Fibromyalgia & Chronic Pain LIFE Spring 2015, Issue 11 - Page 26

National Fibromyalgia & Chronic Pain Association/ Oregon Health & Sciences University Survey of Fibromyalgia Symptoms Other than Pain For two weeks in November 2013, NFMPCA members responded to a questionnaire designed by researcher and professor Dr. Robert Bennett of Oregon Health & Sciences University. The intent of this questionnaire was to provide information to the Food and Drug Administration (FDA) on common symptoms encountered by fibromyalgia patients, other than pain. This survey results were presented by Jan Chambers at the FDA Fibromyalgia Public Meeting on Patient-Focused Drug Development on March 26, 2014 (rescheduled from December 20, 2013), and in the public comments docket following the meeting. This survey provided a lot of new and important information regarding the suffering endured by people with fibromyalgia. To start with we will examine the basic demographic details. As noted, 3,201 NFMPCA members looked at the questionnaire. It was a rather daunting set of questions which would take 20 to 30 minutes to complete, thus it was not surprising that just over 1,000 would-be participants decided to go no further, or started the survey and gave up partway through. The good news is that 2,187 completed the survey. The majority of those surveyed said they had a diagnosis of fibromyalgia (i.e., only 19 patients reported another chronic pain condition as their primary problem). Recently, criteria were developed for use in surveys of this kind that enables an investigator 26  Fibromyalgia & Chronic Pain Life Sp r i n g 2 0 1 5 to get a good estimate as to who in fact does have fibromyalgia, and who does not (using the ACR 2010 Fibromyalgia Diagnostic Criteria). Of the original 2,168 patients who reported being diagnosed with fibromyalgia, responses from 1,492 (i.e., 69%) survey participants indicate they have fibromyalgia according to the 2010 ACR criteria. Interestingly, 10 of the 19 patients who did not report a diagnosis of fibromyalgia had a positive diagnosis according to the 2010 ACR criteria. Most of the participants completing the survey were middle-aged with a mean age of 53 years. The age distribution can be seen in the accompanying Age Distribution Table. There was a normal distribution of ages ranging from the late teens to 80-year-olds.