Where can patients obtain more information about their diagnoses and prescription drugs, and answers to the assortment of questions they have about living with a chronic disease once they leave the rheumatologist office? Patient education materials can be found in many places on the internet, but those looking for answers may need a helping hand to guide them down the right path toward useful and credible information.
Explore this issueMay 2019
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“Unfortunately, there is a lot of bad information on the internet,” says Judith James, MD, PhD, vice president of clinical affairs at the Oklahoma Medical Research Foundation, Oklahoma City, and a rheumatologist who specializes in lupus. “I encourage patients to stick with very reliable, well-known sources,” such as the ACR, the Lupus Foundation of America and the Centers for Disease Control and Prevention, she says (see sidebar, p. 42, for a list of useful websites mentioned herein).
Part of being a rheumatologist is counseling patients and leading them to the best sources that can help them find answers, says Richard Martin, MD, MA, professor of medicine, rheumatology, at Michigan State University College of Human Medicine, Grand Rapids.
“Most rheumatologists go into rheumatology because they like their patients,” notes Dr. Martin. “They like to talk with them. They want to be a counselor. That’s one of the intrinsic personality traits of people who choose to do rheumatology.”
Dr. Martin likes the ACR’s patient fact sheets, available on its website, and views them as useful ways to introduce basic information about a particular topic or disease. The site includes information on common medications and therapies, dosages, side effects and risks.
“What’s helpful about them is that they come from the American College of Rheumatology,” says Dr. Martin. “The authority and the legitimacy that comes from having the [ACR] name on those kinds of drug- and disease-related materials is useful.”
Certain medical institutions lead the way in efforts to develop patient educational materials that patients can easily find on their affiliated websites, including Johns Hopkins Medicine, Baltimore; the Mayo Clinic, Rochester, Minn.; and the Cleveland Clinic, Ohio.
The Mayo Clinic offers a wide range of helpful online materials for patients with rheumatoid arthritis and associated conditions. Emily Blahnik, a media relations coordinator for the Mayo Clinic’s department of public affairs, notes in an email, “On our website, we have an overview of rheumatoid arthritis, along with its symptoms, diagnosis, etc. Mayo Clinic produces its own patient education materials with the knowledge of our experts on staff.”
The Hospital for Special Surgery (HSS), New York, which specializes in orthopedics and rheumatologic conditions, offers patient education on a long list of diseases, including ankylosing spondylitis and rheumatoid arthritis. Akin to similar sites, topics generally cover an overview of the disease, symptoms, diagnosis, treatments, related illnesses and, in some cases, a list of current clinical trials on conditions such as vasculitis.
“There are many websites now available, some very helpful, some truly awful,” says Michael Lockshin, MD, MACR, director of the Barbara Volcker Center for Women and Rheumatic Disease at HSS and professor of medicine and obstetrics-gynecology at Weill Cornell Medical College, New York.