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.
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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.
“What I recommend depends very much on what questions patients ask,” says Dr. Lockshin. “The chat rooms and ‘ask the doctor’ sessions work best when the questions are about atypical or rare manifestations of illness, since answers can be more specific to the individual’s questions.”
It is important to keep the individual person in mind when recommending or providing patient education, says Dr. Martin. He considers what would be of interest and salient to each patient. “I will introduce people to [materials], then show them that I have a couple of different options [and ask], ‘Does any of this interest you?’” says Dr. Martin. “Then they decide what detail of information they want to take home with them to read.”
In addition, Dr. Martin’s office uses Santovia—a proprietary patient education platform for electronic medical records systems—to populate short videos and articles to his practice’s online patient portal for easy browsing. “They can graze and see what is important to them right now.”
Dr. James says she has referred patients to the Mayo Clinic for educational material but in general does not recommend one specific institution. She likes many articles featured in the ‘living with lupus’ section, a website affiliated with her research center, which also has an online education portal with information about clinical trials oriented to potential participants from under-represented communities.
Written content may work well for some patients, whereas others may prefer to watch patient education videos. Johns Hopkins’ website has both videos and downloadable written education sheets covering the main points about side effects of prescribed drugs, says Victoria Ruffing, RN-BC, the director of patient education at the Johns Hopkins Arthritis Center and adjunct faculty at the Johns Hopkins School of Nursing.
At the 2018 ACR/ARHP Annual Meeting, Ms. Ruffing and her colleagues showcased the newly created RheumTV, which offers a collection of videos on rheumatic conditions designed so patients can choose to watch one at a time or in a series. Rheumatologists who visited the display commented they had been trying to find videos and downloadable information to give patients, she says.
“People came by the booth and looked at what we had, and they were thrilled,” says Ms. Ruffing.
New videos are created every month or so to meet requests and inquiries from rheumatologists at Hopkins, but their reach extends beyond the hospital, says Ms. Ruffing. Rheumatology colleagues across the U.S. have remarked to Ms. Ruffing that they have used a series of videos from the Hopkins site to teach patients how to inject a biologic drug, she says.
“There are directions on our website on how to self-inject individual medications, which is helpful for some people,” says Ms. Ruffing. “For our own patients, even if we have taught them in person, we can send them home and say, ‘If you feel nervous, you can watch this video.’”
The ACR’s Simple Tasks campaign, which raises awareness about rheumatology, offers a variety of videos to inform patients about such topics as living with lupus and myths about rheumatic diseases. The website also promotes advocacy for patients living with rheumatic disease.
Other Online Sources
The written word accompanied by pictures or other graphics remains a popular format for patient education materials. Several other trustworthy websites exist where patients can further explore a medical concern or topic (see the sidebar, opposite).
Ms. Ruffing recommends the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), because it is a good source for nonbranded educational material. “NIAMS has publications you can order,” says Ms. Ruffing. “The materials are free, and it will ship the publications to you at no charge.” Alternatively, you can download and print the information from a computer.
“It has a fairly extensive number of publications,” says Ms. Ruffing about the NIAMS website. “They cover everything from gout to vasculitis to scleroderma to dermatologic conditions. The list of [materials] for the rheumatic diseases is pretty thorough.”
The Arthritis Foundation, Lupus Foundation of America and other disease-specific organizations also dedicate portions of their websites to educating patients and answering their questions. These websites, like the newly redesigned lupus.org, often incorporate social media elements that empower patients to learn from each other through stories of challenges and triumphs of living with a disease.
Another reasonable source is UpToDate, an online physician database that hospitals across the country invest in, says Dr. Martin. It is widely available to physicians, universities and hospitals; some doctors have the medical resource software embedded within their electronic medical record systems. “It has information to educate doctors on many topics, but it also has information on patient education,” says Dr. Martin, who recommends the section called Beyond the Basics for those patients who seek a deeper dive into their education quest.
“So if you were going to structure a way to give information to people, you might start with the ACR’s [patient fact sheets],” suggests Dr. Martin. “That’s very general—first blush, appetizer. Then you have some conversation around it. Then you might dispense to the patient one of these two layers of information, which you found on UpToDate.”
Patient education materials presented in languages other than English are also available, though likely not as ubiquitous or prevalent. The ACR has Spanish translations. The Mayo Clinic offers a wide variety of rheumatoid arthritis and other disease state materials on its foreign-language sites, says Ms. Blahnik.
At HSS, Dr. Lockshin and colleagues provide written, online and conference discussions in Spanish, Mandarin, Cantonese and other languages, he says. “In New York that mostly means Arabic, Russian, Creole/Haitian French,” notes Dr. Lockshin in an email. “This sort of service can be one-on-one translation or talks and workshops, usually in the communities with large numbers of non-English-speaking members, with simultaneous translation and Q&A from an English-speaking presenter.”
Cochrane Reviews is good source for curious patients looking to increase their knowledge on various aspects of rheumatic disease, says Dr. Martin. Its library has a series of reviews and some metanalysis on specific topics, and it provides plain language summaries for most of the reviews, as well as Spanish language materials, he says.
He and his colleagues involved in creating medication decision aids for patients often use Cochrane Reviews as a source. “Most people who create decision aids use the Cochrane Reviews as one of the evidence legs.”
During the 2015 National Hispanic Heritage month, NIAMS launched a Spanish-language website, where Spanish speakers can access free health information on conditions of bones, joints, muscles and skin. The NIAMS site also includes materials in three different Asian languages: Chinese, Korean and Vietnamese.
Most Wanted Answers
Ms. Ruffing and others at her institution have studied what people are looking for when they go to the rheumatology section of the Hopkins website. That’s another way, in addition to office consultations, to assess more precisely what patients want to learn more about, she says.
“I think disease state materials are in high demand,” says Ms. Ruffing. “The other common questions from patients include those on diet and exercise. People want to know if there are lifestyle changes to control symptoms or improve how they feel—intervention in addition to medications.
“The anti-inflammation diet is very popular right now,” notes Ms. Ruffing. “Patients want to know, ‘If I modify my diet, how will this help?’”
Questions from Dr. James’ patients cover similar topics: “My experience is that patients often are seeking very practical advice about living with lupus—topics like managing fatigue, information on diet/exercise, handling depression, coping skills for chronic disease, etc.,” she writes in an email.
Other inquires are seasonal. “As soon as spring starts, we get a lot of hits on Lyme disease,” says Ms. Ruffing. “That’s hugely popular. We have several videos from tick bite prevention to signs and symptoms of Lyme disease to treatment.”
Patients want answers to general questions about the course of their diagnosed disease, says Ms. Ruffing. They ask, “What is the natural course? What happens in 10 years? What happens in 20 years? Is there a cure?
“Those are the kind of [answers] it would be great to have in more languages, [answers to] those frequently asked questions,” she adds.
Written content may work well for some patients, whereas others may prefer to watch patient education videos.
Trustworthy patient education material derives from many sources, from well-known institutions to the experience and research of the individual rheumatologist. The challenge for patients can be knowing how to sift through questionable content more intended for marketing or promotion to find credible information that is nonbranded and as unbiased as possible.
“We all have our own inherent kind of biases, and I think the most important thing is to acknowledge this,” says Dr. Martin, “then offer people a choice of formats or depth of information, listen and give them the information they are looking for.”
Catherine Kolonko is a medical writer based in Oregon.
Here is a list of websites mentioned in this article or sponsored by disease-specific organizations or foundations. In addition, the National Institutes of Health offers Tip Sheets to help patients locate credible websites and evaluate health information sources.