When measuring fatigue, for example, the computer algorithm draws on 90 questions in the PROMIS item bank to find the right set of questions (often four to six) that can precisely identify fatigue level.
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Explore This IssueDecember 2015
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“This is a new way of measuring things,” says Dr. Bingham, adding that results are able to quantify for physicians not only how much fatigue patients are experiencing, but also how it is affecting their overall quality of life.
Because the measures are very sensitive, even when measuring very low or high levels of a symptom, this approach offers new insight into RA. For example, even when patients are in remission or experiencing low disease activity, PROMIS measures indicate that a subset was experiencing debilitating levels of fatigue that affected their ability to work and participate in life roles. Many patients also told the investigators that severe fatigue was one of the earliest signs of a major RA flare.
“The question becomes, ‘Are we managing people as well as we can, or do we need to think about also measuring other key symptoms that really affect how people feel and function?’” Dr. Bingham says.
Treat the Whole Patient
An answer to that question comes from those who live with RA daily. “Patients with rheumatoid arthritis are whole people,” says Ms. Leong. “Just to address the flare is not to address the whole person and the family, work and social context in which we live.”
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.