The eighth-grade-or-above reading level occurred even when researchers removed from their resources the longer names of diseases, medications and the word rheumatology, said study co-author Rennie Rhee, MD, rheumatology fellow, Perelman School of Medicine, University of Pennsylvania, Philadelphia.
Then there’s the challenge of a patient comprehending education materials as they deal with the barriers that the rheumatic disease itself may present, be it extreme fatigue, vision problems, crooked fingers (affecting the ability to hold paper in their hands), or complex clinical explanations.
“Educating patients on rheumatic diseases is particularly difficult because many rheumatic diseases are both complex and rare,” Dr. Rhee says. “Rare diseases also receive less attention in mainstream media, and so many people have not heard of our diseases, requiring greater effort on the part of the patient, with aid from his or her rheumatologist, to understand the condition.”
Just what is a rheumatologist to do to boost patient understanding of educational materials?
Using What’s Available
First, don’t reinvent the wheel, says H. Ralph Schumacher Jr., MD, professor of medicine, University of Pennsylvania. There’s a good deal of prewritten educational materials available, and with careful choosing, you can find what’s right for your patients, says Dr. Schumacher, who co-authors some educational materials available online.
The American College of Rheumatology has more than a hundred patient fact sheets available at http://www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients. The sheets are typically written at a seventh-grade level, and they’re updated each year, says Erin Latimer, director of public relations at the ACR.
Many of the sheets have also been translated into Spanish, says Bonny Senkbeil, public relations senior specialist with the ACR, who manages the ACR’s patient education.
The fact sheets are the most viewed part of the ACR site, attracting 100,000 views a month, Latimer says. “That’s mostly patients accessing them,” she says. However, it is very common for rheumatologists to print the sheets and distribute them to patients as needed. Rheumatologists are free to use the fact sheets with patients or use text from them in other documents, so long as they credit the ACR, Latimer says.
The ACR is planning to expand its educational materials to make them even more patient friendly and to include disease- and medication-related disease and lifestyle topics, such as, “I have rheumatic disease. Now what?” says Latimer. The first set of new topics should be ready by June. If the new topics are successful, they will expand along similar themes.
