On the internet, your name can be anything or nothing at all — a fact that may help you be more honest about your most personal health conditions than anywhere else. That’s why a team of researchers turned to an online forum to understand the most vexing issues facing rosacea patients, even issues the patients are hesitant to ask doctors about. They found patients full of questions and, in some cases, desperation and worry.
Rosacea patients are asking fellow patients about topics ranging from confusing treatments and scary side effects to dietary restrictions and high medication costs. In certain cases, patients appear to be shamed by their rosacea and desperate to find a solution like new medications.
“Some are more frustrated than we think,” says Hossein Alinia, M.D., a clinical researcher in the department of dermatology at Wake Forest School of Medicine in Winston-Salem, N.C. And, he says, many seem to not be getting accurate or sufficient information.
Dr. Alinia is lead author of a new study that appeared Jan. 27 in the Journal of Dermatological Treatment. He and colleagues analyzed 2,705 posts and focused on 309 seeking advice via a forum on the website rosacea-support.org. The study authors accessed the English-language website, which offers free membership, in August 2013.
While the forum isn’t representative of all rosacea patients, it allows researchers to “access a lot of information that you cannot obtain from patients,” Dr. Alinia says.
The forum participants sought recommendations about treatments (50.1%), triggers (17.1%), diet (15.5%), skincare (11.9%) and special presentations of the disease (7.1%).
Topics of confusion and worry
Patients were confused about choosing the proper skincare products like moisturizers and cleansers, Dr. Alina says. Rosacea subtypes and their interactions were often confusing too, he says, and patients worried about long-term side effects of antibiotics. Patients often didn’t understand that antibiotics reduce inflammation but post little risk as germ fighters.
“We use sub-antimicrobial dose of antibiotics, and the chance of antibiotic resistance is minimal,” Dr. Alina says.
Light therapy also spawned many questions, with patients wondering about side effects and length of time needed for treatment, he says. Some patients who had undergone light therapy said their physicians hadn’t given them full information about side effects and effectiveness. Many sought home light therapy devices and tried to find the best available device instead of going to the costly light therapy sessions.
Overall, more than 80% of posts about treatments expressed dissatisfaction and revealed personal pain connected to rosacea. A patient might post something like “I’ve stayed home for a long time, my marriage is in danger. Let me know about new medications,” Dr. Alinia says.