and the American College of Surgeons Commission on Cancer (CoC) to help address survivors’ needs is to provide treatment summaries and survivor care plans (SCPs)3—a detailed summary of treatments received and tailored recommendations for follow-up care, including rehabilitation, supportive care services, screening, and health promotion. However, implementation and widespread use of SCPs have been limited, in part due to challenges creating and delivering them,7 as well as limited data on the impact of the SCP process on patient-reported outcomes.8
Resources for cancer survivors are delivered by the medical system managing the cancer treatment, as well as a variety of national and local organizations providing services and information. The medical system managing the SCP determines which resources and information are included in the SCP.
The American Cancer Society (ACS) is a nationwide organization that develops and promotes resources for cancer survivors through its website and other communication channels. In an effort to align program management and provision with the needs of cancer survivors and their caregivers, ACS convened and facilitated a series of focus groups to collect information directly from cancer survivors. The purpose of this paper is to summarize—using survivors’ own words—the most important ongoing posttreatment health and wellness needs of cancer survivors. Better understanding of the posttreatment and long-term needs of survivors could help improve SCP delivery and can be useful for both clinical and lay providers of survivorship programs and services.
This focus group project was designed to collect data directly from cancer survivors to inform how ACS could design and manage programs that are most useful and relevant to survivors and their caregivers.Focus Groups
Between October 2016 and March 2017, ACS staff conducted 8 focus groups in Montana (n = 1), Utah (n = 2), and Washington (n = 5). The Institutional Review Board at the University of Washington deemed this project exempt from review.
Participants were recruited by regional ACS staff members, hospital system partners, and staff at other community organizations that support cancer survivors (eg, Cancer Lifeline) in Montana, Utah, and Washington. Together, ACS staff members and partners worked to identify survivors, send e-mail invitations, determine participant interest and availability, communicate logistical details, and follow up to confirm attendance.
The goal of each focus group was to include 10 to 12 survivors from a variety of backgrounds and cancer diagnoses. No demographic or identifying data were collected from participants to encourage open recruitment and to allow the survivors complete anonymity if they chose. Participants’ responses were tabulated for sex, cancer diagnosis, and number of years since diagnosis. There was a preference for survivors who were 6 months to 3 years posttreatment, but participation was not limited to that range. Previous engagement with the ACS was not a prerequisite for participation. Participation was voluntary. At the end of each focus group, participants received a cookbook as a thank you for their participation.
Focus groups were hosted at a local ACS office or in a hospital or community meeting room. Groups lasted 90 minutes and were facilitated by a single, experienced facilitator (JHM). Semistructured questions guided discussion about survivors’ met and unmet needs during treatment, ongoing health and wellness priorities, desired support, and SCP preferences, where applicable. Each group was recorded with permission from all participants and professionally transcribed (Proof Positive Transcriptions, Garland, TX). Meeting rooms were set up with multiple flip charts and an LCD projector to share the discussion questions and capture open-ended responses in real time.
Participants were asked about resources that were helpful to them during treatment and what resources would have been helpful but were not offered. Then participants were asked, What is most important to you in terms of your ongoing health and wellness now that you have completed your treatment? All answers to this question were written on flip charts, and, where appropriate, grouped into 4 broad categories identified a priori based on prior research,5,9,10 using words and/or phrases provided by participants: (1) maintaining a healthy, active lifestyle; (2) ongoing rehabilitation; (3) psychosocial issues; and (4) problems returning to work. In several groups, issues of financial strain separate from lost income resulting from an inability to return to work were brought up multiple times and resulted in a fifth category (financial issues). Each topic area was revisited to solicit specific ideas about support, resources, or programs that would be most beneficial to cancer survivors dealing with these issues. Responses were solicited in an open-ended fashion to allow for any additional categories that might emerge from each group.
