Indiana University School of Medicine, Indianapolis, IN.
Marian University College of Osteopathic Medicine, Indianapolis, IN.
J Low Genit Tract Dis. 2022 Jan 1;26(1):53-59. doi: 10.1097/LGT.0000000000000632.
The purpose of this study was to investigate challenges women face before inflammatory vulvar dermatosis diagnosis to guide interventions for improving time to diagnosis and health care experiences.
The present analysis was part of a larger study exploring sexual health and quality of life of women with vulvar and nonvulvar inflammatory dermatoses, evaluated via a 20-minute web-based survey. One open-response item asked participants to "briefly describe any challenges you faced with regards to health care or health care providers in the time when you were seeking a diagnosis"; this item informed the present study. Eligible participants were women older than 18 years, living in the United States, with diagnosis of an inflammatory vulvar dermatosis persisting at least 1 month. Participants (n = 118) had a mean age of 46.55 ± 15.35 years, and 64% (n = 75) had lichen sclerosus.
Provider-based challenges consisted of insensitive communication and ascribing physical symptoms to mental health issues, self-harm, or other factors. System-based challenges included confusing referral networks, limited specialist access, and widespread lack of provider education. Personal challenges for participants seeking care included feelings of embarrassment and reduced health care efficacy. Challenges led to emotional response and impact for participants, characterized by negative (e.g., distrust in the medical system) or positive (e.g., self-advocacy efforts, strong social media communities) outcomes.
Findings provide unique insights into the challenges women experience before inflammatory vulvar dermatosis diagnosis. This study creates new knowledge exploring the diagnostic journey accompanying inflammatory vulvar dermatoses and contributes practically to clinical and research needs of this understudied population.
本研究旨在探讨女性在炎症性外阴皮肤病诊断前面临的挑战，以指导干预措施，改善诊断时间和医疗体验。
本分析是一项更大规模研究的一部分，该研究探讨了患有外阴和非外阴炎症性皮肤病的女性的性健康和生活质量，通过一项 20 分钟的在线调查进行评估。一个开放式回答项目要求参与者“简要描述您在寻求诊断时在医疗保健或医疗保健提供者方面遇到的任何挑战”；该项目为本次研究提供了信息。符合条件的参与者为年龄在 18 岁以上、居住在美国、患有持续至少 1 个月的炎症性外阴皮肤病的女性。参与者（n=118）的平均年龄为 46.55±15.35 岁，其中 64%（n=75）患有硬化性苔藓。
提供者相关的挑战包括沟通不敏感、将身体症状归因于心理健康问题、自残或其他因素。系统相关的挑战包括混乱的转诊网络、有限的专科医生资源以及广泛缺乏提供者教育。参与者寻求医疗服务时面临的个人挑战包括尴尬感和降低的医疗保健效果。这些挑战给参与者带来了情绪反应和影响，表现为负面（例如，对医疗系统的不信任）或正面（例如，自我倡导努力、强大的社交媒体社区）的结果。
研究结果提供了女性在炎症性外阴皮肤病诊断前所经历的挑战的独特见解。本研究探索了炎症性外阴皮肤病伴随的诊断之旅，为这一研究不足的人群的临床和研究需求提供了新的知识。
