(026) “Hoping it Will be Better Next Time:” A Qualitative Analysis of Treatment Decision-making with Vulvodynia
Authors: Cromeens M G , Rowland C , Ogbansiegbe J A , Mihas P , Benhabbour S R , Carey E T 
Published: May 2023

Introduction

Vulvodynia symptoms, experiences, and treatment response vary widely, and understanding of patient experiences and decision-making remain limited. Common diagnostic delays, varying responses to treatment, and the compounding nature of physical symptoms with psychosocial and sexual outcomes complicate patient treatment decisions. Understanding the factors that affect patients’ decision-making can help providers counsel on treatment options and build a therapeutic alliance.

Objective

This study aimed to explore individuals’ experiences with treatments for provoked vulvodynia and factors contributing to their therapeutic decision-making.

Methods

Through a descriptive, qualitative study design, we conducted six focus groups of 3-5 heterosexual, adult (ages 18-51) women with diagnosed provoked vulvodynia, vestibulodynia, or insertional dyspareunia. The semi-structured interviews addressed topics including 1) living with chronic vulvodynia, 2) the impact of vulvodynia on relationships and sexual function, 3) currently available treatment options and limitations of these treatments for vulvodynia, 4) clinical decision making regarding available treatments with providers, and 5) the introduction of a novel drug delivery system for targeted topical treatment to the vulvar vestibule. Participants also completed demographic questionnaires. Semi-structured focus group discussions were audio-recorded, transcribed verbatim, and coded by two independent investigators. Coding differences were resolved and consensus reached. This study analyzed selected codes and subsets of codes related to treatment decision-making, treatments tried, side effects, healthcare access, and the relationship with treating providers. This study was approved by the Institutional Review Board.

Results

Twenty women participated in the focus group discussions. The mean age for the participants was 33.3 years. Most participants were educated with at least some college (93%), White (78.6%), married (75%), and had income greater than $100,000 (50%). When discussing their experiences with treatment decision-making, participants relied on information given by providers and others, but exercised autonomy through independent research. Participants discussed balancing multiple factors including treatment cost, characteristics, impact on relationships and sex, and duration of effect. They also indicated the amount of time they had vulvodynia and the severity of their pain impacted their treatment choices. Most participants reported a history of “trial-and-error” approaches to treatment and shared concerns about possible side-effects. Despite many experiencing weariness and fatigue with their conditions and healthcare systems, they felt driven to persevere by their internal optimism and a desire for symptom relief.

Conclusions

Individuals with vulvodynia weighed a combination of information resources, treatment factors, internal motivations, and obstacles when choosing treatments. Most navigated experiences and decision-making through trial-and-error. Though often facing frustration and fatigue, they voiced hope for future success. Understanding patients’ frustrations with the “trial-and-error” nature of treatment can help providers set expectations and validate patients’ experiences. Addressing patients’ concerns around treatment cost, side-effects, impact on sex, and duration of treatment effects can facilitate individualized treatment planning and therapeutic algorithms for care. Further research into treatment decision-making for patients with vulvodynia would facilitate providers in counseling patients, and the development of targeted treatments indicated for vulvodynia would decrease trial-and-error approaches.

Disclosure

Any of the authors act as a consultant, employee or shareholder of an industry for: Dr. Erin T. Carey and Dr. S. Rahima Benhabbour have submitted a patent application related to this work filed by the University of North Carolina, Office of Technology Commercialization (UNC OTC) (PCT International Application PCT/US20/55816).