# Research priorities in vulvodynia: A modified Delphi study

## TL;DR

This study identifies top research priorities for vulvodynia, focusing on improving care pathways, clinician education, and multidisciplinary support to better address this chronic pain condition.

## Contribution

The study uses a participatory Delphi method to establish consensus-based research priorities involving patients, clinicians, and researchers.

## Key findings

- Top priority is creating person-centered care pathways and improving clinician education and training.
- Development of multidisciplinary pain teams is a key research priority.
- Accessible patient resources on treatment and self-care are highlighted as important.

## Abstract

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.

To establish research priorities that address critical knowledge deficits and improve outcomes for individuals affected by vulvodynia.

A mixed-methods participatory study using a modified electronic Delphi (e-Delphi) approach combined with focus groups.

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.

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.

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.

What should researchers study next? Identifying the most important research questions about vulvodynia

Vulvodynia is a painful and often misunderstood condition that affects the vulva. People with vulvodynia often struggle to get a diagnosis, face limited and inconsistent treatment options, and experience stigma and dismissal from healthcare providers. Research on vulvodynia has increased, but it is unclear whether the most important issues for patients and clinicians are being addressed. To identify what research is most needed, we conducted a Delphi study, an expert-driven process that gathers opinions across multiple rounds to reach consensus on key priorities. We invited patients, healthcare providers, and researchers to participate in a three-stage online survey. Participants first generated a list of research topics they believed were most important. They then rated and ranked these topics, leading to a final list of the top 10 research priorities for vulvodynia. The top three research priorities identified were:

1. Creating a person-centered care pathway and improving clinician awareness, education, and training.

2. Developing multidisciplinary pain teams that include gynecologists, physiotherapists, and mental health professionals.

3. Providing accessible patient resources on treatment options and self-care strategies.

Other important research topics included understanding the causes of vulvodynia, mental health support, diagnostic tools, and ways to raise public awareness. Key Takeaway: Patients and clinicians agree that better education for healthcare providers, improved care pathways, and multidisciplinary support are top priorities for vulvodynia research. These findings provide a roadmap for future research, helping guide funding, policy decisions, and healthcare improvements.