‘The point of measuring fatigue is not to treat a symptom of RA, but to treat the disease itself better.’ —Clifton O. Bingham, III, MD
“Many times, patients are able to successfully manage flares through a series of creative behavioral strategies, but there is, of course, a point at which self-management no longer works,” she says Overall, Dr. Bartlett says the research offers a clearer indication of the prevalence and burden of flares and that it can have an impact on patients’ quality of life.
From this and ongoing work through OMERACT, the investigators arrived at a consensus of five common core domains for the measurement of flares: pain, physical function, fatigue, participation in activities and stiffness (in press).5-8 Using these measurements, the group is now collecting data on patients who experience flares to understand the range of each domain (e.g., how much pain, how great the fatigue).
Results of the final version of the flare measure will be presented at the May 2016 OMERACT meeting and open to ratification by OMERACT attendees.
Patient-Centered Care Approach to Management
Building on the work done through the OMERACT collaboration, Drs. Bingham and Bartlett are collaborating on several projects funded through the national Patient-Centered Outcomes Research Institute (PCORI), a major funding agency in the U.S.
In their first project, initiated in 2011, the investigators evaluated how patient-reported outcome information could be integrated within the clinical setting.9
A major focus was to understand whether the generic Patient-Reported Outcome Measurement Information System (PROMIS) measures could reflect the symptoms and impact that patients with RA described. Developed by the National Institutes of Health, PROMIS offers precise, reliable ways to evaluate patient-reported symptoms across disease (see PROMIS Instruments, above left).
The overall project goals, Dr. Bingham says, were to see if more patient-centered information could be gathered in the context of a clinical visit, to see what the information could tell physicians about people with RA, and to determine how that information would be interpreted by patients and their physicians and whether it could be used in making treatment decisions.
Results of the project, published in September 2015, provide preliminary evidence of the validity of PROMIS measures to assess RA symptoms and their impact on patients.9
“The measurement system of PROMIS is highly precise in the ways it can measure symptoms and impacts across the spectrum of RA disease activity,” says Dr. Bingham.