Pandya AG, Amoloja T, Bibeau K, DiBenedetti D, Kosa K, Butler K, Kornacki D, Ezzedine K. Assessing participants' experiences with vitiligo from patient interviews. Dermatol Ther. 2024 Sep;14(9):2467-78. doi: 10.1007/s13555-024-01241-w


INTRODUCTION: Vitiligo is an autoimmune disease causing skin depigmentation in the form of white patches. Individuals with vitiligo incur substantial psychosocial burden and have expressed frustration with their treatments.

METHODS: Qualitative interviews were conducted with adolescent and adult participants with vitiligo from 2 pivotal phase 3 clinical trials of ruxolitinib cream (Study 1) and a real-world panel (Study 2). Participants were asked about their disease burden and treatment goals.

RESULTS: Thirty-six participants from Study 1 and 23 from Study 2 were interviewed. In Study 1, the highest degree of impact was on reduced self-esteem (facial/body lesions, 62.5%/55.6%), social inhibition (65.6%/61.1%), and sun sensitivity (31.3%/55.6%). Most participants (83.3%) reported that facial improvement was equally (36.1%) or more important (47.2%) than body improvement, with mean importance (scale range, 0–10) of 8.1 and 6.9, respectively. Clinically meaningful change was reported by 83.3% and 92.9% of participants with 50% to 74% and ≥75% improvement in facial Vitiligo Area Scoring Index, respectively, and by 82.6% of participants with ≥25% improvement in total Vitiligo Area Scoring Index. In Study 2, most (82.6%) participants felt that the noticeability of their vitiligo affected their behavior. Nearly all (87.0%) said that an ideal treatment would repigment or return natural color to their facial skin; 56.5% considered ≥50% facial repigmentation to be the smallest meaningful improvement.

CONCLUSIONS: Participants from both qualitative interviews expressed substantial psychosocial burden. Repigmentation in both facial and body vitiligo were important, with clinically meaningful change determined to be ≥50% facial repigmentation and ≥25% body repigmentation.

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