Patients with vulvar lichen sclerosus prioritize education on disease etiology, triggers and treatment

Dear Editor,

Adherence to topical corticosteroids in patients with vulvar lichen sclerosus is low (1). Insight into preferences for disease education among patients with vulvar lichen sclerosus may help to identify patients’ educational needs (2–4). Thus, we performed a small prospective survey study assessing the interest of patients with vulvar lichen sclerosus in learning about different disease topics.

The study received Wake Forest Health Sciences University Institutional Board Approval. Participants ≥18 years of age with vulvar lichen sclerosus were recruited when presenting to Wake Forest dermatology clinics. Patients were asked to rank their interest in learning about six different topics on vulvar lichen sclerosus using a 10-point Likert scale (with 10 being the greatest).

Nine patients between the ages of 44 and 76 years were included in the study. The highest rated learning topics were a description of the disease and its triggers, each with a median (interquartile range) of 9 (5–10) (Table 1). Additional highly rated topics included topical treatment options and their modes of action, 8 (5–10), and adverse effects of topical therapies, 7 (5–10) (Table 1). Learning about support groups was the lowest rated learning topic, 1 (0–8) (Table 1).

Table 1. Patient interest in learning about vulvar lichen sclerosus, on a scale from 0 to 10 (with 10 being the greatest).

Learning topic	Median (IQR)
Description of vulvar lichen sclerosus	9 (5–10)
Triggers of vulvar lichen sclerosus	9 (5–10)
Topical treatment options and modes of action	8 (5–10)
Adverse effects of topical therapies	7 (5–10)
Methods of safe and effective use of topical therapy	7 (0–9)
Support groups and services	1 (0–8)

IQR: interquartile range.

Patients appear to prioritize information on the etiology of vulvar lichen sclerosus, which may be in part due to a desire to avoid disease triggers. Treatment related learning topics were also highly ranked, which may reflect patient interest in in-depth counseling when initiating treatment. While it may be expected that the psychosocial impact of vulvar lichen sclerosus would prompt interest in learning about support groups, this was not reflected in the interests of patients queried in this study.

Disclosure statement

Feldman has received research, speaking and/or consulting support from AbbVie, Accordant, Almirall, Alvotech, Amgen, Arcutis, Arena, Argenx, Biocon, Boehringer Ingelheim, Bristol-Myers Squibb, Dermavant, Eli Lilly and Company, Eurofins, Forte, Galderma, Helsinn, Janssen, Leo Pharma, Micreos, Mylan, Novartis, Ono, Ortho Dermatology, Pfizer, Regeneron, Samsung, Sanofi, Sun Pharma, UCB, Verrica, Voluntis, and vTv Therapeutics. He is founder and part owner of Causa Research and holds stock in Sensal Health. Pichardo worked at the advisory board for Novartis. Zaino, Pixley and Parks have no conflicts of interest to disclose.

Additional information

Funding

None.