Search Criteria—We conducted our forum search in February 2020 with a systematic approach using predetermined phrases—online forum vitiligo support, vitiligo online message board, and vitiligo forums—which yielded more than 358,171 total results (eTable 1). Threads were identified in chronological order (from newest to oldest) based on how they appeared during each internet search, and all Google results for the respective search phrases were reviewed. Dates of selected threads ranged from 2005 to 2020. Only sites with US domains were included. Posts that either included views and understandings of vitiligo or belonged to a thread that contained a vitiligo discussion were deemed relevant for inclusion. Forums were excluded if registration or means of payment was required to view posts, if there were fewer than 2 user replies to a thread, if threads contained patient photographs, or if no posts had been made in the last 2 years (rendering the thread inactive). No social media platforms, such as Facebook, or formal online platforms, such as MyVitiligoTeam, were included in the search. A no-fee-for-access was chosen for this study, as the majority of those with a chronic condition who encounter a required paywall find the information elsewhere.25
Data Analysis—A total of 39 online forums were deemed relevant to the topic of vitiligo; 9 of them met inclusion criteria (eTable 2). The messages within the forums were copied verbatim into a password-encrypted text document, and usernames in the threads were de-identified, ensuring user confidentiality.
An inductive thematic analysis was utilized to explore the views and beliefs of online forum users discussing vitiligo. One author (M.B.G.) read the extracted message threads, developed an initial codebook, and established a finalized version with the agreement of another author (A.M.B.)(eTable 3). The forums were independently coded (M.B.G. and A.M.B.) in a line-by-line manner according to the codebook. Discrepancies were documented and resolved. Data saturation was adequately achieved, such that no new themes emerged during the iterative coding process. NVivo was used for qualitative analysis.
Results
Nine forums met inclusion criteria, comprising 105 pages of text. There were 61 total discussion threads, with 382 anonymous contributing users. Most users initiated a thread by posting either a question, an advice statement, or a request for help. The psychosocial impact of the disease permeated multiple domains,including personal relationships and daily life. Several threads discussed treatment, including effective camouflage and makeup, as well as peer validation of physician-prescribed treatments, along with threads dedicated to “cures” or homeopathy regimens. In several instances, commercial product endorsement, testimonials, and marketing links were reposted by the same user multiple times.
Inductive thematic analysis highlighted diverse themes and subthemes related to the beliefs and perspectives of users with vitiligo or with relatives or friends with vitiligo: psychosocial impact, disease management and camouflage/concealment, alternative medicine/homeopathy/cures, interactions with the public and health care providers, and skin tone and race. Quotes from individuals were included to demonstrate themes and subthemes.
Psychosocial Impact: QOL, Sources of Support, and Coping—There was a broad range of comments on how patients cope with and view their vitiligo. Some individuals felt vitiligo made them special, and others were at peace with and accepted their condition. In contrast, others reported the disease had devastated them and interfered with relationships. Individuals shared their stories of grief and hardships through childhood and adulthood and their concerns, especially on affected visible areas or the potential for disease progression. Users were vocal about how vitiligo affected their daily routines and lives, sharing how they felt uncomfortable outside the home, no longer engaged in swimming or exposing their legs, and preferred to stay inside instead. Some users adopted a “tough love” approach to coping, sharing how they have learned to either embrace their vitiligo or “live with it.” Some examples include:
“My best advice is go with the flow, vitiligo is not the worst thing that can happen.”