Research to enable better management of health literacy skills

Health literacy skills determine disease burden and medication use in rheumatoid arthritis patients

Rheumatoid arthritis patients with favorable health literacy skills experience less disease burden and have better access to medications than patients with lower health literacy skills. This is one of the conclusions drawn by researcher Mark Bakker from Maastricht UMC+ who mapped the health literacy skills of hundreds of rheumatoid arthritis patients and investigated how healthcare providers can address this issue. On July 7, 2023, Bakker successfully defended his thesis.

Research had already described that individuals with limited health literacy skills are at a higher risk of poorer health. In recent years, researcher Mark Bakker from Maastricht UMC+ investigated what this means for rheumatoid arthritis patients, under the guidance of Annelies Boonen, professor of rheumatology at MUMC+, and Polina Putrik, a researcher in health policy at Maastricht University and GGD South Limburg.

Making decisions

Health literacy refers to personal qualities and support from the environment that are necessary to handle health information and services and to make decisions regarding healthcare and well-being. This includes decisions about healthcare itself and daily choices that impact health. Bakker emphasizes that health literacy skills encompass more than just reading and understanding medical information.

Mapping health literacy skills

Bakker assessed the health literacy skills of as many as 895 patients. These patients were receiving treatment for rheumatoid arthritis, spondyloarthritis, or gout at the Maasstad Hospital in Rotterdam, the Medisch Spectrum Twente in Enschede, or the Maastricht UMC+. Using a questionnaire, he determined health literacy skills across nine domains, such as social support, navigating the healthcare system, and reading and understanding health information. Bakker identified ten distinct patterns based on strengths and limitations across different domains. These ten patterns could broadly be summarized into three groups: 42% of the patients exhibited favorable health literacy skills, 42% experienced some limitations, and the remaining 16% had limitations in multiple health literacy domains. Within these groups, individual challenges, however, could still vary considerably.

Differences in disease burden and medication use

Subsequently, Bakker, along with fellow researcher Anne Gorter, focused on 122 patients to examine the implications of their health literacy skills on their perceived level of illness and the medications they use. "Interestingly," Bakker noted, "individuals with favourable health literacy skills reported experiencing fewer symptoms related to their rheumatoid arthritis. Regarding medication usage, we observed something remarkable: those with the most limitations in health literacy skills used more prednisone, an effective medication that can have unpleasant long-term side effects. Conversely, individuals with favourable health literacy skills used more biological disease-modifying antirheumatic drugs (DMARDs), which are generally more favorable in terms of long-term side effects compared to prednisone. It is challenging to explain these differences in disease burden and medication use, but it is clear that health literacy skills play a significant role. Moreover, health literacy skills were a better predictor than, for example, educational level."

Dealing with health literacy skills

Bakker also delved into how healthcare providers can better respond to the diversity of health literacy skills among their patients: "We observed that accurately assessing health literacy skills is not always straightforward. For instance, in about one out of five cases, the doctor did not know whether the patient had social support, while this is, in fact, crucial for treatment decisions and adherence to therapy." To explore how to improve responsiveness to health literacy skills, Bakker engaged in discussions with both healthcare providers and patients. "Both healthcare providers and patients had many good ideas to better address these challenges. Sometimes, it involves checking whether information has been properly understood, expressing mutual expectations, or adjusting verbal or written communication. Additionally, both healthcare providers and patients expressed the need for courses on this subject. Moreover, it is essential for healthcare providers to have knowledge about which institution or fellow healthcare professional is best suited to provide additional support to a patient, for instance, a social worker, psychologist, or dietitian."

Conversation tool

To implement concrete improvements in rheumatology care, further steps need to be taken. A first step was recently made possible by ReumaNederland, which granted funding for the implementation of a conversation tool for rheumatology nurses. These nurses conduct annual check-ups for patients with inflammatory rheumatic diseases, focusing on lifestyle, recommended vaccinations, participation in the workforce, and screening for other conditions. With the intended conversation tool, the nurses may be able to better assess the patient's health literacy skills and determine the most suitable care and support accordingly. The research will be led by Professor Annelies Boonen and researcher Polina Putrik.

Rheumatoid arthritis

In total, nearly 2 million Dutch people have a form of rheumatoid arthritis, a collective term for conditions affecting joints, muscles, and tendons. Approximately one-third of rheumatoid arthritis patients experience moderate to severe limitations as a result. Professor of Rheumatology Annelies Boonen supervised Bakker's research and emphasises its importance: "Rheumatoid arthritis often has a negative impact on daily functioning. As rheumatologists, we see patients for a long time, sometimes throughout their entire lives after diagnosis. We also witness their struggles with the disease. At the same time, we realise that in the limited time we have during a consultation, we may not always accurately assess how a patient can cope with our information and instructions, and thus take good care of their health. Mark Bakker has mapped this out well. I am hopeful that this represents a significant step towards more personalised rheumatology care, where treatments increasingly align with the patient's skills and preferences."

This article has previously been published by Maastricht UMC+.

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