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.
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Explore This IssueDecember 2015
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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.”
One of the most important things about the information gained from the studies, says Dr. Bingham, is that it opens up the conversation between physicians and patients. “Patients recognized they hadn’t always related changes in how they were feeling to their RA, and physicians found the information helped them understand how well patients were doing overall and even pick up [on] early flares,” says Dr. Bingham.
For Dr. El Miedany, one of the challenges of implementing this new metric and patient-centered approach in the clinical setting will be incorporating the patient-reported outcome measure questionnaires into standard clinical practice.
However, he stresses that having patients complete a questionnaire as part of the infrastructure of usual care, similar to routine monitoring of predictors of premature mortality, such as blood pressure or cholesterol in cardiovascular disease, will help patients prepare for their visit and improve communication between the doctor and patient.
Dr. Bingham noted that PROMIS measures are being embedded within many large electronic health records (EHR) systems. Providers can potentially have the system generate e-mails prompting patients to complete selected PROMIS measures between visits via a patient portal. The results are automatically entered into the EHR. “I think this ability to track how patients are feeling between visits will be incorporated into how we provide care in the future,” he says.
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 & function?’ —Clifton O. Bingham, III, MD
Another way patients can track their symptoms over time and report this information to their rheumatologists is through a site called Arthritis Power, the first patient-led, patient-generated and patient-centered research registry for arthritis.10 All the information patients enter about their health, including sleep, pain, flares or emotional health is tracked and stored in the registry.