Background: Survivorship care plans (SCPs) for posttreatment cancer survivors are recommended by leading health organizations, yet many survivors are not receiving SCPs. This results in suboptimal survivorship care.
Objectives: To understand survivors’ perspectives on how having an SCP would have changed their survivorship experience and to provide insight into the potential of SCPs to meet survivor information needs.
Methods: In LIVESTRONG’s 2014-2015 Surveys of Cancer Survivors, we asked survivors who reported they had not received an SCP to comment on how an SCP might have changed their posttreatment experience. We conducted a qualitative thematic analysis of respondents’ (n = 158) open-ended responses.
Results: Respondents who did not receive an SCP felt they would have benefited from receiving a care plan. Emerging themes suggest that an SCP would have improved emotional experience (n = 54), increased knowledge of what to expect (eg, long-term side effects) (n = 56), or improved their quality of care and their health following treatment completion (n = 20). A subset of respondents (n = 23) indicated they were unsure how an SCP would have changed their experience, if at all.
Discussion: The findings suggest that cancer survivors who did not receive an SCP perceive that receiving this resource would have improved their survivorship experience. The findings also suggest that an SCP would benefit some survivors more than others, depending on the complexity of their disease, their treatment experience, and their posttreatment informational needs.
Conclusion: Findings reflect an opportunity to fill a gap in survivorship care planning and address the information needs of posttreatment cancer survivors.
Currently, more than 15.5 million people in the United States have completed cancer treatment, with more than 20 million anticipated by the year 20261,2 and 26.1 million by 2040.3 Given this potential growth in the number of posttreatment cancer survivors, providing high-quality follow-up healthcare to this group is critical. Posttreatment cancer survivors face complex medical and psychosocial challenges, including management of long-term and late effects, comorbidities, fear and uncertainty surrounding possible recurrence or new cancers, and a multitude of concerns and experiences with implications for posttreatment quality of life.4-8 The Institute of Medicine (IOM) report From Cancer Patient to Cancer Survivor: Lost in Transition recommends that “patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This ‘Survivorship Care Plan’ should be written by the principal provider(s) that coordinated oncology treatment. This service should be reimbursed by third-party payors of health care.”8 The report specifies that survivorship care plans (SCPs) should contain “critical information needed for the survivor’s long-term care,” including:
- Cancer type, treatments received, and their potential consequences
- Specific information about the timing and content of recommended follow-up
- Recommendations regarding preventive practices and how to maintain health and well-being
- Information on legal protections regarding employment and access to health insurance
- The availability of psychosocial services in the community8
In addition, the report recommends that delivery of the SCP be accompanied by discussion to ensure clarity and understanding on the part of the survivor.
The provision of SCPs for posttreatment survivors is recommended by leading health and professional organizations such as the American Cancer Society,9 the Centers for Disease Control and Prevention,10 LIVESTRONG,11,12 the American Society of Clinical Oncology,13 and the American College of Surgeons Commission on Cancer (CoC).14 Further, CoC’s current standards require that by the end of 2018, accredited programs are expected to meet or exceed the delivery of SCPs to 50% of eligible patients.14,15
Despite these recommendations, evidence shows that many survivors are not receiving SCPs16 and that barriers exist preventing broad adoption and implementation of SCPs, which is resulting in less than optimal survivorship care.17 Consequently, there is a need to develop and deliver effective SCPs in a way that meets survivor information needs and enhances posttreatment care and wellness. In this article, we describe the results from a qualitative analysis of survivor-reported perspectives on how receipt of an SCP would have changed their posttreatment experience. The findings provide insight into the potential of SCPs to meet survivors’ informational needs.
In 2015, LIVESTRONG conducted a survey about SCPs to gain a deeper understanding of cancer survivors’ needs and concerns regarding their posttreatment care. This analysis describes survivors’ perspectives on how receipt of an SCP would have altered their posttreatment cancer experience.
In 2014-2015, LIVESTRONG implemented the Surveys of Cancer Survivors, a series of short survey modules that assessed information needs, financial issues, and SCPs. The survey modules were distributed through potential respondent networks, including a panel of cancer survivors and loved ones established in 2014. The SCP module comprised 25 items exploring respondents’ perceptions of and experience with SCPs, including whether they received a plan, the content that was or would have been useful in an SCP, and other information about their posttreatment healthcare information needs and experiences. As a part of the SCP survey module, survivors who reported they had not received an SCP were asked how they felt that an SCP would have changed their posttreatment experience. We conducted a thematic analysis of all open-ended responses to identify emerging themes and patterns among responses to this question.
