Experiences of Care and Gaslighting in Patients With Vulvovaginal Disorders.

IMPORTANCE

Medical gaslighting, in which a patient's concerns are dismissed without proper evaluation, has been described anecdotally in vulvovaginal patient care, but has not been quantified.

OBJECTIVE

To use a patient-centered instrument to measure adverse experiences in vulvovaginal care.

DESIGN, SETTING, AND PARTICIPANTS: Common themes from National Vulvodynia Association patient testimonials were used to design a mixed-methods measure of patient experience that included both quantitative and qualitative questions. An instrument was created and submitted to officers from the National Vulvodynia Association and Tight-Lipped, another patient advocacy organization, for feedback. The measure was then completed by patients before their first appointment at a vulvovaginal disorder referral clinic from August 2023 to February 2024.

EXPOSURE

Participation in the survey.

MAIN OUTCOMES AND MEASURES

The primary outcome was the incidence of reported clinician behavior and consequent distress as reported on the survey instrument. Quantitative data were analyzed using simple descriptive statistics (mean [SD], median [IQR], and percentage). Narrative responses provided by patients were analyzed using the clinical-qualitative method for content analysis.

RESULTS

A total of 520 patients completed surveys; 5 were eliminated because the patient was younger than 18 years, 6 were eliminated for duplication, 6 were eliminated because they had no past clinician, and 56 were eliminated for completely blank responses. Thus, surveys of 447 patients (mean [SD] age, 41.7 [15.2] years) were analyzed (86% response rate). Patients had a mean (SD) of 5.50 (4.53) past clinicians. Patients reported that a mean (SD) of 43.5% (33.9%) of past practitioners were supportive, 26.6% (31.7%) were belittling, and 20.5% (30.9%) did not believe the patient. In total, 186 patients (41.6%) were told they just needed to relax more, 92 (20.6%) were recommended to drink alcohol, 236 (52.8%) considered ceasing care because their concerns were not addressed, 92 (20.6%) were referred to psychiatry without medical treatment, 72 (16.8%) felt unsafe during a medical encounter, and 176 (39.4%) said they were made to feel crazy, the most distressing surveyed behavior (rated at a mean [SD] of 7.39 [3.06] of 10 on a numerical rating scale of distress). A total of 1150 quotations were analyzed qualitatively; common themes included lack of clinician knowledge (247 quotations) and dismissive behaviors (211 quotations).

CONCLUSIONS AND RELEVANCE

In this cross-sectional study, a patient-centered measure of adverse experiences in vulvovaginal care was developed. Participants reported common past experiences with gaslighting and substantial distress; they frequently considered ceasing care. There is an urgent need for education supporting a biopsychosocial, trauma-informed approach to vulvovaginal pain and continued development of validated instruments to quantify patient experiences.