What Do Patients Want? A Needs Assessment of Vulvodynia Patients Attending a Vulvar Diseases Clinic

Abstract

IntroductionVulvodynia is a chronic pain disorder that negatively impacts the quality of life of affected women.AimThe goal of this study was to identify unmet needs among localized provoked vulvodynia patients.MethodsA qualitative needs assessment was performed in a subspecialized vulvar clinic in a single academic institution in Canada. Semistructured interviews were conducted, recorded, and analyzed using the constant comparative method of grounded theory to identify common themes.Main Outcome MeasuresInterviews were conducted until theme saturation was achieved.ResultsA diverse sample of 8 patients completed all components of the study. The most prominent unmet needs raised by patients in their interviews were categorized into 3 main themes: (1) challenges related to obtaining a diagnosis of vulvodynia and finding practitioners who are knowledgeable about vulvodynia; (2) challenges related to the current impact of the disease physically, emotionally, and in social relationships with patients' intimate partners; and (3) barriers to adherence with recommended therapy. Solutions recommended by patients include better education of physicians regarding vulvodynia and the development of multidisciplinary programs that provide access to physiotherapy, sex therapy, mindfulness and psychology services on-site, information classes for new patients, and the creation of peer support networks for patients and their partners.ConclusionA patient-focused needs assessment suggests optimal vulvodynia care requires better education of physicians and a multimodal approach to therapy, ideally with multiple services offered in 1 location.

Vulvodynia Viewed From a Disease Prevention Framework: Insights From Patient Perspectives

“…Research shows that sufferers see an average of 5 physicians before receiving a diagnosis, 31 leading many to report feeling judged, dismissed, or disbelieved by HCPs. 9 , 10 , 32 , 33 , 34 , 35 This contributes to patients' self-doubt, frustration, despair, wavering confidence in the medical system, and their need to become advocates for their own care. 9 , 10 , 36 , 37 Particularly in regards to health concerns that predominantly affect ciswomen, some suggest that misogynistic ideology encourages HCPs to evaluate certain patients as hysterical, neurotic, or uptight 37 and to provide unhelpful advice.…”

“… 2 , 7 Much research indicates that healthcare providers (HCPs) often lack training on the condition, and health systems fail to provide adequate resources. 8 , 9 Not surprisingly, people suffering from vulvodynia often feel discouraged, their pain ignored or depreciated by HCPs. 8 …”

“…Studies conducted in Toronto and Vancouver and focused on patient experiences in the healthcare setting demonstrate the positive outcomes of multidisciplinary teams. 9 , 10 However, these 2 densely populated urban centers contrast dramatically with the rural geography of Newfoundland and Labrador (NL) ‡ . 11 The results of these studies do not expose the known challenges of accessing health care in rural or small urban settings, and their results cannot be generalized to all of Canada owing to rural/urban resource disparities.…”

Efficacy of Internet-Based Guided Treatment for Genito-Pelvic Pain/Penetration Disorder: Rationale, Treatment Protocol, and Design of a Randomized Controlled Trial

“…Moreover, the availability of such specialized treatment options in health care is extremely limited ( 46 , 47 ). Thus, the majority of women with GPPPD do not receive appropriate treatment, which is, alongside the burden for the individual and partner, also associated with economic consequences, such as increased direct health costs including office visits, hospitalization, and medication ( 48 ).…”

Vulvodinia: una puesta al día

“…Actualmente, no existe un consenso que permita a los médicos especialistas abordar la vulvodinia de manera integral, pero se recomienda realizar una buena historia clínica, revisar los antecedentes sexuales, efectuar un cuidadoso examen físico, iniciar el tratamiento y realizar el seguimiento de la paciente para evaluar la respuesta al tratamiento (2) . Asimismo, existe poca literatura que describa otras necesidades de las pacientes con diagnóstico de vulvodinia que no estén siendo abordadas mediante intervenciones multidisciplinarias (7) . En el Perú no se han realizado estudios que permitan determinar su prevalencia e implicancias médicas, solo ha sido abordada de manera muy puntual durante el desarrollo de sesiones científicas de las diversas sociedades de la especialidad.…”