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Potential Body of Knowledge for Rheumatoid Arthritis and Spondyloarthritis Grows

October 29, 2019
Survey results note the need for more continuing education among providers and patients.

with Jeffrey Fudin, PharmD, and Don L. Goldenberg, MD

As with any chronic condition, patient education can empower individuals with rheumatoid arthritis (RA) and spondyloarthritis (SpA) to manage their disease and improve their quality of life. However, clinicians need to first assess patients’ knowledge as part of the education process, according to research conducted1by Catherine Beauvais, MD, of Saint-Antoine Hospital’s Rheumatology Department in Paris, France, and her colleagues.

Recommendations for patient education have been published by the European League Against Rheumatism (EULAR). “However, to date, there is no consensus on which knowledge is essential for patients with IA (inflammatory arthritis),” the researchers wrote in their published report.

To identify essential information for patients’ self-care, the researchers reviewed current literature and used a Delphi process to survey rheumatologists, other healthcare professionals, and patients. They narrowed a list of 322 knowledge items for rheumatoid arthritis and 265 items for spondyloarthritis to 69 and 59, respectively, addressing both pharmacological and non-pharmacological treatments.

Concepts considered core to patient education regarding pharmacological issues included: understanding of symptoms and disease course; managing conventional and biological disease-modifying drugs (cDMARDs and bDMARDs); and managing symptomatic medications, such as glucocorticoids, NSAIDs, opioids, and injections. In addition, an understanding of how to manage comorbidities, such as osteoporosis and cardiovascular disease, was found to be important.

Survey results note the need for more continuing education among providers and patients. (Source: 123RF)

Key knowledge areas related to non-pharmacological treatment included: managing pain and fatigue; following a home exercise program; incorporating physical activity; dealing with family, social, and professional relationships; and participating in self-management programs. In addition, “dealing with healthcare professionals [was] considered important by participants,” the researchers noted.

Many existing knowledge questionnaires from organizations such as EULAR were developed “before the biologics era or before new issues such as comorbidities ad physical activity had become prominent,” the researchers said. In the current survey, there were fewer domains related to disease presentation, the researchers noted. Instead, “patients’ pathway, relation with healthcare professionals, shared decision-making, interest of patient education, and professional issues” were ranked as important in the Delphi results.

Why Define Knowledge Areas

“Having an excellent understanding of disease management can cultivate healthcare personnel to engage in discussions around appropriate treatment options for their patients,” emphasized Jeffrey Fudin, PharmD, an adjunct associate professor at Albany College of Pharmacy and Health Sciences, clinical pharmacy specialist in Albany, NY, and Co-Editor-at-Large of PPM. “From a patient’s perspective, especially with chronic diseases such as RA and SpA, an excellent understanding of their disease is helpful for them to recognize physical limitations, engage in safe and effective strengthening and conditioning exercise, foster healthy lifestyles, and make various decisions including but not limited to medication treatment options and work-related activities,” he said.

The value of knowledge areas extends beyond rheumatology to other acute and chronic diseases, “including appropriate perioperative management for various conditions requiring surgery,” he added.

Useful Information, Within Limits

“I think this is a useful study, particularly since it incorporates both professional and patient opinions on important healthcare knowledge,” says Don L. Goldenberg, MD, rheumatologist and professor emeritus at Tufts University School of Medicine and a member of PPM’s Editorial Advisory Board.“During the past decade, there has been greater awareness on the importance of understanding what items patients are most concerned about.”

However, Dr. Goldenberg noted that the findings could be more user-friendly. “The article is difficult to digest for the average clinician, heavily weighted to statistics and the Delphi process,” he said. “I would like to see a more practical analysis, such as a ranking of what the most important topics were and what the differences were between patient versus healthcare providers’ responses.”

Dr. Fudin, too, finds limitations in the published study, but agrees with the value of establishing knowledge areas. “Identifying specific knowledge areas requires that a baseline of skills and knowledge be established by multiple healthcare disciplines and patients alike,” he said.

However, to maximize the benefits of developing educational guidelines, he proposed that a more diverse group of healthcare providers are needed. “The fact that most healthcare providers surveyed included those associated with rehab medicine (physiotherapists, occupational therapists, and nurses) was wholly inadequate,” he said. “[It] is extremely important that these three groups were included, but many more healthcare providers with variable perspectives could have significantly enhanced the outcome data. Only after knowledge deficits are identified can targeted and meaningful educational strategies be developed to improve knowledge outcomes.”

Dr. Goldenberg emphasized that clinicians may effectively engage patients in their care by setting aside time for education during a visit and asking patients what information they have about their condition, and where they found it. “Always listen carefully,” he said, “and have educational material available, including recommendations for reputable websites that you believe every patient needs.”

Dr. Fudin noted that the outcomes of the French study are not necessarily generalizable outside the study group, although he suspects that “we would see similar results within the US.”

“Furthermore, the healthcare system in France is very different from the for-profit system we have in the US, and that could also have an influence on various knowledge domains,” he added.

Next Steps

Both Drs. Goldenberg and Fudin agree with the study team that more research is needed to determine the most appropriate essential knowledge areas for arthritis patients.

“It would be interesting to validate these knowledge items by additional studies,” the researchers said in their published study. In the meantime, however, “the present study provides a consensual corpus of essential knowledge for patients with RA and SpA in the self-management of their IA,” they concluded.

“After expanding on the survey process, there needs to be a study that looks at short- and long-term outcomes for healthcare providers, and separately for patients and their caregivers after employing appropriate and comprehensive education to each group,” observed Dr. Fudin, who said that he would like to see survey results specifically around bDMARDs in the US with consideration to high costs and accessibility. He added, “It would be especially interesting to survey practicing healthcare provider knowledge of DMARDs within the US against healthcare clinicians in an administrative role employed by managed care.”

Last updated on: October 29, 2019
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