Researchers at Dana-Farber Cancer Institute noted that a number of survivorship care recommendations and templates for care plans exist but little is known about patients’ preferences in survivorship care planning. The researchers developed a survey to capture patients' reports of receipt of survivorship care planning and their attitudes, preferences, and perceived needs about the content and timing of cancer survivorship care information. Elements of survivorship care were based on the Institute of Medicine’s recommendations, literature review, and clinical experience. The cross-sectional survey was completed by 85 survivors of lymphoma, head and neck, and gastrointestinal cancers (response rate was 81%).
More than 75% reported receiving a follow-up plan or appointment schedule, a monitoring plan for scans and blood tests, information about short- and long-term adverse effects, and a detailed treatment summary. These elements were reported as desired by more than 90% of responders. Approximately 40% of these elements were only verbally provided. Although more than 70% described not receiving information about employment, smoking cessation, sexual health, genetic counseling, fertility, or financial resources, these elements were not reported as desired. However, “strategies to cope with the fear of recurrence” was most often omitted, yet desired by most respondents. Survivors' preferences regarding optimal timing for information varied depending on the element. The findings suggest that cancer survivorship care planning is heterogeneous and may not need to be comprehensive, but rather tailored to individual survivors' needs.
Boyajian RN et al. Desired Elements and Timing of Cancer Survivorship Care: One Approach May Not Fit All. Journal of Oncology Practice. Published online before print June 24, 2014, doi: 10.1200/JOP.2013.001192