Definition of Severity and Relapse for Vitiligo: An International Consensus Statement.

Abstract

IMPORTANCE There is no international consensus on defining vitiligo severity or relapse. Current measures (such as body surface area) quantify depigmentation but do not fully capture the broader clinical and psychosocial effects of the disease. OBJECTIVE To develop internationally agreed-upon definitions and criteria for vitiligo severity and relapse as part of the International Consensus on Definition of Severity and Relapse in Vitiligo study. EVIDENCE REVIEW This global, mixed-methods consensus study used a multistep approach, including comprehensive literature review, qualitative study, 2 rounds of electronic Delphi surveys, and a final consensus meeting. To ensure adequate diversity and inclusivity and to capture a broad range of experiences, perspectives, social contexts, and representation, a recruitment framework (encompassing variation in age, sex, and skin phototypes) was predefined. FINDINGS In total, 91 people from 5 continents expressed interest in participating. Experts (dermatologists, trialists, methodologists, nurses, psychologists, journal editors, and researchers) and people with vitiligo from diverse ethnic backgrounds and skin phototypes took part. During the first electronic Delphi survey round, 85 people participated and 81 participated in round 2 (response rate of 95% in each survey round). Consensus was reached that even though measurement of body surface area remains a necessary and adequate starting point for assessing vitiligo severity, this measure alone is insufficient to capture disease burden. The final consensus meeting included 44 participants (response rate of 54%). Twelve criteria for upgrading severity were recommended, encompassing both clinical aspects of vitiligo and its psychosocial effects. The major criteria for vitiligo include spread or active disease, involvement of highly visible or high-impact areas, psychological distress, stigmatization, lack of self-acceptance, and overall burden. The minor criteria for vitiligo include darker skin tones, younger age, involvement of scalp/facial hair, increased risk of sunburn, impact on career or school, and perceived loss of personal or cultural identity. No consensus was reached on the extent of pigment loss. Relapse was defined as loss of pigmentation in previously repigmented lesions (repigmentation had occurred either spontaneously or with treatment). CONCLUSION AND RELEVANCE This global, mixed-methods consensus study established internationally agreed-upon severity criteria for vitiligo. This consensus aims to bridge the gap between physician assessment and patient experience; improve the relevance and consistency of the severity classification in clinical care, research, and regulatory frameworks; and help close the remaining gaps in the diagnosis and classification of vitiligo.