In a landmark study of 2009, a Yale University researcher and her coauthors observed that African Americans with rheumatoid arthritis (RA) were more concerned than their white counterparts about the risks of treatment, and less impressed by the benefits. "Improved awareness and understanding of how RA patients weigh treatment risks and benefits" should help to improve utilization of effective treatments, they suggested in Arthritis and Rheumatism.
A newer analysis of the question looked specifically at whether differences in perception of risk could account in part for the underutilization of disease-modifying antirheumatic drugs (DMARDs) despite their established effectiveness. The results suggest that, although negative experiences with treatment and perceptions about control of events do affect perceptions of risk, a simple matter of understanding may often underlie unwillingness to undergo a new treatment for RA.
The team from the Michigan State University College of Human Medicine mailed surveys to RA patients in a rheumatology practice in Grand Rapids, asking about their experience with DMARDs as well as about numerous measures of mood and quality of life. They also asked respondents about a hypothetical scenario in which they might consider switching DMARDs. Among the final sample of 1009 patients, 6.5% were members of a minority group, and 8.8% had low health literacy.
Factors such as the extent of disease and happiness or depression did not greatly affect willingness to try a new DMARD, although regret with a previous DMARD choice was a strong predictor. However, health literacy (independent of education or other demographic features) was a significant predictor of both willingness to take a new DMARD and of risk perception in general.
Be alert for any kind of cognitive difficulty, whatever the source, and consider "extending the time of deliberation beyond the constraints of the office visit" by using decision aids, rheumatologist Richard W. Martin and his coworkers suggested, when they presented their results at the American College of Rheumatology annual meeting. (Abstract #382) (Martin is author of a review on communicating information about adverse effects of rheumatic disease treatments published last month in Rheumatic Diseases of North America.)
Other studies presented at the ACR meeting assessed why African American patients with osteoarthritis are less willing than whites to undergo joint replacement surgery. One analysis involving patients in the prospective Multicenter Osteoarthritis Study (MOST), drawn from populations in Alabama and Iowa, found that age and depression may explain some of the disparity, as well as geography, curiously: Fewer Alabama patients were willing to consider knee replacement.
Researchers at the University of Pittsburgh and the University of Pennsylvania looked at the same question a different way, analyzing the clear difference between preferences about total knee replacement among 514 white and 285 African American patients with knee pain and radiographic evidence of knee osteoarthritis. The degree of social support did not seem to explain the racial difference, they found (Abstract #908), but matters involving trust in doctors and the medical system,were significant elements of the decision (Abstract #909). Also important specifically to African Americans were knowledge and expectations about the procedure.
Health literacy, knowledge, expectations: A common element in all of these studies is communication. To judge from the work of a different team based at the Philadelphia VA Medical Center (Abstract #2441), rheumatologists are simply speaking over the heads of many patients, to judge from the written materials they have available to provide.
The study examined the readability and suitability of patient education materials for rheumatic diseases from sources as highly regarded as the National Institutes of Health, the ACR, the Arthritis Foundation (AF), the Mayo Clinic, and UpToDate. Virtually all were written at well above the sixth-grade level recommended for materials intended for the general public.
Only five of the 23 resources were judged superior and suitable for all audiences:
• the Arthritis Foundation on rheumatoid arthritis,
• the ACR, AF, and UpToDate Basics on osteoarthritis, and
• patient education material on lupus from the ACR.