JMIR Publications

ABSTRACT

Background:

Lichen sclerosus (LS) is a chronic inflammatory dermatosis associated with significant physical and psychosocial morbidity. Despite established management guidelines, patients frequently experience diagnostic delays, inconsistent counseling, and uncertainty regarding disease progression. Online patient communities provide a unique opportunity to examine lived experiences that may not be fully captured in clinical settings.

Objective:

To characterize patient experiences, psychosocial concerns, and emotional burden related to LS through analysis of discussions within an online patient support community.

Methods:

We conducted a cross-sectional computational analysis of publicly available discussions from Reddit’s r/lichensclerosus community between 2017 and 2025. Posts and comments were analyzed separately using topic modeling, psychosocial multi-label classification, and emotion and affect analysis. Temporal trends in discussion topics and psychosocial themes were also evaluated.

Results:

A total of 1,313 posts and 659 comments were included. Discussion centered around illness uncertainty and fear of disease progression, accounting for 64.1% of posts and exhibiting the highest levels of emotional distress. Treatment-related concerns, particularly topical corticosteroid use, represented the second most common theme (21.2%). Psychosocial burden was substantial, with support-seeking behaviors identified in 86.97% of posts, alongside frequent discussion of sexual dysfunction and body image disturbance. Clinician mistrust demonstrated the strongest association with psychosocial burden across both posts and comments. Posts were characterized primarily by first-person narratives of distress and uncertainty, whereas comments focused on reassurance, shared experiences, and practical management strategies. Emotional burden was consistently higher in posts than comments, suggesting a potential buffering effect of peer support and community engagement. Temporal analyses demonstrated minimal changes in discussion patterns over the study period.

Conclusions:

Online communities serve as important spaces for validation, knowledge sharing, and informal care navigation among individuals with LS. These findings suggest that clinic-based perspectives may not fully capture the daily lived experiences and psychosocial challenges associated with the disease. Improved patient-centered education, clinician-patient communication, and integration of psychosocial support into LS care may better address patient needs. Leveraging real-world patient discourse offers valuable insight into patient priorities and may help inform more responsive and empathetic models of care. Clinical Trial: Not applicable.