Research priorities in vulvodynia: A modified Delphi study

Abstract

Background: Vulvodynia is a chronic, unexplained pain in and around the vulva, likely involving an interplay of biological and psychosocial factors. Women with vulvodynia often experience delayed diagnoses, ineffective treatments, and significant quality of life impacts, compounded by social stigma and negative healthcare experiences. Despite its prevalence, our understanding of vulvodynia and its impacts remains limited. Objectives: To establish research priorities that address critical knowledge deficits and improve outcomes for individuals affected by vulvodynia. Design: A mixed-methods participatory study using a modified electronic Delphi (e-Delphi) approach combined with focus groups. Methods: A three-phase modified e-Delphi process was combined with focus groups to gather insights from patients, clinicians, and researchers with expertise in vulvodynia. In Phase 1, participants generated research topics through surveys and focus group discussions. In Phase 2, these topics were rated and ranked by participants to generate a preliminary “top 10” list of priorities. In Phase 3, participants re-rated and re-ranked the preliminary list to achieve consensus on the final research priorities. Results: The top three priorities identified were: (1) Creating a person-centred care pathway and increasing awareness, education, and training of clinicians on vulvodynia, (2) Development of multidisciplinary pain teams, and (3) Creating accessible information for patients on treatment options and self-care advice. Conclusion: This study highlights the importance of integrating the perspectives of those with lived experience, healthcare professionals, and researchers to identify research priorities with the greatest potential for impact. Findings provide a roadmap for future vulvodynia research, support efficient resource allocation, and inform policy development. Furthermore, these results provide a foundation for grassroots initiatives to improve awareness, education, and care for individuals affected by vulvodynia.