At the end of each focus group, participants completed a ranking exercise to prioritize the issues affecting their posttreatment health and well-being. Participants ranked the topics identified during the group discussion from most (ie, 1) to least important (ie, 4) to their ongoing health and wellness. Two groups ranked 4 categories (healthy living, ongoing rehabilitation, social issues, return to work); the remaining groups ranked 5 categories (healthy living, ongoing rehabilitation, social issues, return to work, financial issues).Analysis
Regional ACS staff observed, took notes, and recorded the results of the ranking exercise for each focus group. Researchers at the University of Washington (Seattle, WA) analyzed the transcribed recordings using thematic analysis to identify key themes; ACS staff summaries of each focus group were used to develop the initial coding scheme.11 Two members of the research team (CM, MF) independently coded each transcribed focus group. The coding structure was revised and finalized after coding the first and second transcripts. Researchers reviewed coded data, identified themes, and discussed and agreed upon findings. The focus group facilitator reviewed and confirmed the key themes identified by the independent coders. Results of the group ranking exercise were tabulated.
In total, 63 cancer survivors participated. Participants were mostly female (76%) but varied in age, cancer diagnosis, and time since first diagnosis (27% within 2 years; 60% within 5 years; 81% within 10 years).
In response to the question, What is most important to you in terms of your ongoing health and wellness now that you have completed your treatment?, participants provided wide-ranging answers that generally matched well to the topic areas determined a priori (healthy living, ongoing rehabilitation, psychosocial issues, problems returning to work). Overall, across these categories, participants clearly identified 2 broad types of needs: (1) information needs, and (2) resource and support needs.
The need for information throughout the survivorship experience was articulated by the majority of participants. In particular, participants desired ongoing information about the late and long-term effects of treatment and complementary and alternative therapies. Many participants expressed a desire to receive this information during active treatment but also recognized that they would likely need it delivered several times given their changing ability to “take in information.” Likewise, across topic areas, participants described needs for resources specific to their kind of cancer, various types of counseling services, ongoing navigation or advocacy, and opportunities to connect with other survivors.
The specific themes that emerged within each topic area are presented below. Selected quotes to frame the issues in the specific words of the survivor participants are included in Table 1. We present the topic areas from first to last ranked by participants according to impact on their current health and well-being. Overall, 56% of participants ranked “healthy living” as being the most important to them. A summary of the complete ranking scores are shown in Table 2.
Participants articulated their perception that a healthy diet and physical activity were under their control and thus were opportunities to be proactive in doing something positive for their health. However, many participants also talked about the challenges to adopting or maintaining a healthy diet and/or physical activity after treatment completion.
Others articulated the need for ongoing and up-to-date information about appropriate diet and exercise and uncertainty about how or where to access this information. This need was often coupled with desired access to providers who are experienced working with cancer survivors, and who could offer specific rather than general advice, appropriately modify activities, understand the survivors’ physical limitations, and help manage expectations.
Survivors also spoke to the need for accessible and low-cost programs and desired opportunities for physical activity with other cancer survivors (yoga, hiking/walking groups) long after treatment completion.Psychosocial Issues
The importance of psychosocial health to posttreatment health and well-being was described by many focus group participants, although the words and phrases they used were varied. Many participants struggled with anxiety and fear, particularly fear of a recurrence. Numerous participants used the term “PTSD” (Post-Traumatic Stress Disorder) to describe their ongoing challenges following cancer treatment.
Both male and female participants discussed “grieving” over changes in their bodies or physical abilities after cancer treatment. This had profound effects on their personal identity. Changes in body image were also interwoven with issues of sexuality and effects on intimate relationships.
Broader changes in relationships (eg, friends, family) was another frequently mentioned issue. Some participants wanted to resume previous activities but described difficulty managing others’ expectations. Survivors wanted to convey that their cancer experience was ongoing, but they struggled in the transition out of treatment when they perceived less support was available.Financial Impact
Although financial issues were sometimes tied to a survivor’s inability to return to work or need to reduce the number of hours they worked, other distinct financial challenges emerged as a key issue in most of the groups, especially among participants who were retired or not working prior to diagnosis.
Services or products that were deemed necessary to support recovery (eg, additional treatments, remission monitoring, naturopathic care, supplements, gym memberships) created ongoing expenses.
Health insurance was another theme discussed frequently in relation to finances. Some participants felt torn between their ability to work and their need for health insurance. Many were fearful about losing coverage provided through the Affordable Care Act. Other participants had difficulty weighing options and determining which plans would be best for cancer survivors and would cover the ongoing care they require.Ongoing Rehabilitation
Focus group participants voiced significant concern over managing ongoing surveillance, recognizing signs of cancer recurrence, and getting care for new and changing late and long-term effects of their treatment.