Initially, 2 qualitative data analysts reviewed a sample of 25% of the responses to develop a draft coding scheme for thematic analysis. Then they independently pilot tested the codes on a sample of the responses and met to refine and finalize the coding scheme. Next, the analysts independently coded 50% of the responses and attained an inter-rater reliability of 0.77 (Cohen’s kappa). After resolving discrepancies, they coded the remaining 50% of the responses and reached an inter-rater reliability of 0.89 (Cohen’s kappa).18
Respondents to the SCP module included 400 individuals; 312 were cancer survivors. Of the survivor respondents, 54.5% (n = 170) reported not receiving an SCP. Of these 170 survivors, 158 responded to the question, “How do you think your cancer experience would have been different if you had received a survivorship care plan?” Many respondents indicated that they would have benefited from receiving an SCP. The characteristics of respondents are presented in Table 1.
Thematic analysis of survivor responses indicates they believe that receiving an SCP would have improved their posttreatment emotional experience (n = 54), increased their knowledge of what to expect (eg, long-term side effects) (n = 56), or improved their quality of care/health following treatment completion (n = 20), as shown in the Figure. Emergent themes and illustrative data are presented in Table 2. Although a majority of the respondents indicated that an SCP would have improved their posttreatment experience, a subset of respondents (n = 23) indicated that they were unsure how an SCP would have changed their experience, if at all.
Improved Knowledge and Emotional Experience
Many respondents indicated that an SCP would have improved their knowledge and/or emotional experience following treatment completion, as shown in the Figure. Specifically, respondents indicated that they thought an SCP would have increased their sense of what to expect (eg, long-term side effects), what actions they could or should take following treatment (eg, when to seek follow-up care), lifestyle changes they could adopt to prevent recurrence and generally improve their sense of emotional well-being, control, and/or confidence in being able to handle their posttreatment experience.
Improved Quality of Care/Health
A subset of respondents (n = 20) indicated that an SCP might have improved the quality of their posttreatment care, eased their burden of coordinating posttreatment care, or improved posttreatment health outcomes by, for example, helping them keep track of and adhering to recommended follow-up care. A small number of respondents (n = 3) speculated that an SCP would have improved their posttreatment communication with healthcare providers.
No or Unspecified Difference
Although most respondents indicated that an SCP would have improved their posttreatment experience, some respondents (n = 23) indicated that they were unsure how or if an SCP would have influenced their experience.
Responses in this analysis indicate that many posttreatment cancer survivors who did not receive an SCP perceived that they would have benefited from receiving a plan. Specifically, survivors expressed that receiving an SCP would have improved their emotional experience, increased their knowledge of what to expect, or improved their quality of care/health following treatment completion. These results are consistent with previous studies indicating that survivors want but do not always receive patient-centered information about how to manage the functional and emotional aspects of cancer posttreatment life and care19; signs and symptoms of recurrence; late and long-term effects; and recommendations for healthy living,20 including a focus on psychosocial, sexual health, mental health, and dietary considerations.21 Also, these results are consistent with the findings from a recent systematic review suggesting that provision of SCPs holds promise for improving proximal outcomes (eg, meeting patient information needs) more than distal health and healthcare delivery outcomes.22
However, evidence indicates that despite progress since the release of the 2016 IOM report, insufficient progress has occurred, and SCPs are often not provided to posttreatment cancer survivors.23 The findings from a nationally representative survey of oncologists and primary care providers about their survivorship care practices found that less than 5% of respondents reported providing a written SCP to their patients.24 The slow progress in implementing SCPs may in part reflect the limited knowledge of how best to tailor the survivorship care planning process based on individual patient’s needs and preferences.
Additionally, our findings indicated that not all survivors require the same level of survivorship care, and some survivors may benefit more than others from receiving an SCP. These preferences may be attributed to the level of complexity of their disease, their treatment experience, and the amount of posttreatment follow-up they wish to have with their care team. Overall, our findings suggest a need and a desire among a majority of posttreatment cancer survivors to receive SCPs, and that they perceive their quality of life and health would be improved by receipt of this resource.
However, these findings should be interpreted cautiously within the context of the study’s limitation. Specifically, our data represent a small convenience sample of mostly white, college-educated respondents.
Regardless, the emergence of strong themes indicating ways in which respondents perceived that an SCP would have improved their posttreatment experience indicates an opportunity for further exploration about patient-informed preferences for SCP content to enhance quality of survivorship. Further research with a broader sample of patients is needed to corroborate these findings.
This study demonstrates that posttreatment cancer survivors who did not receive an SCP perceive that receipt of this resource would have improved their survivorship experience, particularly their emotional well-being and knowledge about follow-up care. The findings suggest an opportunity to fill a gap in the posttreatment cancer survivor experience through effective provision of SCPs developed and delivered in adherence with IOM’s content recommendations. Efforts to support compliance with the IOM recommendations and CoC requirements are needed to ensure that SCPs are routinely and effectively shared with cancer survivors.
