Survey analysis of patient satisfaction and sexual issues in the management of vulvar lichen sclerosus

Abstract Objective Vulvar lichen sclerosus (VLS) is an underestimated chronic disease. It can cause significant symptom burden and sexual dysfunction. This study aimed to evaluate patient satisfaction and current challenges in the management of VLS in a certified dysplasia unit, particularly during the COVID-19 pandemic. Methods This survey analyzed patients who had been diagnosed with VLS and treated at our DKG-certified dysplasia unit. The study was conducted during the COVID-19 pandemic in the Department of Gynecology and Obstetrics at the University of Aachen. The questionnaire contained 43 questions covering general treatment, diagnostic delays, psychological and sexual issues and specific questions about the COVID-19 pandemic. The questionnaire was distributed between January 2021 and September 2023. Results This study included 103 patients diagnosed with VLS who were treated at our certified dysplasia unit. Overall, 48% of the patients were satisfied with the success of the therapy. Most participants reported psychological problems (36.8%), fear of cancer (53.3%), or sexual restrictions (53.3%). Among the patients, 38% were bothered by the regular application of topical cortisone. However, 72% were willing to undergo treatment for more than 24 months. The COVID-19 outbreak in March 2020 had a significant negative impact on general VLS care from the patient’s perspective (3,83/5 before vs. 3,67/5 after; p = 0.046). There was a general request for booklets to inform and educate patients about their disease. Furthermore, the respondents demanded a telephone hotline to answer the questions and wished for follow-up visits via e-mail to cope better with their current situation. Conclusion This study highlights the need for more effective treatments for VLS and an increased awareness of psychological and sexual distress. To ensure patient well-being and satisfaction, it is imperative to offer individualized care in a team of specialists from various disciplines.