Patient Self-Assessments May Reliably Identify Disease Flare in Early Rheumatoid Arthritis

HSS Authors:
Vivian P. Bykerk, BSc, MD, FRCPC

Non-HSS Authors:
Johns Hopkins University:
Clifton O. Bingham III, MD

Cardiff University School of Medicine, UK:
Ernest Choy, MD, FRCP

Mount Sinai Hospital, Toronto:
Juan Xiong, PhD

CHUS - Sherbrooke University, Quebec:
Gilles Boire, MD, MSc

University of Manitoba, Winnipeg:
Carol A. Hitchon, MD, FRCPC, MSc

University of Western Ontario:
Janet E. Pope, MD, MPH, FRCPC


When a patient with rheumatoid arthritis (RA) experiences an increase in symptoms, the patient is often said to be having a “flare”. While the term “flare” is widely used, it does not mean the same thing to every patient, nor every doctor.

Technically, the term “flare” means the patient has an increased level of disease that requires a change in treatment. In everyday practice, however, patients may experience symptoms or discomfort that are not actually a result of increased disease, yet, both the patient and doctor may call it a flare.

Further, there is little agreement among practitioners about how to reliably identify a flare, including what should be the precise clinical measurements or standards. What’s more, patients and doctors do not always agree on whether a specific situation actually is a flare.

Need for Standardized Terms

The wide range of definitions, perceptions, and patient conditions that can be indicated by this one basic – and frequently used – term, “flare” does not help advance accurate sharing of clinical knowledge or scientific efforts aiming to develop new treatments. To help change these field-wide disparities, HSS is part of vital international research seeking to create standardized reporting tools and terminology that can be consistently used to mean the same thing when describing any patient’s individual condition.

Recently, the collaborators examined how a specific list of RA symptoms could be reliably used to identify clinical flares. The team sought to determine:

    1) the extent of agreement between patients and their rheumatologists in identifying a flare
    2) how actual clinical and patient-reported outcomes (PROs) concurred with flare status

They evaluated a list of RA symptoms including Pain, Function, Stiffness, Participation, Coping and Fatigue. Both doctor’s findings and each patient’s own global assessment of self management were included. The symptoms were taken from the Canadian early arthritis cohort study, in collaboration with an international initiative, the Outcome Measures in Rheumatology (OMERACT) group, who in conjunction with the FDA have long sought to improve patient outcomes measurements in Rheumatology.

512 Patients and Their Doctors Rate the Same Experience

Using the medial records, including patient self-assessment reports, of 512 patients already enrolled in a large study called CATCH (Canadian early ArThritis CoHort), the team had access to both pre and post flare data for comparison and analysis. 75% of the patient group studied were female, ranging in age from 39 to 67, with a mean age of 53.

The patients had completed an OMERACT-based set of preliminary flare questions (PFQs).The PFQs asked patients if they felt they were having a flare. Then, patients rated their severity of their flare and answered questions about the extent of their pain, ability to function, degree of stiffness and fatigue, as well as participation, coping, and the global assessment of their disease.

The patients also identified tender and swollen joints (TJC and SJC) with 42 possible joints that could be mentioned. The doctors of these same patients also reported whether they considered the patient to be experiencing a flare, and also performed a count of TJC and SJC.

Doctors and Patients Do Not Always Agree

During the study, 149 patients - or 29% - reported a flare.Patients and their doctors agreed about flare status about 72% of the time. When this agreement occurred, clinical measurement of symptoms were at their highest. The highest doctor-patient agreement on whether the experience was actually “a flare”, came when both believed it was not. That happened 280 times out of the 512 experiences used in the study. (See chart below for fuller details.)

For purposes of the study, any patient that considered themselves as having a flare, were deemed “flare patients”. Patient Reported Outcomes were significantly different between flare and non-flare patients. The clinical changes from the patient’s previous visits as shown on two standard measurements of RA activity were higher in flare vs. non-flare patients. Those standard measurements were the Disease Activity Score (DAS28) and Crohn’s Disease Activity Index (CDAI).

Patients reporting a flare did have clinical indices reflecting worsening disease activity. However, flare patients reported higher TJC and SJC than their doctors did. Further, the agreement was modest when the patients and MDs agreed about flare status, but only poor when patient and doctor disagreed.

This new study provides a foundation for moving forward in helping establish field-wide agreement on what the term “flare” covers and the basis of an outcome measure of flare in rheumatoid arthritis. More research can help clarify criteria, including the discrepancies between patients and providers in flare assessment.

Ratings of Flare Severity and Patient Reported Outcomes by Patient/MD Concordance

Study presented by HSS at the 2012 Annual Meeting of the American College of Rheumatology in Washington, DC.

HSS Authors:
Vivian P. Bykerk, BSc, MD, FRCPC

Non-HSS Authors:
Johns Hopkins University:
Clifton O. Bingham III, MD

Cardiff University School of Medicine, UK:
Ernest Choy, MD, FRCP

Mount Sinai Hospital, Toronto:
Juan Xiong, PhD

CHUS - Sherbrooke University, Quebec:
Gilles Boire, MD, MSc

University of Manitoba, Winnipeg:
Carol A. Hitchon, MD, FRCPC, MSc

University of Western Ontario:
Janet E. Pope, MD, MPH, FRCPC


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