Several participants expressed concern and surprise that they were experiencing adverse side effects years after cancer treatment and a desire to be able to access emerging knowledge about late and long-term effects that may not have been known or discussed during their treatment. As with healthy living, access to providers with experience working with cancer survivors is seen as important for rehabilitation success.
Finally, participants have a strong desire for more information and resources related to alternative and complementary therapies for managing long-term effects of their treatment, but they don’t always feel confident deciphering what is safe or helpful for them.Return to Work
Some participants felt that returning to work following their cancer treatment contributed to positive self-esteem and a sense of purpose, but others had difficulty coming to terms with new cancer-related limitations or could not return to their previous employment.
Many participants discussed challenges communicating with managers or colleagues about their posttreatment cancer experience and setting realistic expectations. A few participants articulated a fear of losing their job if they missed too much work or were perceived to have too many limitations.
Many working participants wanted a better understanding of their legal protections and employee benefits. Participants who could not return to their previous work discussed the challenges in retraining, finding new work, deciding how/whether to disclose their cancer diagnosis, and explaining interruptions in work history.
When asked to brainstorm specific support, resources, or programs that would benefit cancer survivors dealing with any of the 5 key topic areas summarized above, participants provided wide-ranging ideas that included, among others, peer support and information from other survivors; assistance with cognitive challenges; nutrition advice or counseling; training for employers about cancer treatment impact; and caregiver support. Many responses described existing resources that participants were either unaware of or were not able to recall. Participants also identified some novel resources that, to our knowledge, are not widely available. Suggestions that were articulated more than once are described in Table 3.
The growing population of cancer survivors and expanding treatment options underscore a pressing need to provide more tailored physical and psychosocial care in the years following cancer treatment.1 In our study, we sought the “voice of the survivor” to inform the design and development of programs that are most useful and relevant to cancer survivors and caregivers. The focus group data were also used to provide information about survivor preferences to CoC-accredited cancer centers in Washington for their SCP process. We found that the data could also be relevant to the broader clinical and service provider community.
Decisions made early in treatment can affect quality of life for many years. The need for information throughout the treatment cycle and into long-term survivorship was mentioned frequently within each focus group, suggesting a preference to have information delivered multiple times. The American Society of Clinical Oncology recommends initiating the SCP at diagnosis,12 and this recommendation is supported by various other providers,13 which could facilitate ongoing conversations between survivors and their providers and increase the likelihood that survivors are aware of resources that could benefit them.
The focus group process itself could be useful for cancer centers as a method for engaging survivors and incorporating suggestions from the cancer survivor community in identifying and prioritizing the most relevant resources to include in SCPs. Nurse navigators, social workers, and other clinical providers can outline resources available from their healthcare systems and partner organizations, while survivors can be particularly helpful in evaluating those resources and describing them in the language that would resonate with others.
Navigators and other providers engaged in the survivorship care planning process may find it useful to have a prioritized list of resources and information to be provided over the course of treatment and at completion of treatment, using those resources as the foundation of ongoing dialogue about the impact of treatment and what happens when treatment ends. There are a variety of organizations that have existing resources to address many of the issues suggested by focus group participants.
