Survivorship care planning in gynecologic oncology—perspectives from patients, caregivers, and health care providers

PURPOSE: This qualitative study sought to describe the challenges following treatment and the preferences regarding survivorship care among patients treated for gynecological cancer, their caregivers, and health care providers. METHODS: Between July and August 2017, in-depth semi-structured interviews regarding survivorship were conducted at a large academic hospital in the USA among patients who recently completed treatment (< 12 months) for a gynecological cancer (ovarian, endometrial, cervical, and vulvar) and their primary caregivers. A focus group was conducted among health care providers (oncologists, nurses, and fellows). Main themes were identified using descriptive content analysis. RESULTS: A total of 30 individuals participated in this study (13 patients, 9 caregivers, 8 health care providers). Almost all participants reported a desire for more information on how to address survivorship needs, specifically as they related to side effects, follow-up schedule, and psychological assistance. Despite this uniformly identified need for more information, preferences for survivorship care planning differed across cancer types and individuals, with respect to content, timing, and mode of delivery. Health care providers expressed challenges in communicating with patients about survivorship, a desire to shift post-treatment conversations to the goal of improving quality of life as opposed to focusing on disease recurrence, and an unmet need for disease specific and individualized survivorship care planning. CONCLUSIONS: Patients, caregivers, and health care providers each expressed a need for gynecologic cancer-tailored survivorship care resources. IMPLICATIONS FOR CANCER SURVIVORS: The variation of disease types and patient and caregiver needs may require multi-faceted, individualized survivorship care planning. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11764-018-0713-9) contains supplementary material, which is available to authorized users.