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366 Core set of patient-reported outcomes in vulvar cancer a Delphi study among patients, partners and health care providers
  1. Astrid Machielsen1,
  2. Edith Van Esch1,
  3. Dorry Boll1,
  4. Emiel Van Haren1 and
  5. Nicole Ezendam2
  1. 1Catharina hospital, Eindhoven, The Netherlands
  2. 2Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands


Introduction/Background Surgical treatment for vulvar cancer has a major impact on patients’ Health-Related Quality of Life (HRQoL). Patients experience wound complications, a negative body image and problems related to sexuality. Patient-Reported Outcome Measures (PROMs) are becoming increasingly important to monitor patients’ HRQoL. Currently, there is a lack of knowledge about which outcomes are most relevant for patients with vulvar cancer. Moreover, partners are rarely involved, and little is known about their needs. The aim of this study is to develop a PROM for patients with vulvar cancer and their partners that can be used in clinical practice.

Methodology First, a literature search was performed to identify frequently used measurement instruments. Second, interviews were conducted with patients, partners and health care professionals (HCPs) in order to evaluate which concepts are perceived as relevant. The transcripts were thematically analyzed and extracted items were categorized into domains. Third, a Delphi study was performed to reach consensus on the items included in the PROM.

Results In total, 10 patients, 8 partners and 12 HCPs were interviewed and 10 domains were generated. The first Delphi questionnaire including 77 items was completed by 34 patients, 12 partners, and 24 HCPs. Patients consider information provision, physical functioning, body image, and fear of recurrence as important themes. Intimacy was a missing concept during the interviews, but scored lowest by patients and partners in the questionnaire. HCPs consider physical functioning, body image, and intimacy as the most important themes. Information provision was scored as least important by HCPs, but as most important by patients and partners.

Conclusion The preliminary results are heterogeneous and a discrepancy is seen in the importance of intimacy, fear of recurrence, and information provision between HCPs, patients and partners. This emphasizes the need of a PROM in which both patients and partners are included.

Disclosures No conflicts of interest to declare. The final results of the PROM are expected by the end of December 2023.

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