This study has several limitations, especially as it relates to recommendations for care planning implementation. Survivor participants were not prompted with suggestions about resources or information they may have received during treatment to address issues they mentioned, so it is not known whether they were not offered the resource, or if they simply do not recall the resource or found it irrelevant at the time it was offered. Research on memory recall among cancer patients and the effects of “chemo brain” could be useful in the design of the survivorship care planning process. Providing resources in a particular sequence, using motivational interviewing techniques, building a system for repeating information about resources or support, and testing memory recall to ensure that the patient is understanding and applying the resource could lead to more positive patient outcomes.14 Finally, no demographic data were collected from survivors who participated in the focus group. Thus, while we do not have specific demographic, diagnosis, or treatment information to characterize our study population, information revealed by participants indicates they represented a wide variety of age-groups, socioeconomic backgrounds, and different cancer diagnoses living in both urban and rural settings. This is a strength of this study compared with previous research conducted in survivors of a particular type of cancer or in a single treatment facility.15-17 Finally, survivors who volunteer to participate in focus groups likely differ from the general population of survivor patients in a variety of ways. The degree to which our findings are generalizable to a broader population of survivors in different regions of the country is uncertain. However, many needs that participants articulated are consistent with previously published findings in specific survivor groups.5,10,17-19
Cancer survivors articulated ongoing posttreatment survivorship needs related to a broad range of issues affecting their health and wellness. Many existing resources could help address unmet informational and resource needs expressed by cancer survivors. Efforts to modify the method and/or frequency of information delivery through an ongoing, iterative process of survivorship care planning that starts at diagnosis and incorporates the “voice of the survivor” may help increase the saliency and reach of resources to meet the posttreatment needs of cancer survivors.
This manuscript is a product of the University of Washington Health Promotion Research Center, a CDC Prevention Research Center, and was supported by Cooperative Agreement Number U48-DP001911 from the CDC. The findings and conclusions in this manuscript are those of the author(s) and do not necessarily represent CDC’s official position.
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- Hoekstra RA, Heins MJ, Korevaar JC. Health care needs of cancer survivors in general practice: a systematic review. BMC Fam Pract. 2014;15:94.
- Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2005.
- Foster C, Wright D, Hill H, et al. Psychosocial implications of living 5 years or more following a cancer diagnosis: a systematic review of the research evidence. Eur J Cancer Care (Engl). 2009;18:223-247.
- Burg MA, Adorno G, Lopez ED, et al. Current unmet needs of cancer survivors: analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II. Cancer. 2015;121:623-630.
- Wong AWK, Chang TT, Christopher K, et al. Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words. J Cancer Surviv. 2017;11:751-764.
- Klemanski DL, Browning KK, Kue J. Survivorship care plan preferences of cancer survivors and health care providers: a systematic review and quality appraisal of the evidence. J Cancer Surviv. 2016;10:71-86.
- van de Poll-Franse LV, Nicolaije KA, Ezendam NP. The impact of cancer survivorship care plans on patient and health care provider outcomes: a current perspective. Acta Oncol. 2017;56:134-138.
- Stan D, Loprinzi CL, Ruddy KJ. Breast cancer survivorship issues. Hematol Oncol Clin North Am. 2013;27:805-827, ix.
- Beckjord EB, Reynolds KA, van Londen GJ, et al. Population-level trends in posttreatment cancer survivors’ concerns and associated receipt of care: results from the 2006 and 2010 LIVESTRONG surveys. J Psychosoc Oncol. 2014;32:125-151.
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- American Society of Clinical Oncology. Providing Survivorship Care in Practice. www.asco.org/practice-guidelines/cancer-care-initiatives/prevention-survivorship/survivorship/survivorship-5. Accessed April 6, 2018.
- AONN+ Conference Highlights. The survivorship care plan: more than just a handoff. Journal of Oncology & Navigation Survivorship. 2018;9(2):74.
- Kvale EA, Huang CS, Meneses KM, et al. Patient-centered support in the survivorship care transition: outcomes from the Patient-owned Survivorship Care Plan Intervention. Cancer. 2016;122:3232-3242.
- Matthews H, Semper H. ‘Dropped from the system’: the experiences and challenges of long-term breast cancer survivors. J Adv Nurs. 2017;73:1355-1365.
- Ringash J, Bernstein LJ, Devins G, et al. Head and neck cancer survivorship: learning the needs, meeting the needs. Semin Radiat Oncol. 2018;28:64-74.
- Bernat JK, Wittman DA, Hawley ST, et al. Symptom burden and information needs in prostate cancer survivors: a case for tailored long-term survivorship care. BJU Int. 2016;118:372-378.
- Shay LA, Parsons HM, Vernon SW. Survivorship care planning and unmet information and service needs among adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol. 2017;6:327-332.
- Vivar CG, McQueen A. Informational and emotional needs of long-term survivors of breast cancer. J Adv Nurs. 2005;51:520-528.