Vitiligo causes substantial disease burden as reflected by QoL impairment and high WTP, especially in women. These results should draw the attention of physicians to this disease, as appropriate education and treatment are likely to improve the QoL of patients with vitiligo and may support patients' compliance and empowerment.

Background: In addition to clinical efficacy, patient-defined benefit assessment has become an important outcome parameter. Thus far, no such instrument has been developed for vitiligo. Objectives: Development and validation of a patient-defined benefit questionnaire in the therapy of vitiligo. Methods: Open questioning of 50 vitiligo patients generated 110 benefit items, which were converted into a 26-item questionnaire by a panel of dermatologists, psychologists and patients. This was used to record patient-defined needs prior to therapy and to evaluate patient benefit attained after therapy. A ‘patient benefit index’ (PBI) was formed on the basis of both. Validation was based on data of n = 1,023 vitiligo patients. Results: The questionnaires were feasible in clinical practice, Cronbach’s α (patient need questionnaire) was 0.94. The PBI showed convergent and discriminant validity with respect to quality of life and patient satisfaction. Conclusion: The PBI for vitiligo is a valid instrument, which is highly accepted in practice for recording patient-reported benefit.

Background: Vitiligo causes substantial disease burden and patient needs still remain underestimated. Objective: To assess the clinical features, treatment outcomes and satisfaction in patients with vitiligo. Methods: A nationwide, cross-sectional German postal survey was conducted. Clinical features and treatment outcomes of vitiligo (affected body surface, comorbidities, treatments applied, patient benefit index [PBI]) were evaluated using a standardized patient questionnaire. Results: 1,023 patients (71.4% women, mean age 44.4 years) completed the questionnaire. The average onset of disease was at 24.1 years, and the mean disease duration was 20.3 years. The mean number of body sites affected was 6.9, and the mean affected body surface area was 14.9%. On average, 3.7 therapies had been applied previously, with a total PBI of 1.03 ± 1.12. Only 38.7% experienced a PBI >1, which indicates a minimal patient benefit. Conclusions: Most therapeutic options are considered to be of low patient benefit. There is a need for more beneficial treatments and improved care in patients with vitiligo.