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“Congratulations, you are cancer free!” Hearing these words from the oncologist must come as an overwhelming relief to patients, as surviving a cancer diagnosis is one of the hardest things a person can do over their lifetime. Yet, beating cancer changes a person profoundly, and for many, the end of treatment is just the beginning to a life-long journey of healing. Cancer survivors experience feelings of survivor guilt and fear of recurrence and and can sometimes struggle to live life normally. To understand how providers can help cancer survivors rebuild their lives after treatment, a growing body of work has focused on developing health services interventions that ease the transition from cancer patient to cancer survivor.
Managing the long-term and short-term needs of cancer survivors has traditionally fallen to oncologists. However, even as the workforce is projected to face a burgeoning shortage of oncologists, more women are surviving this disease than ever as a result of advances in breast cancer treatment and care. To address this critical need for survivorship care, the National Academy of Medicine first proposed in 2006 that patients with cancer receive an individualized survivorship care plan (SCP). The SCP is composed of two elements: a record of treatments and care received, and a comprehensive plan outlining future clinical needs, health-promoting strategies, contact information for the care team and other resources. The use of an SCP would facilitate the transfer of survivorship care from the oncologist to the primary care provider.
To test if using SCPs provided concrete benefits such as a better quality of life or lower cancer-related distress to breast cancer survivors, scientists performed a randomized trial in 2011.(Grunfeld et al., 2011) . Survivors of early-stage breast cancer were allocated into two groups. In the first group, patients received a standard discharge visit from the oncologist before their routine follow-up treatment was transferred to their primary care physician. In the second group, patients received an SCP and a 30-minute educational session with a nurse reviewing the contents of the SCP in addition to this standard discharge visit. Further, primary care providers attending survivors in this second group also received their patients’ SCP. Patient in both groups were then transitioned from the oncologist to the primary care physician for follow-up care.
Patient-reported outcomes (PROs) were evaluated at the end of 12 months. As defined by the FDA, PROs are “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else”. PROs are vital for understanding the thoughts, comfort-level and complaints that patients have regarding medical technologies and interventions, and have become critical in evaluating new technologies. The PROs used in this study included cancer-related distress, quality of life and patient satisfaction with their medical care. Patient reported their outcomes using questionnaires designed for this purpose. The study’s results showed that contrary to prevailing wisdom, the use of SCPs did not improve the quality of life of survivors compared to survivors who received the standard treatment. A follow-up study with extended results for 24 months was published in 2015 confirming the same results (Boekhout et al., 2015).
While the SCPs implemented in the study did not indicate an improvement in the patient-reported outcomes of survivors, there is still plenty of room to optimize the design and delivery of these plans and improve the quality of care. The American Society for Clinical Oncology noted in its 2016 Breast Cancer Survivorship guideline that in addition to testing for the standard physical after-effects, cancer survivors should also be tested for psychosocial effects such as depression, anxiety, fear of pain and/or dying and worries about recurrence. Breast cancer survivors also experience challenges with body image and considerable difficulties in returning to work, navigating their relationships and social lives and maintaining financial health. SCPs that integrate care for these psychosocial effects would require a multidisciplinary team of oncologists, primary care providers, counselors and palliative care specialists. Another area for continuing research is the development of SCPs that are responsive to the cultural variations among groups such as African-American, South Asian and Latino patients. Survivorship care needs to be tailored to underserved populations, and ethnic and linguistic minorities in the US, to help them navigate their unique challenges post-cancer treatment.
A number of leading cancer hospitals and institutions have embraced the use of SCPs, despite the results of the randomized control trial. By addressing barriers in implementation, increasing their relevance for targeted populations, and improving patient-engagement in their design and delivery, SCPs present a powerful opportunity for delivering quality survivorship care to those who have overcome cancer.
- Boekhout, A. H., Maunsell, E., Pond, G. R., Julian, J. A., Coyle, D., Levine, M. N., … FUPII Trial Investigators. (2015). A survivorship care plan for breast cancer survivors: extended results of a randomized clinical trial. Journal of Cancer Survivorship : Research and Practice, 9(4), 683–691. doi:10.1007/s11764-015-0443-1
- Grunfeld, E., Julian, J. A., Pond, G., Maunsell, E., Coyle, D., Folkes, A., … Levine, M. N. (2011). Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. Journal of Clinical Oncology, 29(36), 4755–4762. doi:10.1200/JCO.2011.36.8373