Department of Obstetrics and Gynecology, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Department of Dermatology, Sophia Children's Hospital-Center of Pediatric Dermatology; Erasmus MC University Medical Center Rotterdam-Sophia Children's Hospital, Rotterdam, The Netherlands.
Acta Obstet Gynecol Scand. 2023 Nov;102(11):1469-1478. doi: 10.1111/aogs.14668. Epub 2023 Aug 26.
Vulvar lichen sclerosus (VLS) occurs in at least one in 900 girls. There is limited knowledge as to what extent the disease persists in adulthood and what the repercussions in adulthood may be. The aim of this study is to evaluate the long-term consequences of VLS diagnosed in childhood or adolescence.
The population of females histologically diagnosed with VLS in childhood or adolescence in the Netherlands between 1991 and 2015 was identified through the national pathology database. Histological specimens were retrieved and re-evaluated. Potential participants for whom the diagnosis was reconfirmed and who are now adults, were then traced and surveyed. Descriptive statistics were calculated and compared with the literature. Main outcome measures are the demographics of the cohort, their scores on standardized quality of life (QoL) and sexuality questionnaires and answers to additional questions regarding patients' experience with the disease. The questionnaires used were the Dermatology Life Quality Index (DLQI), the Skindex-29, the Female Sexual Function Index (FSFI) and the Female Sexual Distress Scale-Revised (FSDS-R). Secondary outcome measures include obstetric history and histological features found in the original tissue specimens.
A total of 81 women participated, median age 29.0 years, median follow-up from childhood diagnosis 19.5 years. Both QoL and sexuality were somewhat affected in 51.9% of cases. Less than half (45%) reported having regular check-ups. Forty-five (56%) reported symptoms within the past year; of those with symptoms, 14 (31%) were not under surveillance. Cesarean section rate (14.5%) was comparable to the general population, and there were more high-grade obstetric anal sphincter injuries with vaginal deliveries than expected. Sixteen respondents (20%) were not aware of the childhood diagnosis prior to this study.
Symptoms due to VLS are reported by most adults diagnosed as juveniles. QoL and sexuality are affected and correlate to recent symptoms. VLS as a juvenile does not preclude a vaginal delivery. Women diagnosed with VLS in childhood or adolescence are often lost to follow-up.
外阴硬化性苔藓（VLS）在至少 1/900 名女孩中发生。对于疾病在成年期持续存在的程度以及成年期的可能后果，人们的了解有限。本研究旨在评估儿童或青少年期诊断出的 VLS 的长期后果。
通过全国病理数据库，确定了 1991 年至 2015 年间荷兰儿童或青少年期 VLS 组织学诊断的女性人群。检索并重新评估组织学标本。然后追踪并调查那些诊断得到再次确认且现已成年的潜在参与者。计算描述性统计数据并与文献进行比较。主要观察指标为队列的人口统计学特征、他们在标准化生活质量（QoL）和性问卷调查中的得分以及对患者疾病经历的额外问题的回答。使用的问卷是皮肤病生活质量指数（DLQI）、Skindex-29、女性性功能指数（FSFI）和修订后的女性性困扰量表（FSDS-R）。次要观察指标包括原始组织标本中发现的产科史和组织学特征。
共有 81 名女性参与，中位年龄 29.0 岁，从儿童期诊断到随访的中位时间为 19.5 年。51.9%的患者 QoL 和性生活受到一定程度的影响。不到一半（45%）的人定期检查。45 名（56%）报告在过去一年中有症状；有症状的人中，14 名（31%）未处于监测之下。剖宫产率（14.5%）与普通人群相当，阴道分娩时高级别产科肛门括约肌损伤的发生率高于预期。16 名受访者（20%）在本研究之前不知道自己在儿童期的诊断。
大多数被诊断为青少年的成年人报告有 VLS 引起的症状。QoL 和性生活受到影响，并与近期症状相关。青少年时期患有 VLS 并不排除阴道分娩。儿童或青少年期被诊断为 VLS 的女性通常会失去随访。
