As a patient advocate, along with her many advisory and research roles, including president and CEO of Healthy Motivation, Ms. Leong says that the work with OMERACT and Drs. Bingham and Bartlett is aimed at activating patients with RA to get engaged with their own care. “We know that activated, engaged patients have better outcomes and [fewer] flares and manage their health better,” she adds.
Anne Lyddiatt, a patient living with RA who participates in the OMERACT group and research projects, says having a better way to measure RA flares would lead to better self-management by patients. “Rheumatologists can do blood work for indications, but often, by the time we get [to their office], things have changed so they are reliant on patient reporting,” Ms. Lyddiatt says.
Having a better way to measure flares would help patients know how to better manage their flares, for example, by reducing activities, following their rheumatologist’s orders for medications (often an increase or additional medications) or deciding whether they need to see their rheumatologist.
In the Hands of Rheumatologists
Dr. Bingham says the ultimate goal of OMERACT’s work in developing patient-centered measures in RA is to get information to clinicians so they can better understand how RA symptoms and flares affect their patients and then incorporate the findings into treatment decisions.
However, he acknowledges that rheumatologists can get frustrated when they hear about the importance of measuring a symptom, such as fatigue, because of the perceived lack of treatment for it. But ongoing data suggest that fatigue tracks with other measures of RA disease activity and is often an early warning sign of impending flares.
Patients are pretty good at managing their flares (e.g., by eliminating unnecessary activity, sleeping more, increasing medications as agreed with their doctors), & they seek out their physician when self-management strategies no longer work.
“The point of measuring fatigue is not necessarily to target this particular symptom, but to ensure the RA is being optimally controlled,” Dr. Bingham says. When RA is well controlled, fatigue returns to levels seen in the general population, he notes.
“The point of measuring fatigue is not to treat a symptom of RA, but to treat the disease itself better,” he says, adding that the hope is to improve fatigue with better management of RA.
Dr. Bingham says that if rheumatologists and other healthcare providers can better understand the patient experience by measuring it more precisely, “then we have great opportunities to combine this with other clinical and laboratory information and really come up with a way of treating both the disease and the person living with the disease.”