Desired elements and timing of cancer survivorship care: one approach may not fit all.

ABSTRACT

INTRODUCTION: Although survivorship care recommendations exist, there is limited evidence about current practices and patient preferences. METHODS: A cross-sectional survey was completed by survivors of lymphoma, head and neck, and gastrointestinal cancers at an academic cancer center. The survey was designed to capture patients' reports of receipt of survivorship care planning and their attitudes, preferences, and perceived needs regarding content and timing of cancer survivorship care information. Elements of survivorship care were based on the Institute of Medicine recommendations, literature review, and clinical experience. RESULTS: Eighty-five survivors completed the survey (response rate, 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. CONCLUSIONS: Our study suggests that cancer survivorship care planning is heterogeneous and may not need to be comprehensive, but rather tailored to individual survivors' needs. Providers must assess patient needs early and continue to revisit them during the cancer care continuum.