I frequently work alongside folks with rheumatoid arthritis (RA). When things aren’t going well and the disease is kicking someone’s butt, I often hear the word “flare” used in conversation. For example: “I’m miserable today, experiencing a flare!” or, “Not sure if it’s the change in season…but I’m really flaring right now,” or, “I’m having a major flare this week after all the travel.” But what exactly does “flare” mean? Does the meaning differ from the clinician to the patient? In order to better understand the experience of those who deal with RA daily, I took a look at existing research to find what defines flare from the patient perspective. I’d thought that flare simply referred to an unusually bad episode of synovitis (inflammation of the membrane lining the joints). But I quickly discovered that it’s much more complicated and even means different things to different people.
Two recent studies of flare examined the patient perspective. One was conducted by members of the international RA Flare Group of OMERACT.* It was led by a lovely academic psychologist I know named Susan Bartlett who splits her time between the Johns Hopkins and McGill University Schools of Medicine. Bartlett and her colleagues wanted to find which signs and symptoms make up a flare from both the patient and medical perspective, since it’s a term used by patients and physicians alike. Bartlett’s study engaged 125 patients and 108 healthcare professionals in a consensus process to identify the “core domains” (i.e., signs and symptoms) of an RA flare (1).
In order to identify the signs and symptoms of flare, the research team first had to define flare to study participants. To patients, flare was described as “the point where your arthritis is so active that you need to either ask for a review, or a change, or increase in medication.” To healthcare professionals, it was defined similarly as “RA [that] is so active that the patient needs to ask either for a visit or call to the doctor or a change or increase in medication.” The researchers found consensus that flare included signs and symptoms across the following eight domains:
- Function (e.g., ability to do everyday activities like climbing stairs or getting out of a car)
- Swollen joints
- Tender joints
- Participation (e.g., ability to do regular social activities like leaving the house or visiting a friend)
- Patient global assessment (overall rating of one’s own health: “Considering all the ways in which illness and health conditions may affect you at this time, please indicate how you are doing on a scale from 0 for Very Well to 10 for Very Poorly”)
- Self-management (self-care behaviors to reduce symptoms)
A ninth domain, fatigue, was identified by patients as very important in defining flare, but healthcare professionals didn’t view it as essential. Perhaps not surprisingly, doctors and other professionals rated traditional clinical assessments, like physician’s global assessment and lab results, as more important than patients did.
In a second study also conducted by OMERACT members, Sarah Hewlett and her colleagues held focus groups with 67 RA patients across five countries to explore patients’ perspective of flare(2). Again flare was defined as triggering a review of an RA patient’s current medication(s). The study found that patients use the term “flare” for the following five scenarios:
- A single symptomatic joint;
- Increased symptoms within normal variation;
- Increased symptoms from external causes, such as stress;
- Self-induced increase in symptoms from over-exertion (NOTE: patients in the study viewed this flare scenario as having a specific cause and being manageable); and
- Increased symptoms that seem to come out of nowhere (“unprovoked”) and are persistent, unmanageable and lead to seeking medical help.
For the fifth (and worst) flare scenario, Hewlett’s study also identified themes that are part of the patient’s flare journey.
- Experiencing symptoms and early warning signs (intense pain that is constant and persistent, fatigue, flu-like symptoms, physical/cognitive shut-down and social withdrawal)
- Self-managing worsening symptoms (e.g., by slowing down, resting, using heat/cold, or increasing medication, often without medical advice)
- Defining symptoms as uncontrollable flare
- Seeking medical help when symptoms are not able to be controlled or contained
The study identified two additional themes: individual context and uncertainty. Individual context means that flare symptoms look different for different people. One RA patient said in a focus group, “This is what I find frustrating when I come and see the rheumatologist sometimes […] I can’t convey what I’ve felt […] because I haven’t fitted into that lovely, neat little box” (pg. 74).
Feeling uncertain about whether it’s a true flare was also expressed as an important reality of the experience. One participant shared, “But you never know when a flare starts whether it’s going to be a mini thing that in a week will disappear or whether it’s the ‘Grrrrr’, the killer” (pg. 74).
Reading these studies opened my eyes to the range of symptoms and experiences associated with a flare from the perspective of individuals with RA. And that’s the beauty of research. It consolidates many voices and experiences into a single story that is universal and can be shared easily with others. (At least that’s the goal).
I’m now curious to hear from others about this. Do the findings in the two studies above reflect your experience? Is there anything else you think people need to understand about the RA patient perspective of flare? Are there ways to use the health tracker function in Arthritis Power to anticipate a flare or help others understand? Please post your comments below to let me know.
*OMERACT (Outcome Measures in Rheumatology) is a consortium of international health professionals and patient research partners who are interested in outcome measures in rheumatology. OMERACT does important work developing standardized endpoints in randomized controlled trials and longitudinal observational studies. It is linked to the Cochrane Collaboration Musculoskeletal Review Group where outcomes endorsed by OMERACT are then recommended for use in Cochrane Systematic Reviews (Note: I’ve highlighted Cochrane in other blog posts). In short, OMERACT makes it easier to conduct rheumatology research that can be compared or combined with other studies, thus accelerating our understanding of musculoskeletal conditions.
(1) Bartlett, S.J., Hewlett, S., Bingham, C.O., Woodworth, T.G., Alten, R., Pohl, C., Choy, E.H., Sanderson, T., Boonen, A., Bykerk, V., Leong, A., Strand, V., Furst, D.E., Christensen, R. & The OMERACT RA Flare Working Group. (2012). Identifying core domains to assess flare in rheumatoid arthritis: an OMERACT international patient and provider combined Delphi consensus. Annals of the Rheumatic Diseases, 71, 1855-1860. doi:10.1136/annrheumdis-2011-201201
(2) Hewlett, S., Sanderson, T., May, J., Alten, R., Bingham, C.O., Cross, M., March, L., Pohl, C., Woodworth, T., & Bartlett, S.J. (2012). ‘I’m hurting, I want to kill myself’: rheumatoid arthritis flare is more than a high joint count—an international patient perspective on flare where medical help is sought. Rheumatology, 51, 69-76. doi:10.1093/rheumatology/keq455