A Multi-Centered Case-Control Study of Vitiligo Support Groups and Quality of Life

June 2021 | Volume 20 | Issue 6 | Original Article | 672 | Copyright © June 2021

Published online May 20, 2021

Zoë I. Smith MDa, Jason F. Wang MDb, Nada Elbuluk MD MScc, Richard H. Huggins MDd, Mathew R. Birnbaum MDb, Alexandra Rzepecki MDe, Bhavnit K. Bhatia MDd, Christina Kratschmer MD PhDe, Beth McLellan MDe, Allison Kutner MDe

aWayne State University, Detroit, MI
bDepartment of Dermatology, University of San Francisco, San Francisco, CA
cDepartment of Dermatology, Keck School of Medicine of University of Southern California, Los Angeles, CA
dDepartment of Dermatology, The Permanente Medical Group, Richamond, CA
eDivision of Dermatology, Albert Einstein College of Medicine / Montefiore Medical Center; Bronx, NY

Background: There is limited research on the association between vitiligo support group membership and patient quality of life (QoL).
Objectives: To explore the association between support groups and QoL in those with vitiligo by evaluating and comparing the QoL of vitiligo support group members and non-support group members.
Methods: Support group members (n=135) and non-support group members (n=129) were recruited from the Global Vitiligo Foundation (GVF), and three academic medical centers respectively. Patients completed the Vitiligo-Specific Quality of Life (VitiQoL) instrument and a demographic survey.
Results: Mean VitiQoL scores for support group members were higher than non-support group members (48.6 ± 23.6 vs 33.0 ± 23.8; P-value < 0.0001), highlighting more negatively impacted QoL. Support group members were less likely to be undergoing treatment (27.4% vs 53.5%; P-value = <0.0001) and were more likely to report duration of vitiligo for >20 years (38.5% vs 19.4%; P-value = 0.0007).
Conclusions: Vitiligo support group membership is associated with worse QoL. Individuals with vitiligo who have worse QoL, chronic, and/or untreated vitiligo may be more likely to seek out vitiligo support groups. Support group referral should be considered in the therapeutic management of vitiligo, particularly in patients whose QoL is more significantly impacted, who fail or are who are without access to treatment or have longstanding disease.

J Drugs Dermatol. 2021;20(6):672-675. doi:10.36849/JDD.5706


Vitiligo is an acquired chronic autoimmune cutaneous pigmentary disease of the skin, affecting nearly 1-2% of the population worldwide.1 The disease causes destruction of melanocytes and is characterized by depigmented macules and patches commonly involving exposed areas including the face and hands. Though often thought of as an asymptomatic disease, vitiligo can include physical symptoms such as burning and itching. Additionally, 15–25% of people with vitiligo also have at least one other autoimmune disorder such as thyroid disease, rheumatoid arthritis, type 1 diabetes, psoriasis, pernicious anemia, Addison disease, or systemic lupus erythematosus (SLE).

Vitiligo has psychosocial burdens: it can negatively impact self-esteem, body image, social interactions, quality of interpersonal relationships, and sexual function.2 Patients with vitiligo are at an increased risk of developing psychological disorders including anxiety and depression.3 In addition, many face social discrimination and stigmatization. A number of studies highlight the significant effect that vitiligo has on a person’s quality of life (QoL) (4–10).

Addressing the psychosocial impact of vitiligo is an important part of disease management.11 Support groups are widely believed to be beneficial and have been shown to have multiple positive benefits including stress reduction, fostering a sense of community, decreasing patient isolation, and improving QoL.8

Limited research has been conducted on the association of vitiligo support group membership on patient quality of life (QoL). We sought to explore the association between support groups and QoL in patients with vitiligo by evaluating and comparing QoL in vitiligo support group members and non-support group members.