The need for a consensus-based definition of a flare is evident from another study result that found a lack of agreement among patients and physicians about when a patient is in a flare. According to Dr. Bartlett, data from a longitudinal early RA cohort in Canada suggest that doctors agree with patients about 70% of the time when a patient is experiencing a severe flare. However, in the 30% of cases where there is lack of agreement, in 15%, patients think they are experiencing a flare when they are not, and in 15% the doctor says a patient is experiencing a flare, when they are not.5
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Explore This IssueDecember 2015
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Another surprise from the study, according to Dr. Bartlett, was how little clinicians know about the nature of flares and how they impact patients.5 Although the study found a lot of overlap in what physicians and patients thought were important symptoms of flares, patients described a lot more things that were important to them than physicians recognized.
Along with trouble with mobility and moving joints, patients also emphasized fatigue and said that this was often one of the first signs of a flare coming. Many felt fatigue interfered more with quality of life than pain. “One of the first things that patients told us was that when they start to go into a flare … they … stop everything other than work to conserve energy,” says Dr. Bartlett.
“Depending on the severity of the flare, I may disengage from social activity and will do anything to keep working,” says Ms. Leong.
Dr. Bingham points out that symptoms, including fatigue, that clinicians routinely address in assessing disease activity are important to patients because they affect such everyday activities as brushing their hair, opening doors and being able to fulfill important roles as a parent. “These are the things patients care about and change when they are flaring [that] they want us to measure,” he says, adding that this shows that the current metrics used for RA (e.g., disease activity score [DAS]) in clinical practice and research really do not reflect many of the things patients care about.
Lessons learned from that study, says Dr. Bartlett, are that patients are pretty good at managing their flares (e.g., by eliminating unnecessary activity, sleeping more, increasing medications as agreed with their doctors) and that they seek out their physician when self-management strategies no longer work.
‘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.