Self-Stigma in Adults Living With Chronic Skin Disease: Development of the HautKompass Web-Based Program and Pilot Test of Its Usability, Acceptability, and Feasibility.

Abstract

Background: Self-stigma is common among people with chronic skin disease and can substantially impair quality of life and psychosocial well-being. Few interventions targeting skin disease-related self-stigma are available, especially in Germany.

Objective: This pilot study aims to develop a web-based self-guided program to reduce self-stigma among people with chronic skin disease, and test its usability, acceptability, and feasibility.

Methods: We developed the HautKompass program based on 2 systematic literature reviews and the expertise from psychodermatologists and patients. Its usability, acceptability, and feasibility were tested among adults with psoriasis, atopic dermatitis, hidradenitis suppurativa, alopecia areata, and vitiligo. After completing the program, participants provided feedback on each session and on their overall experience using the Client Satisfaction Questionnaire and study-specific feedback items. The program was considered feasible if the dropout rate was below 40% and participants spent 45 minutes or less per session. Data were analyzed descriptively.

Results: HautKompass is grounded in compassion-focused therapy and cognitive behavioral therapy and consists of 8 self-guided sessions. Of the 41 persons who provided informed consent and filled in the screening questionnaire, 29 were eligible for participation. A total of 27 participants started the program and 20 completed all sessions and the posttest questionnaire. Results indicated high usability (mean 26.12, SD 6.13; on a scale ranging from 8-32) and acceptability (mean 17.41, SD 3.12; on a scale ranging from 5-20). Users rated the program as helpful, the psychoeducation and exercise instructions as comprehensible, and the extent of the program as adequate. Criticism concerned the length of some sessions, the electronic voice used in exercises, and some of the examples being too "general" or "cliché." Regarding feasibility, the program's extent was deemed adequate, participants spent substantially less time on the individual sessions (mean 16.9, SD 4.4 minutes) than the predefined criterion and few participants dropped out after starting the program (n=7, 26%), indicating low barriers. Importantly, the majority of users dropped out within the first 2 sessions, possibly due to the slightly longer duration and focus on theory, or due to unmet expectations, highlighting areas for improvement.

Conclusions: Overall, HautKompass was found to be a usable, acceptable program with feasible implementation. Limitations of this pilot study include not testing accessibility for people with disabilities and the small, relatively young, and mostly female sample, which limits the generalizability of the findings. The feedback obtained was used to revise the program and the recruitment strategy prior to testing its effectiveness in a randomized controlled trial. If HautKompass is found to be effective in reducing skin disease-related self-stigma, it will be made widely available to improve psychosocial care for people with chronic skin disease and could be adapted for other skin diseases and visible differences in general.