Fibromyalgia Patients Reading Self-Help Journals and in Internet Self-Help Groups: Are They Different from Patients in Clinical Practice? Robert Katz 1, Kaleb Michaud 2,3, and Frederick Wolfe 3 1 Rush Medical Center, Chicago, IL; 2 University of Nebraska Medical Center, Omaha, NE; 3 National Data Bank for Rheumatic Diseases, Wichita, KS Conclusions Persons with fibromyalgia identified by self-referral and self-help participation have characteristics that differ substantially from those of patients seen in physicians’ clinics, principally by having more symptoms and greater symptom severity, more depression, and more psychiatric illness. These observations suggest that such participants represent a subset of patients with fibromyalgia, and may not be representative of fibromyalgia patients generally. Abstract PURPOSE. Many persons diagnosed with fibromyalgia seek additional information and care through participation in self-help groups, including fibromyalgia organizations and Internet groups. Patients in such groups are vocal about fibromyalgia symptoms and care, and about medico-legal consequences and correlates of fibromyalgia. We investigated the characteristics of such persons and compared them with other fibromyalgia patients in medical practice. METHODS. Patients (N =1831) diagnosed with fibromyalgia and referred by their rheumatologists for participation in a long-term outcome study of fibromyalgia were compared with 509 persons with fibromyalgia who self- referred for study participation. Self-referrals (SR) learned about the study from the Internet and patient-based medical magazines. Participants were compared at their initial study enrollment. Results below are reported as unadjusted values. Significance tests results, significant at p <0.05, represent linear and logistic regression, adjusted for age and sex. RESULTS. SR participants were younger (48.6 vs years), less likely to be married (68.1% vs. 73.3%), and more likely to have a college education (31.2% vs. 25.1%, p = 0.091). They did not differ in household income ($46,650 vs. $43,864 p=0.156). Despite younger age and greater education, they had higher BMIs (30.8 vs. 29.4). SR participants reported significantly more functional impairment on the Health Assessment Questionnaire (HAQ) (1.6 vs. 1.3) and the SF-36 Physical Component Score (27.4 vs. 28.3). However, they were less likely to have received Social Security Disability awards (28.4% vs. 37.0%). SR participants had more abnormal scores for pain (7.1 vs. 6.0), global severity (5.5 vs. 4.9), symptom intensity scale (6.6 vs. 6.0) and SF-36 mental component score (39.4 vs. 42.7), but not for sleep disturbance (5.6 vs. 5.8) or fatigue (6.8 vs. 6.5 p = 0.062); and reported more comorbid conditions (3.2 vs. 2.8) and somatic symptoms (17.2 vs. 13.5) There were major differences in psychiatric illness, including lifetime depression (77.4% vs. 56.4%), lifetime psychiatric illness (78.2% vs. 57.2%), and current psychiatric illness (58.7% vs. 37.0%). SR subjects made more emergency room visits (odds ratio (OR) 1.3 (95% C.I ), p=0.025), but did not have increased outpatient, drug, or total direct medical costs ($US 5,628 vs. 5,472). CONCLUSIONS. Persons with fibromyalgia identified by self-referral and self- help participation have characteristics that differ substantially from those of patients seen in physicians’ clinics, principally by having more symptoms and greater symptom severity, more depression, and more psychiatric illness. These observations suggest that such participants represent a subset of patients with fibromyalgia, and may not be representative of fibromyalgia patients generally. Introduction Many persons diagnosed with fibromyalgia seek additional information and care through participation in self-help groups, including fibromyalgia organizations and Internet groups. Patients in such groups are vocal about fibromyalgia symptoms and care, and about medico-legal consequences and correlates of fibromyalgia. The National Data Bank for Rheumatic Diseases (NDB) enrolls patients from two sources: physician practices via physician referral and patient self-referral. This allows NDB to study a larger group of fibromyalgia patients than would be available primarily by rheumatologist referral alone. As noted above, self-referrals come from patients seeking information on the Internet, fibromyalgia self-help groups, fibromyalgia patient magazine, and other sources. We hypothesized that patients seeking additional information on their own would be systematically different from patients referred from rheumatology practices, with some overlap. We investigated the characteristics of such persons and compared them with other fibromyalgia patients in medical practices. This investigation taps into important questions about fibromyalgia severity, in particular whether results of studies that come primarily from specialist clinics are representative of fibromyalgia in the community. In addition, it addresses the question of generalizability of data that comes from advocacy groups. While our study provides no right or wrong answers, it does offer a peak into differences that have clinical and societal importance. Methods We evaluated 2,304 patients with fibromyalgia. These patients completed detailed, 28- page semiannual questionnaires regarding their illness. To determine comparability of symptoms, we evaluated patients at their first semi-annual questionnaire following enrollment. There were 1,831 patients diagnosed with fibromyalgia and referred by their rheumatologists and 509 persons with fibromyalgia who self-referred for study participation. Patients were evaluated with validated assessment questionnaires. Table 1. Demographic Differences Results The results shown above are unadjusted. After adjustmenet for age and sex, self-referred participants were younger, less likely to be married, and more likely to have a college education (p = 0.091). They did not differ in household income. Despite younger age and greater education, they had higher BMIs. Study results (means and percents) are reported without further adjustment as to age, sex, or other variables in order to better understand group differences. Significance tests results, significant at p <0.05, however, represent results of analyses using linear and logistic regression, adjusted for age and sex. Table 2. Clinical Differences SR participants reported significantly more functional impairment on the Health Assessment Questionnaire and the SF-36 Physical Component Score (Table 2) However, they were less likely to have received Social Security Disability awards. SR participants had more abnormal scores for pain, global severity, symptom intensity scaleand SF-36 mental component score, but not for sleep disturbance or fatigue (p = 0.062); and reported more comorbid conditions and somatic symptoms (See Figures 1 and 2). There were major differences in psychiatric illness, including lifetime depression, lifetime psychiatric illness, and current psychiatric illness. SR subjects made more emergency room visits (odds ratio (OR) 1.3 (95% C.I ), p=0.025), but did not have increased outpatient, drug, or total direct medical costs.