Engaging Patients to Live Well with Chronic Disease
When first diagnosed with a chronic condition, such as diabetes, heart disease, or rheumatoid arthritis, patients can often feel frightened or overwhelmed. Their physicians may provide information or education about the condition, but there is no way to know whether the patient actually understands their symptoms, how to manage them, or what questions to ask. Complex health information can be confusing to most patients, but it is particularly challenging for patients with low health literacy. Patient education materials are traditionally written at reading levels far above best practice recommendations for health literacy.
Becky C., a patient living with rheumatoid arthritis, was part of a group who helped to design the content and style of ACP’s Live Better with Rheumatoid Arthritis guide. Becky used her own experiences as a basis for what she felt patients need. “Being diagnosed with any chronic disease is frightening, at the very least, and I was frightened, indeed. I think a guide like this would have been helpful to me because it shows patients living active lives and smiling. This alone would have encouraged me to spend some time reading the guide.” Knowing what her major questions were after being diagnosed, Becky was able to suggest important topics to cover in the guide. “So many questions: How was the pain going to be managed? What if pain or range of motion limits my ability to accomplish daily activities? What if I have a reaction to medicine? What about herbal medicines and vitamins—which ones are safe for me to take?” ACP used this feedback to develop content that was relatable and practical for patients.
In addition to rheumatoid arthritis, ACP has produced a series of self-management guides for diabetes, weight loss, COPD, and heart disease to support patients in managing their chronic conditions. The guides are developed by a multidisciplinary development team of experts, including physicians, behavioral scientists, educators, nurses, pharmacists, health educators, and design experts, who spend months working with patients and providers to integrate critical medical, behavioral, and educational, content into the guides. The end result is a tool that successfully communicates with patients both visually and through words. The guides have been praised by both patients and providers alike.
The text used in the guides is developed with multiple rounds of edits to achieve a 3rd- to 7th-grade reading level. Because patients reported a strong preference for visual cues, photographs are used throughout the guides to convey portion sizes and to depict real people successfully managing their disease. J.B., a diabetic patient, uses the guides to help him make small modifications to his diet. “I like that the book shows me pictures of what needs to be on my plate. If my doctor tells me I need to lose weight to help my diabetes, I will need the photos to show me what I should eat. With a book with just words I would not be able to get a good idea of how to change my diet.” Dr. Rios, a Spanish-speaking diabetes provider who uses Viviendo con Diabetes with patients, praises the guide’s ability to provide healthy habit recommendations in simple steps that won’t overwhelm or intimidate his patients. “The book (guide) explains exercise very well in a way that contains good examples. The photos are also helpful, especially because they show normal-looking people who our patients can identify with instead of fitness models. I think this makes the idea of exercising much less intimidating for patients. Many of the exercise ideas are very accessible to our patients, such as walking or mowing the lawn. I am happy to see that the book (guide) does not suggest that joining a gym or going to expensive fitness classes are the only ways to get exercise.”
Research shows that patients want to understand what they should do to manage their condition, rather than information about the disease itself. In addition, focus groups revealed that it isn’t enough to tell patients to make lifestyle changes—patients need help with developing a strategy for change that they can implement. M.M., a patient who received the Make It Happen–Lose Weight Guide, uses her guide to keep her on track and focused. “The weight loss book (guide) really helped me because I keep it in my kitchen and I can look at it when I am planning my meals and grocery shopping. I have to look back at the portion size pages a lot because that is one thing I have trouble with. We eat such big meals and the book (guide) shows us that to be healthy we need to be eating a much smaller amount”.
The guides have also been especially helpful in supporting the information conveyed in health promotion and diabetes education classes. M.S., a nurse who uses the diabetes and weight loss guides for health education activities, notes, “When they get to take home the book (guide), it reinforces what they have learned from their provider in their health education class.”
To order any of ACP’s patient self-management guides or other patient education resources, go to www.acponline.org/patients_families/products/ or call Member and Customer Service at 800-523-1546, ext. 2600 or 215-351-2600. (M–F, 9 a.m.–5 p.m. EST)
A special thanks to the patients, nurses, and physicians who shared their feedback and experiences with the self-management guides and to the staff at CommunityHealth in Chicago, Illinois, for their assistance with this article.