Fibromyalgia Patients Reading Self-Help Journals and in Internet Self-Help Groups:
Are They Different from Patients in Clinical Practice? Robert Katz1, Kaleb Michaud2,3, and Frederick Wolfe3
1Rush Medical Center, Chicago, IL; 2University of Nebraska Medical Center, Omaha, NE; 3National Data Bank for Rheumatic Diseases, Wichita, KS
Conclusions
Persons with fibromyalgia identified by self-referral and self-help participationhave characteristics that differ substantially from those of patients seen inphysicians’ clinics, principally by having more symptoms and greater symptomseverity, more depression, and more psychiatric illness. These observationssuggest 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 additionalinformation and care through participation in self-help groups, includingfibromyalgia organizations and Internet groups. Patients in such groups are vocalabout fibromyalgia symptoms and care, and about medico-legal consequences andcorrelates of fibromyalgia. We investigated the characteristics of such persons andcompared them with other fibromyalgia patients in medical practice.
METHODS. Patients (N =1831) diagnosed with fibromyalgia and referred bytheir rheumatologists for participation in a long-term outcome study offibromyalgia were compared with 509 persons with fibromyalgia who self-referred for study participation. Self-referrals (SR) learned about the study fromthe Internet and patient-based medical magazines. Participants were compared attheir initial study enrollment. Results below are reported as unadjusted values.Significance tests results, significant at p <0.05, represent linear and logisticregression, adjusted for age and sex.
RESULTS. SR participants were younger (48.6 vs. 54.4 years), less likely to bemarried (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.$43,864 p=0.156). Despite younger age and greater education, they had higherBMIs (30.8 vs. 29.4). SR participants reported significantly more functionalimpairment on the Health Assessment Questionnaire (HAQ) (1.6 vs. 1.3) and theSF-36 Physical Component Score (27.4 vs. 28.3). However, they were less likelyto have received Social Security Disability awards (28.4% vs. 37.0%). SRparticipants had more abnormal scores for pain (7.1 vs. 6.0), global severity (5.5vs. 4.9), symptom intensity scale (6.6 vs. 6.0) and SF-36 mental component score(39.4 vs. 42.7), but not for sleep disturbance (5.6 vs. 5.8) or fatigue (6.8 vs. 6.5 p= 0.062); and reported more comorbid conditions (3.2 vs. 2.8) and somaticsymptoms (17.2 vs. 13.5) There were major differences in psychiatric illness,including lifetime depression (77.4% vs. 56.4%), lifetime psychiatric illness(78.2% vs. 57.2%), and current psychiatric illness (58.7% vs. 37.0%). SR subjectsmade more emergency room visits (odds ratio (OR) 1.3 (95% C.I. 1.0-1.6),p=0.025), but did not have increased outpatient, drug, or total direct medical costs($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 ofpatients seen in physicians’ clinics, principally by having more symptoms andgreater symptom severity, more depression, and more psychiatric illness. Theseobservations suggest that such participants represent a subset of patients withfibromyalgia, and may not be representative of fibromyalgia patients generally.
Introduction
Many persons diagnosed with fibromyalgia seek additional information and carethrough participation in self-help groups, including fibromyalgia organizations andInternet groups. Patients in such groups are vocal about fibromyalgia symptoms andcare, and about medico-legal consequences and correlates of fibromyalgia.
The National Data Bank for Rheumatic Diseases (NDB) enrolls patients from twosources: physician practices via physician referral and patient self-referral. This allowsNDB to study a larger group of fibromyalgia patients than would be availableprimarily by rheumatologist referral alone. As noted above, self-referrals come frompatients 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 besystematically different from patients referred from rheumatology practices, withsome overlap. We investigated the characteristics of such persons and compared themwith other fibromyalgia patients in medical practices.
This investigation taps into important questions about fibromyalgia severity, inparticular whether results of studies that come primarily from specialist clinics arerepresentative of fibromyalgia in the community. In addition, it addresses the questionof generalizability of data that comes from advocacy groups. While our studyprovides no right or wrong answers, it does offer a peak into differences that haveclinical 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 ofsymptoms, we evaluated patients at their first semi-annual questionnaire followingenrollment. There were 1,831 patients diagnosed with fibromyalgia and referred bytheir rheumatologists and 509 persons with fibromyalgia who self-referred for studyparticipation. Patients were evaluated with validated assessment questionnaires.
Table 1. Demographic Differences
Results
The results shown above are unadjusted. After adjustmenet for age andsex, self-referred participants were younger, less likely to be married, andmore likely to have a college education (p = 0.091). They did not differ inhousehold income. Despite younger age and greater education, they hadhigher BMIs.
Study results (means and percents) are reported without further adjustment as toage, sex, or other variables in order to better understand group differences.Significance tests results, significant at p <0.05, however, represent results ofanalyses using linear and logistic regression, adjusted for age and sex.
Table 2. Clinical Differences
SR participants reported significantly more functional impairment on the HealthAssessment Questionnaire and the SF-36 Physical Component Score (Table 2)However, they were less likely to have received Social Security Disabilityawards. SR participants had more abnormal scores for pain, global severity,symptom intensity scaleand SF-36 mental component score, but not for sleepdisturbance or fatigue (p = 0.062); and reported more comorbid conditions andsomatic symptoms (See Figures 1 and 2). There were major differences inpsychiatric illness, including lifetime depression, lifetime psychiatric illness, andcurrent psychiatric illness. SR subjects made more emergency room visits (oddsratio (OR) 1.3 (95% C.I. 1.0-1.6), p=0.025), but did not have increasedoutpatient, drug, or total direct medical costs.