What is successful repigmentation in vitiligo from the point of view of patients?

dear editor, Based on an international e‐Delphi consensus, repigmentation has been defined as a core outcome in vitiligo. Many measurement instruments have been used to assess repigmentation; to date, the Vitiligo Extent Score and the Vitiligo Area Severity Index are the best validated. ,

However, for interpretation of this outcome, little evidence is available on the thresholds of successful repigmentation. In previous Cochrane reviews on vitiligo, success was arbitrarily defined as > 75% repigmentation. But why was 75% chosen as the limit? In atopic eczema and psoriasis, the Psoriasis Area and Severity Index 75% and the Eczema Area and Severity Index 75% are commonly used to define successful treatment. , However, in vitiligo – where treatments generally yield less improvement – this analogy may not be true. Previous clinical studies defined successful repigmentation varying from ‘any repigmentation’ to a 100% repigmentation, and was usually defined by physicians. Until now, little has been known on patients’ perspectives regarding successful treatment in terms of repigmentation. In addition, these success percentages could differ depending on location. Remarkably, Eleftheriadou et al. showed, in three focus groups, that unanimous agreement was reached in all participants with vitiligo that 80–100% repigmentation of a target lesion was regarded as successful.

We aimed to evaluate the definition of successful repigmentation for facial and nonfacial lesions from the patient’s perspective by carrying out a prospective cross‐sectional questionnaire study.

All patients aged ≥ 16 years with nonsegmental vitiligo who had consecutively visited our outpatient clinic at the Netherlands Institute for Pigment Disorders of the Amsterdam University Medical Center between April 2017 and January 2019 were asked to complete a secure online questionnaire (LimeSurvey version 2.6.7). Written informed consent was obtained from all patients. This survey consisted of questions regarding patient demographics, quality of life and successful repigmentation rates concerning the patient’s own situation. Answers were based on a visual analogue scale ranging from 0% to 100%, with separate questions for facial and nonfacial lesions (on the body). Only fully completed questionnaires were included in the analysis. This study was not subject to the Medical Research Involving Human Subjects Act, as confirmed by the Ethics Committee of the Amsterdam UMC (W17_349).

The overall response rate was 70% (n = 377; 60% fully completed, 8% not completed, 2% declined). The male: female ratio was 133 : 192, median age was 40 years (range 16–77) and median disease duration was 7 years. Facial lesions were present in 86% of participants and nonfacial lesions in 70%. Eighty‐three per cent of patients had a light skin type (Fitzpatrick I–III) and 17% had a dark skin type (Fitzpatrick IV–VI). Median Dermatology Life Quality Index total score was 2 (interquartile range 1–6).

Of the 325 patients that completed the questionnaire, 221 (68%) and 122 (37%) patients considered ≥ 75% repigmentation successful for their facial vitiligo and nonfacial vitiligo lesion(s), respectively (Fig 1). The success threshold for facial lesions in patients with a dark skin type was significantly higher compared with patients with a light skin type (median 90% vs. 80%; P Mann–Whitney ‐test = 0·018). The same applied to nonfacial lesions (dark skin type 70% vs. light skin type 50%, P Mann–Whitney ‐test = 0·035). Twenty‐two per cent of patients reported that 100% repigmentation should be regarded as successful for facial vitiligo.

Figure 1

Percentage repigmentation regarded as successful by patients for facial and nonfacial lesions. The bar graph represents the percentages in repigmentation that patients with vitiligo have reported to be regarded as successful for facial lesions (white bars) and for lesions on the body (black bars). The y‐axis represents the percentage of the total number of patients.

Our results are largely in agreement with the study of Eleftheriadou et al. Remarkably, one in five patients only regards treatment successful if 100% of the facial lesions are repigmented. However, a considerable proportion also seem to be content with lower repigmentation rates, indicating a great variation in our population. In addition, for nonfacial lesions, patients seem to be less critical and were satisfied with less repigmentation.

There are some limitations to this study. This questionnaire was constructed specifically for this study and was not validated. Moreover, as patients were included at a national referral centre, the patient population in this study may not fully reflect the larger community of people with vitiligo who do not seek care or are not referred to our centre. However, the strengths of this study include the large cross‐sectional group of patients and the specification of facial vs. nonfacial lesions. In addition, patients were able to complete the questionnaire at home without potential influences.

This study indicates that there is a great variety among patients regarding their definitions of successful repigmentation. Furthermore, successful repigmentation seems to depend on the location of the lesions and on skin type. In line with a previous focus group study, we found that only a high percentage of repigmentation (≥ 75%) in the face is regarded as successful by the majority of the patients. For future research we recommend involving different ethnicities and more patients with a dark skin type, to determine successful repigmentation.

Author Contribution

Vidhya Shankar Narayan: Conceptualization (equal); Data curation (lead); Formal analysis (lead); Investigation (lead); Methodology (lead); Visualization (lead); Writing‐original draft (lead). Sanne Elisabeth Uitentuis: Conceptualization (equal); Writing‐review & editing (equal). Marcel Bekkenk: Supervision (equal); Writing‐review & editing (equal). Albert Wolkerstorfer: Conceptualization (lead); Methodology (equal); Supervision (lead); Writing‐review & editing (lead).