Vitiligo is more than skin deep: a survey of members of the Vitiligo Society

Abstract

Background: Vitiligo is a common, largely acquired skin disease of unknown aetiology, which causes a variable amount of skin and hair depigmentation in affected people. It affects over half a million people in the UK alone, and a massive 50 million people worldwide.

Aim: To quantify the psychosocial burden of vitiligo in the UK, by estimating its effect on daily life.

Methods: All members (n = 1790) of the Vitiligo Society, a UK national patient support group, were sent a questionnaire. Survey questions included demographics, disease-related characteristics, effect of vitiligo on daily life, and psychosocial support measures for patients with vitiligo. Results. In total, 520 (29% of members) responded, of which 354 (68%) were women. Vitiligo affected the hands in 414 (80%) and the face in 394 (76%) of the respondents. Over half (56.6%) of respondents indicated that vitiligo moderately or severely affects their quality of life (QOL). Finding a cure or effective lasting treatment was the main priority for most affected respondents. Most respondents obtain information about their disease from nonmedical sources: 431 (83%) from the Vitiligo Society and 129 (25%) from the internet, compared with 61 (12.5%) from dermatologists.

Conclusion: Vitiligo is a skin condition that moderately or severely affects the QOL of most patients. Although most patients look for a cure or long-lasting treatment, only 12.5% of respondents to our survey had obtained information from a dermatologist. Vitiligo is a common condition that affects more than the skin, and has profound psychosocial implications for affected patients.