Patient reported outcome measures among patients with vulvar cancer at various stages of treatment, recurrence, and survivorship

Our goal was to pragmatically describe patient reported outcomes (PROs) in a typical clinic population of vulvar cancer patients, as prior studies of vulvar cancer PROs have examined clinical trial participants. A prospective PRO program was implemented in the Gynecologic Oncology clinic of a tertiary academic institution in January 2018. Vulvar cancer patients through September 2019 were administered the European Organization for the Research and Treatment of Cancer Quality of life Questionnaire, the Patient Reported Outcome Measurement Information System Instrumental and Emotional Support Scales, and the Functional Assessment of Cancer Therapy-Vulvar questionnaire. Binary logistic regressions were performed to determine adjusted odds ratios for adverse responses to individual questions by insurance, stage, age, time since diagnosis, recurrence, radiation, and surgical radicality. Seventy vulvar cancer patients responded to PROs (85.4% response rate). Seventy-one percent were > 1 year since diagnosis, 61.4% had stage I disease, and 28.6% recurred. Publicly insured women had less support and worse quality of life (QOL, aOR 4.15, 95% CI 1.00–17.32, p = 0.05). Women who recurred noted more interference with social activities (aOR 4.45, 95% CI 1.28–15.41, p = 0.019) and poorer QOL (aOR 5.22 95% CI 1.51–18.10, p = 0.009). There were no major differences by surgical radicality. Those >1 year since diagnosis experienced less worry (aOR 0.17, 95% CI 0.04–0.63, p = 0.008). Surgical radicality does not affect symptoms or QOL in vulvar cancer patients, whereas insurance, recurrence, and time since diagnosis do. This data can improve counseling and awareness of patient characteristics that would benefit from social services referral. •In a typical clinic population of vulvar cancer patients, quality of life is lower compared to clinical trial populations.•Vulvar cancer patients with public insurance have less emotional and instrumental support and worse quality of life.•Vulvar cancer recurrence is a major predictor of poor quality of life, while radicality of surgery is not.•Oncologists should perform an appropriately radical surgery to prevent recurrence, as this may benefit quality of life.