Netherlands Comprehensive Cancer Organisation (IKNL), Eindhoven, Netherlands
Belle Hadewijch de Rooij , Teresa Hagan , Kathryn E. Post , Jane M. Flanagan , Jeffrey M. Peppercorn , Don S. Dizon
Background: More than a decade after the widespread recommendation of survivorship care plans (SCPs), evidence-based content and processes for providing survivorship care planning in gynecologic oncology remain undefined. This qualitative study sought to characterize the challenges experienced in care after treatment of gynecological cancer and preferences for survivorship care planning among patients, their caregivers and health care providers. Methods: Between July and August 2017, in-depth semi-structured interviews were conducted at a large academic hospital in the United States among patients that recently ended treatment ( < 12 months) of a gynecological cancer (ovarian, endometrial, cervical and vulvar), their caregivers, and 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). The vast majority of patients and caregivers (91%) expressed satisfaction for survivorship care, although all reported that remaining needs and ongoing issues remained unaddressed (i.e. distressing symptoms and mood). Almost all (95%) reported a desire for more information on how to address these needs, including issues related to side effects (59%), follow-up planning (32%), and psychological assistance (23%). Preferences for survivorship care planning differed across individuals, with respect to content, timing, and mode of delivery. Some patients did not want a SCP at all (14%). Health care providers expressed that they 1) experience challenges in communicating with patients about survivorship, 2) want to shift the focus to improving quality of life as opposed to focusing on likely disease recurrence, 3) do not currently provide formal SCPs, 4) want disease specific and tailored SCPs to support their survivorship care. Conclusions: Patients, caregivers and health care providers express a need for resources to support survivorship care in gynecologic oncology. The variation of disease types and patient and caregiver needs in this field requires multi-faceted, tailored survivorship care planning.
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