- Miller KD, Siegel RL, Lin CC, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66:271-289.
- National Cancer Institute. Cancer Statistics. www.cancer.gov/about-cancer/understanding/statistics. Updated April 27, 2018. Accessed June 29, 2018.
- Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the “silver tsunami”: prevalence trajectories and comorbidity burden among older cancer survivors in the United States. Cancer Epidemiol Biomarkers Prev. 2016;25:1029-1036.
- Mayer DK, Nasso SF, Earp JA. Defining cancer survivors, their needs, and perspectives on survivorship health care in the USA. Lancet Oncol. 2017;18:e11-e18.
- Leach CR, Weaver KE, Aziz NM, et al. The complex health profile of long-term cancer survivors: prevalence and predictors of comorbid conditions. J Cancer Surviv. 2015;9:239-251.
- Koch L, Jansen L, Brenner H, Arndt V. Fear of recurrence and disease progression in long-term (≥5 years) cancer survivors—a systematic review of quantitative studies. Psychooncology. 2013;22:1-11.
- Harrington CB, Hansen JA, Moskowitz M, et al. It’s not over when it’s over: long-term symptoms in cancer survivors—a systematic review. Int J Psychiatry Med. 2010;40:163-181.
- Institute of Medicine, National Research Council. From Cancer Patient to Cancer Survivor: Lost in Transition. Hewitt M, Greenfield S, Stovall E, eds. Washington, DC: The National Academies Press; 2006.
- American Cancer Society. Survivorship Care Plans. www.cancer.org/treatment/survivorship-during-and-after-treatment/survivorship-care-plans.html. Accessed November 22, 2017.
- Centers for Disease Control and Prevention. Cancer Survivorship Care Plans. www.cdc.gov/cancer/survivors/life-after-cancer/survivorship-care-plans.htm. Updated April 19, 2018. Accessed August 6, 2018.
- The LIVESTRONG Foundation. Your Survivorship Care Plan. www.LIVESTRONG.org/we-can-help/healthy-living-after-treatment/your-survivor ship-care-plan. Published 2015. Accessed August 6, 2018.
- Rechis R, Beckjord EB, Arvey SR, et al. The essential elements of survivorship care: a LIVESTRONG brief. www.LIVESTRONG.org/what-we-do/reports/survivorship/the-essential-elements-of-survivorship-care-a-lives trong-brief. Published 2012. Accessed August 6, 2018.
- Institute of Medicine. Implementing Cancer Survivorship Care Planning: Workshop Summary. Washington, DC: The National Academies Press; 2007.
- American Society of Clinical Oncology. Colon cancer adjuvant treatment plan and summary (v3). www.asco.org/ASCOv3/Colon+Can cer+Treatment+Plan+and+Summary. Published 2009. Accessed September 16, 2013.
- American Society of Clinical Oncology. Colon cancer survivorship plan (v3). www.asco.org/ASCOv3/Colon+Cancer+Survivorship+Plan. Published 2009. Accessed September 16, 2013.
- Keesing S, McNamara B, Rosenwax L. Cancer survivors’ experiences of using survivorship care plans: a systematic review of qualitative studies. J Cancer Surviv. 2015;9:260-268.
- Powel LL, Seibert SM. Cancer survivorship, models, and care plans: a status update. Nurs Clin North Am. 2017;52:193-209.
- Freelon D. ReCal OIR: ordinal, interval, and ratio intercoder reliability as a web service. International Journal of Internet Science. 2013;8(1):10-16.
- Boyajian RN, Grose A, Grenon N, et al. Desired elements and timing of cancer survivorship care: one approach may not fit all. J Oncol Pract. 2014;10:e293-e298.
- 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.
- Murphy EA, Majhail NS, Baker KS, et al. Patient and provider preferences: treatment summary and survivorship care plans after hematopoietic cell transplant. J Clin Oncol. 2016;34(suppl). Abstract 63.
- Jacobsen PB, DeRosa AP, Henderson TO, et al. Systematic review of the impact of cancer survivorship care plans on health outcomes and health care delivery. J Clin Oncol. 2018;36:2088-2100.
- Nekhlyudov L, Ganz PA, Arora NK, Rowland JH. Going beyond being lost in transition: a decade of progress in cancer survivorship. J Clin Oncol. 2017;35:1978-1981.
- Blanch-Hartigan D, Forsythe LP, Alfano CM, et al. Provision and discussion of survivorship care plans among cancer survivors: results of a nationally representative survey of oncologists and primary care physicians. J Clin Oncol. 2014;32:1578-1585.