Abstract
63 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.
Highlights
Each year, almost 106,000 women in the USA are diagnosed with a gynecological cancer [1]
The aim of the current study is to describe the (1) challenges following treatment and (2) the preferences regarding survivorship care among patients treated for gynecological cancer, their caregivers, and health care providers (HCPs)
This study employed an open-ended qualitative descriptive design including in-depth semi-structured interviews among three stakeholder groups: patients with a gynecological cancer, their caregivers, and gynecologic oncology HCPs with whom we conducted a focus group
Summary
Almost 106,000 women in the USA are diagnosed with a gynecological cancer [1]. The estimated 5-year survival rates vary widely from 46% for women with ovarian cancer to over 80% for women with endometrial or vulvar malignancies [1]. Survival rates for gynecological cancers have slightly increased during the past decades, reflecting advances in treatment that help patients survive their disease [1]. Regardless of prognosis, a wide body of literature supports the notion that women treated for gynecological cancer experience a significant level of disease- and treatment-related symptoms that persist after the end of first-line treatment and greatly impact their long-term quality of life [2,3,4,5,6,7]. One of the most significant and overwhelming psychological concerns cancer survivors struggle to manage is the fear of cancer recurrence, which is associated with increased symptom burden, overwhelming anxiety, post-traumatic stress, and hopelessness [4, 6, 8,9,10]
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