How Rheumatologists Can Boost Patient Understanding of Educational Materials

You’re meeting with a female patient newly diagnosed with rheumatoid arthritis (RA). You review diagnosis basics, medications to take and how often to take them, and you share some written material about the disease. The patient says “yes” when you ask if she understands the written material and your instructions. However, does the patient truly understand?

A Question of Comprehension

Patient education with the use of printed materials may seem simple on the surface, but it’s actually complex—and can have serious consequences if a patient does not understand what they read about their rheumatic disease.

A misunderstanding of patient education material may result from poor reading literacy or poor health literacy skills. A survey released in late 2013 from the Program for the International Assessment of Adult Competencies revealed that more than one in six adults have low literacy reading skills; other seminal works in adult literacy have found percentages closer to one in three adults. Health numeracy, a component of health literacy, is the ability to comprehend simple numerical concepts, such as dosage and frequency of medications. The same survey of adult competencies found that one-third of U.S. adults have significant deficiencies in numeracy.

Low or limited health literacy can affect comprehension of your patient education materials—and health outcomes. A recent Arthritis Care & Research study in a large group of rheumatoid arthritis patients reported that health literacy was linked to functional status more strongly than prednisone use, smoking history, biologic use and even educational level.¹

“Limited health literacy is an incredibly large problem in the United States and is overrepresented in the elderly and ethnic minorities,” says study co-author Joel M. Hirsh, MD, Division of Rheumatology, Denver Health Medical Center, Division of Rheumatology, University of Colorado School of Medicine, Denver.

Another challenge with patient-geared materials is the reading level. Patient materials that are written at too high a reading level—determined by such factors as syllables per word and words per sentence—could actually seem like a foreign language to patients, even if it’s normal reading for a rheumatologist. Layout and the use of graphics (or the lack thereof) also affect how easy it is for patients to understand written information. In fact, an October 2013 study that evaluated 23 patient-geared resources on four different rheumatic diseases found that all of the resources had a readability level above the eighth-grade level—higher than the sixth-grade level commonly recommended for patient materials.²

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.

Rheumatologists are always welcome to share ideas for new topics to cover on the site, says Senkbeil.

There’s also solid, easy-to-follow information from the Arthritis Foundation, says Dr. Schumacher.

He also believes it would be useful to explore ways to use social media to answer patients’ clinical questions and provide reliable answers from rheumatologists.

Although other resources for patient education materials are available online, they must be considered with caution.

“There is much misinformation on the Internet, and we spend many a visit reviewing that and correcting patients’ understanding of the issues at hand,” says Gilbert Gelfand, MD, CareMore, Cerritos, Calif.

“The Internet can be challenging for patients [as they try] to synthesize the information,” says Dr. Rhee. “Physicians play an important role in translating information and applying it to a patient’s individual situation.”

If you use material created by another source, make sure to review it closely before distribution to identify parts that are most relevant to your practice. For example, Dr. Schumacher has come across material about gout that focuses on the diagnosis and epidemiology—but what he really needs to convey to patients is that they need to take medications indefinitely and that their uric acid level will be checked regularly.

If there are certain parts of the material you want patients to focus on, highlight and underline or circle them, says health literacy educator Jann Keenan, Ed.S., president, The Keenan Group Inc., Ellicott City, Md. Put the patient’s name at the top, and encourage them to keep the paper where they keep other important, frequently reviewed papers.

Reinforcement of your practice’s written materials with nurses or other staff members is also crucial. “It’s important to make sure the patient reads and understands the material that you’re giving,” Dr. Schumacher said. However, many patients don’t want to seem in the dark in front of their doctors, so they’ll act like they understand. Interventions, such as a nurse calling a patient every month after discharge from the hospital or at some other regular interval period will clarify what patients think they should be doing vs. what they are actually doing.

Creating Your Own Materials

There still may be times when you need to create your own education materials for patients, perhaps due to unique needs among your patient population or information gaps you just can’t seem to bridge online.

When that’s the case, there are a number of resources online that provide further guidelines and suggestions (see sidebar).

In your actual document, Keenan recommends including lots of white space and visuals. If the document states, “Drink plenty of water,” show a picture of an 8 oz. serving of water. Or if it says to take a certain number of pills at a certain frequency, depict that visually; you want to avoid dosing misunderstandings, such as “Take this pill twice a day,” and leave the patient thinking they can take one dose at 8 a.m. and the other at 8:05 a.m.

Use a 14-point font—helpful to the elderly or visually impaired—and include no more than seven lines of text per paragraph. Keenan also recommends no more than five inches of text per line, to help keep ample white space.

With any material that you design, staff members play a role in checking comprehension frequently and with open-ended questions, says Keenan. You can also find information online about the teach-back method, in which patients “teach” their educator about what they learned.

Vanessa Caceres is a freelance medical writer in Bradenton, Fla.

References

1. Caplan L, Wolfe F, Michaud K, et al. Health literacy is strongly associated with functional status among rheumatoid arthritis patients: A cross-sectional study. Arthritis Care Res (Hoboken). 2013 Sep 10. doi: 10.1002/acr.22165. [Epub ahead of print].
2. Rhee RL, Von Feldt JM, Schumacher HR, et al. Readability and suitability assessment of patient education materials in rheumatic diseases. Arthritis Care Res. 65:1702–1706.