Objective: Steroid phobia in people with dermatologic conditions is associated with noncompliance with topical corticosteroids (TCS). Although it has not been studied in those with vulvar lichen sclerosus (vLS), first-line therapy is lifelong maintenance TCS, and noncompliance is associated with impaired quality of life, progression of architecture changes, and vulvar skin cancer. The authors aimed to measure steroid phobia in patients with vLS and determine their most valued sources of information to direct future interventions to address this phenomenon.
Methods: The authors adapted a preexisting, validated scale for steroid phobia (TOPICOP), which is a 12-item questionnaire that produces a score of 0 = no phobia and 100 = maximum phobia. The anonymous survey was distributed across social media platforms with an in-person component at the authors' institution. Eligible participants included those with clinical or biopsy-proven LS. Participants were excluded if they did not consent or did not communicate in English.
Results: The authors obtained 865 online responses over a 1-week period. The in-person pilot obtained 31 responses, with a response rate of 79.5%. Mean global steroid phobia score was 43.02 (21.9)% and in-person responses were not significantly different (40.94 [16.03]%, p = .59). Approximately 40% endorsed waiting as long as they can before using TCS and stop as soon as possible. The most influential sources to improve patient comfort with TCS were physician and pharmacist reassurance over online resources.
Conclusions: Steroid phobia is common in patients with vLS. Focused efforts to address steroid phobia among health care providers is the next best step toward improving patient comfort with TCS.
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