Views and Beliefs of Vitiligo Patients in Online Discussion Forums: A Qualitative Study
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.
Practice Points
- Online forums provide invaluable insight on vitiligo disease management, psychosocial impact, and burden on quality of life. Patient care can be improved by inquiring where patients seek information and whether online forums are utilized.
- Commonly discussed topics in online forums were cosmetic concealment of vitiligo lesions and homeopathy or “cure” discussions. Health care providers can engage in honest conversations about evidence-based medical treatments for vitiligo. The interest in cosmetic management highlights a relevant research area in this field.
- Health care providers can better serve patients with vitiligo by providing online resources that are reputable and can help guide patients to credible internet sources such as the Global Vitiligo Foundation.
Skin Tone and Implications—The belief that vitiligo lesions are less dramatic or less anxiety provoking for individuals with lighter skin was noted by users themselves and by health care providers in certain cases. Skin tone and its impact on QOL was confusing and contentious. Some users with fair skin stated their vitiligo was “less of an annoyance” or “less obvious” compared with individuals with darker complexions. Conversely, other accounts of self-reported White users vehemently stressed the anxieties felt by depigmented lesions, despite being “already white at baseline.”
“Was told by my dermatologist (upon diagnosis) that ‘You’re lucky you’re not African American—it shows up on them much worse. You’re so fair, it doesn’t really matter.’ ”
“You didn’t say what race you are. I could imagine it has a bigger impact if you are anything other than White.”
Comment
Patients Looking for Cures—The general attitude within the forums was uplifting and encouraging, with users detailing how they respond to others in public and sharing their personal perspectives. We found a mix of information regarding disease management and treatment of vitiligo. Overall, there was uncertainty about treatments, with individuals expressing concern that their treatments were ineffective or had failed or that better alternatives would be more suitable for their condition. We found many anecdotal endorsements of homeopathic remedies for vitiligo, with users boasting that their disease had not only been cured but had never returned. Some users completely denounced these statements, while other threads seemed to revolve completely around “cure” discussions with no dissenting voices. The number of discussions related to homeopathy was concerning. Furthermore, there often were no moderators within threads to remove cure-related content, whether commercially endorsed or anecdotal. It is plausible that supplements and vitamins recommended by some physicians may be incorrectly interpreted as a “cure” in online discussions. Our findings are consistent with prior reports that forums are a platform to express dissatisfaction with treatment and the need for additional treatment options.15,22
Concern Expressed by Health Care Providers—Prior qualitative research has described how patients with chronic dermatologic conditions believe that health care providers minimize patients’ psychological distress.27,28 We found several accounts in which an individual had explicitly stated their provider had “belittled” the extent and impact of vitiligo when comparing skin phototypes. This suggests either that physicians underestimate the impact of vitiligo on their patients or that physicians are not expressing enough empathic concern about the impact the condition has on those affected.
Cosmetic Aspects of Vitiligo—Few clinical trials have investigated QOL and cosmetic acceptability of treatments as outcome measures.29 We found several instances in which users with vitiligo had reported being dismissed as having a “cosmetic disease,” consistent with other work demonstrating the negative impact on such dismissals.22 Moreover, concealment and camouflage techniques frequently were discussed, demonstrating the relevance of cosmetic management as an important research topic.
Trustworthy Sources of Health Information—Patients still view physicians as trustworthy and a key source of health care information and advice.30-32 Patients with vitiligo who have been directed to reliable information sources often express gratitude22 and want health professionals to remain an important source in their health information-seeking.31 Given the range in information discussed online, it may be valuable to invite patients to share what information they have encountered online.
