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.
Our study highlights the conflicting health information and advice shared by users in online forums, complicating an already psychologically burdensome condition. Guiding patients to credible, moderated sites and resources that are accurate, understandable, and easy to access may help dispel the conflicting messages and stories discussed in the online community.
Study Strengths and Limitations—Limitations included reporting bias and reliance on self-reported information on the diagnosis and extent of individuals’ vitiligo. Excluding social media websites and platforms from the data collection is a limitation to comprehensively assessing the topic of internet users with vitiligo. Many social media platforms direct patients and their family members to support groups and therefore may have excluded these particular individuals. Social media platforms were excluded from our research owing to the prerequisite of creating user accounts or registering as an online member. Our inclusion criteria were specific to forums that did not require registering or creating an account and were therefore freely accessible to all internet viewers. There is an inherent lack of context present in online forums, preventing data collection on individuals’ demographics and socioeconomic backgrounds. However, anonymity may have allowed individuals to express their thoughts more freely.
An integrated approach, along with our sampling method of online forums not requiring registration, allows for greater transferability and understanding of the health needs of the general public with vitiligo.
Conclusion
Individuals with vitiligo continue to seek peer psychosocial support for the physical and emotional management of their disease. Counseling those with vitiligo about cosmetic concealment options, homeopathy, and treatment scams remains paramount. Directing patients to evidence-based resources, along with providing structured sources of support, may help to improve the psychosocial burden and QOL experienced by patients with vitiligo. Connecting patients with local and national support groups moderated by physicians, such as the Global Vitiligo Foundation (https://globalvitiligofoundation.org/), may provide benefit to patients with vitiligo.
