Survivorship Care Planning in Gynecologic Oncology-Perspectives From Patients, Caregivers, and Health Care Providers

Survivors of gynecological cancer experience a significant level of disease- and treatment-related symptoms after the end of first-line treatment that persist and greatly impact their long-term quality of life. Fear of cancer recurrence is a significant and overwhelming psychological concern among women who survive. This fear is associated with increased symptom burden, high anxiety, posttraumatic stress, and hopelessness. In 2006, the National Academy of Medicine recommended that all cancer survivors receive a Survivorship Care Plan (SCP). A typical SCP contains written information on diagnosis and documents all treatments, short-and long-term treatment effects, and recommendations for follow-up care. However, several randomized controlled trials have not demonstrated beneficial effects of SCPs on short-or long-term patient satisfaction with information provided and care, quality of life, or distress. Without further refinement and evaluation of the interventions proposed by the National Academy of Medicine, patients with gynecological cancer may not receive the intended benefits of an SCP. The aim of this qualitative study was to describe the challenges following treatment for gynecological cancer and the perspectives and preferences regarding survivorship care among patients treated for gynecological cancer, their caregivers, and health care providers. The study was conducted at a large academic hospital in the United States between July and August 2017. In-depth semistructured interviews regarding survivorship were conducted among patients who had recently completed treatment (within 12 months) for a gynecological cancer (ovarian, endometrial, cervical, and vulvar) and their primary caregivers. Interviews with patients and caregivers were conducted by telephone or in-person. Health care providers (oncologists, nurses, and fellows) provided their perspectives in a focus group. A comprehensive list of categories was summarized and the topics classified into higher-order themes. Descriptive content analysis was used to identify main themes. Thirty individuals participated in the study: 8 health care providers, 13 patients, and 9 caregivers. Although most patients and caregivers were satisfied with the informational resources they had received from their health care providers, almost all reported a desire for more information on how to address survivorship needs-specifically for adverse effects, follow-up schedule, and psychological distress. Preferences of patients and caregivers for additional information on survivorship care largely differed across cancer types and individuals with respect to content, timing, and mode of delivery. Survivorship care issues important to health care providers included difficulties in communicating with patients about survivorship and a desire to shift posttreatment conversations from focusing on disease recurrence to the goal of improving quality of life. Health care providers also endorsed the unmet need for disease-specific tailored survivorship care planning. Each group of stakeholders (patients, caregivers, and health care providers) expressed the need for disease-specific tailored survivorship care plans. Because of variation of disease types in gynecologic cancer as well as patient and caregiver needs, multifaceted, individualized survivorship care planning may be required.