Researchers analyzed messages in an online forum to understand the most vexing issues facing rosacea patients. They found tremendous confusion around available therapeutics.
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.
The study misses recent developments in rosacea treatments since the forum questions were posted more than two years ago. According to Dr. Alinia, a new generation of FDA-approved topical creams for rosacea subtype 1 may have improved things for patients over the past one to two years.
What are the lessons of the study? Dr. Alinia says the findings reveal that some rosacea patients suffer from confusion and frustration.
“They may rely on unreliable sources of information, and some turn to over-the-counter drugs because they don’t have money or insurance to pay for medical care.”
When they do work with physicians, patients may feel unsatisfied by instruction about diet, skincare products, treatment and side effects, he says. “Many patients like to be more involved in the course of their treatment”.
In terms of information, physicians “should at least provide each patient with reliable websites, booklets, anything that can help them,” he says. In addition, “they should provide more information about proper moisturizers, sunscreen and foundations. The majority of rosacea patients are women, and they should be given information about how to use makeup and how they can combine moisturizers, sunscreen and cosmetic products.”
In the big picture, “as patients trust their physicians more, their adherence to medication will be higher. In those who have better adherence to medication, the progression of the disease is slower and the chance of relapse is lower.”