Patients Weigh in on New Diagnostic Criteria

by Kristin Thorson, Fibromyalgia Network Editor
Posted: June 7, 2010

Nearly 10,000 people responded to a survey by the Fibromyalgia Network that revealed the American College of Rheumatology’s (ACR) new criteria to diagnose fibromyalgia.

In April of 2010, the ACR revealed their new diagnostic criteria.* Posted by the Fibromyalgia Network website on April 14, they caused quite a stir among patients and the general public.

The ACR hopes these new criteria will make it easier for doctors to diagnose the illness. Patients and others who responded to the survey offered mixed reviews. Doctors who developed the new criteria are hoping to standardize the process so all physicians can use the same procedures. They also did away with the tender point criteria, as it did a poor job of measuring symptom severity or charting the effectiveness of new treatments. These objectives are important since most fibro patients are being diagnosed and treated by rheumatologists and family practitioners or primary care physicians.

In the Fibromyalgia Network survey, almost all (97%) of the individuals responding were officially diagnosed with fibro or at least strongly suspected they have the illness. Of the 9,946 people responding, 51% (5,084) were diagnosed by a rheumatologist, and 17% (1,736) were diagnosed by their primary care physician/family doctor. Professionals who are at the forefront in providing ongoing treatment, however, are primary care physicians (37%) followed by rheumatologists (22%). The next closest type of doctor primarily in charge of your current fibromyalgia treatment are pain specialists at a mere 7%.

While nearly half of those responding to the survey felt the new criteria gave a fair and reasonable assessment of symptoms, patients gave us a whopping 3,400 comments debating the pros and cons.

One of the more popular critiques of the new diagnostic criteria told us that patients were confused when they were asked to answer questions based on “how they felt over the past week.” However, one of the three major criteria in scoring instructions state that “symptoms be present at a similar level for at least 3 months.”

“I think it is misleading that the Symptom Severity Score only is applicable to the ‛past week.’ If a person just had a good week, as I sort of did, then the score is lower than if they just came through a bad week, like I had the week before. The Symptom Severity Score should perhaps be the average of four (or more) weekly tabulations to be more accurate,” suggests one individual. Other patients commented that they experience more severe symptoms or flares through weeks or months, then followed by periods of less pain and symptoms, which could undermine a proper diagnosis.

More detailed information on the survey results including how many patients were actually diagnosed using the new tool will be printed in the July 2010 issue of the Fibromyalgia Network Journal. Read what the treatment experts have to say about the new criteria. Will they be using it, and do they think this checklist-type criteria will help the front-line physicians take on the challenge of diagnosing fibromyalgia? How helpful and accurate do they suspect the new criteria will be? Most importantly, how will these new guidelines affect your care and the image of fibromyalgia?

If you have not seen the new criteria, you are welcome to Take the Survey and offer your own comments.

* Wolfe F, et al. Arthritis Cares & Research 62:600-610, 2010.

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