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 on general treatment, diagnostic delays, disease education, psychologic and sexual issues, and specific questions regarding the COVID-19 pandemic. The questionnaires were 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 psychologic 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 the 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 psychologic and sexual distress. To ensure patient well-being and satisfaction, it is imperative to offer individualized care with adequate disease education in a team of specialists from various disciplines.

中文翻译：

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外阴硬化性苔藓治疗中的患者满意度和性问题：单中心认证的不典型增生单位调查分析

客观的

外阴硬化性苔藓（VLS）是一种被低估的慢性疾病。它会导致严重的症状负担和性功能障碍。本研究旨在评估经过认证的不典型增生科室的患者满意度和当前 VLS 管理面临的挑战，特别是在 COVID-19 大流行期间。

方法

这项调查分析了被诊断患有 VLS 并在我们 DKG 认证的发育不良科室接受治疗的患者。该研究是在 COVID-19 大流行期间在亚琛大学妇产科进行的。调查问卷包含 43 个问题，涉及一般治疗、诊断延误、疾病教育、心理和性问题，以及有关 COVID-19 大流行的具体问题。调查问卷于2021年1月至2023年9月期间分发。

结果

这项研究包括 103 名被诊断患有 VLS 的患者，他们在我们经过认证的发育不良科室接受治疗。总体而言，48% 的患者对治疗的成功感到满意。大多数参与者报告了心理问题（36.8%）、对癌症的恐惧（53.3%）或性限制（53.3%）。在患者中，38% 的人因定期使用外用可的松而感到困扰。然而，72% 的人愿意接受超过 24 个月的治疗。从患者的角度来看，2020 年 3 月的 COVID-19 爆发对一般 VLS 护理产生了显着的负面影响（之前为 3.83/5，之后为 3.67/5；p  = 0.046）。人们普遍要求提供小册子来向患者通报和教育他们的疾病。此外，受访者还要求电话热线解答问题，并希望通过电子邮件进行跟进，以更好地应对目前的情况。

结论

这项研究强调需要对 VLS 进行更有效的治疗，并提高对心理和性困扰的认识。为了确保患者的健康和满意度，必须在来自不同学科的专家团队中提供个性化护理和充分的疾病教育。