Views and Beliefs of Vitiligo Patients in Online Discussion Forums

A Qualitative Study

Mary Beth Gadarowski, MD; Arjun M. Bashyam, MD; Amy J. McMichael, MD; Steven R. Feldman, MD, PhD

Disclosures

Cutis. 2022;109(1):49-53, e2-e3. 

In This Article

Abstract and Introduction

Abstract

Individuals with chronic illnesses turn to online communities to engage in asynchronous peer-to-peer exchanges to better understand and manage their disease. Messages and advice exchanged by online users with vitiligo are not well characterized. We conducted a qualitative study to explore the content exchanged by individuals with vitiligo in online forums. An interpretive research paradigm was utilized to assess public online forum content. A systematic search using the phrases online forum vitiligo support, vitiligo online message board, and vitiligo forums identified 39 relevant forums; 9 of them met inclusion criteria, with 382 total anonymous users. Major themes and subthemes included vitiligo disease management, homeopathy/home remedies, psychosocial impact, public perceptions, and camouflage/concealment.

Introduction

Vitiligo is a chronic dermatologic condition that negatively affects quality of life (QOL), with substantial burden on the psychosocial well-being of patients.[1] There is no cure, and current treatment modalities are aimed at controlling the chronic relapsing condition.[1–3] Despite topical and cosmetic treatments for stabilization and repigmentation, vitiligo remains unpredictable.[3]

All genders, races, ethnicities, and socioeconomic classes are equally affected.[4] The underlying etiology of vitiligo remains unknown to a great extent and is more poorly understood by the general public compared with other skin diseases (eg, acne).[5] Patients with vitiligo experience social withdrawal, decreased sense of self-esteem, anxiety, depression, and suicidal ideation.[5,6] Stigmatization has the greatest impact on QOL, with strong correlations between avoidance behaviors and lesion concealment.[6–8] Although the condition is especially disfiguring for darker skin types, lighter skin types also are substantially affected, with similar overall self-reported stress.[6,7]

Individuals with chronic illnesses such as vitiligo turn to online communities for health information and social support, commiserating with others who have the same condition.[9,10] Online forums are platforms for asynchronous peer-to-peer exchange of disease-related information for better management of long-term disease.[11] Moreover, of all available internet resources, online forum posts are the most commonly accessed source of information (91%) for patients following visits with their doctors.[12]

Qualitative research involving chronic skin conditions and the information exchanged in online forums has been conducted for patients with acne, psoriasis, and atopic dermatitis, but not for patients with vitiligo.[13–16] Although online questionnaires have been administered to patients with vitiligo, the content within online forums is not well characterized.[2,17]

The purpose of this qualitative study was to evaluate the online content exchanged by individuals with vitiligo to better understand the general attitudes and helpseeking behaviors in online forums.

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