Background: Vitiligo is a chronic depigmenting skin disorder which affects around 0.5-1% of the world�s population.\nThe outcome measures used most commonly in trials to judge treatment success focus on repigmentation.\nPatient-reported outcome measures of treatment success are rarely used, although recommendations have been made\nfor their inclusion in vitiligo trials. This study aimed to evaluate the face validity of a new patient-reported outcome\nmeasure of treatment response, for use in future trials and clinical practice.\nMethod: An online survey to gather initial views on what constitutes treatment success for people with vitiligo or their\nparents/carers, followed by online discussion groups with patients to reach consensus on what constitutes treatment\nsuccess for individuals with vitiligo, and how this can be assessed in the context of trials. Participants were recruited\nfrom an existing database of vitiligo patients and through posts on the social network sites Facebook and Twitter.\nResults: A total of 202 survey responses were received, of which 37 were excluded and 165 analysed. Three main\nthemes emerged as important in assessing treatment response: a) the match between vitiligo and normal skin (how\nwell it blends in); b) how noticeable the vitiligo is and c) a reduction in the size of the white patches. The majority of\nrespondents said they would consider 80% or more repigmentation to be a worthwhile treatment response after\n9 months of treatment. Three online discussion groups involving 12 participants led to consensus that treatment\nsuccess is best measured by asking patients how noticeable their vitiligo is after treatment. This was judged to\nbe best answered using a 5-point Likert scale, on which a score of 4 or 5 represents treatment success.\nConclusions: This study represents the first step in developing a patient reported measure of treatment success\nin vitiligo trials. Further work is now needed to assess its construct validity and responsiveness to change.
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