What is the diagnostic process experience of patients with genital Lichen? An Italian Survey

Introduction: Genital Lichen Sclerosus (GLS) is a chronic inflammatory disease due to autoimmune events that occurs in anogenital region. It seems to affect mostly women but both the etiology and the prevalence of the disease are largely unknown. The aim of this cross-sectional study was to examine the real-world diagnostic and therapeutic experiences of patients with GLS, focusing on their perceptions and expectations regarding disease management.
Methods: Utilizing Google Forms, we developed a questionnaire consisting of 10 items aimed at examining the diagnostic and therapeutic experiences of patients with GLS. This survey was distributed via email to all members of the Italian Association of Patients with Lichen Sclerosus (LISCLEA), which includes 564 female and 216 male members. The survey was accessible for a period of 48 hours in February 2020.
Results: Of the 780 members surveyed, 280 (36.3% response rate) completed the questionnaire, comprising 226 females (80.7%), 53 males (18.9%), and 1 respondent (0.4%) who did not declared her/his gender identity. A significant 34% of respondents waited over five years for a correct diagnosis of GLS. Diagnostic challenges were frequently reported, with a majority (78%) believing that doctors’ knowledge about LS is inadequate. Moreover, 63.9% expressed a need for better medical training concerning GLS, supported by calls for more research networks (42.5%) and specialized centers (26.1%). GLS had a severe impact on sexual health and relationships; 57.3% reported anxiety due to GLS, and 39% avoided intercourse because of symptoms like pain and discomfort. The majority (95%) received local treatments, while a small percentage (5%) underwent surgical interventions such as circumcision. The diagnostic and therapeutic process was perceived as difficult by most patients (82%).
Conclusions: GLS profoundly affects patients' quality of life, causing significant anxiety, discomfort, and often hindering sexual activity. The study highlights the commonality of late diagnoses and the insufficient referral of patients to specialists, underscoring the need for greater awareness and expertise among healthcare providers. Enhancing doctor awareness and knowledge could facilitate earlier diagnosis and more effective management of GLS, thereby improving outcomes for those affected by this debilitating condition. This research advocates urgent enhancement in both medical education regarding GLS and the establishment of more specialized care pathways to better address the complexities of this disease.