Transcript Document

Fibromyalgia Patients Reading Self-Help Journals and in Internet Self-Help Groups:
Are They Different from Patients in Clinical Practice?
Robert
1Rush
Medical Center, Chicago, IL;
2University
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 selfreferred 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. 54.4 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.
$43,864 p=0.156). Despite younger age and greater education, they had higher
BMIs (30.8 vs. 29.4). SR participants reported significantly more functional
impairment on the Health Assessment Questionnaire (HAQ) (1.6 vs. 1.3) and the
SF-36 Physical Component Score (27.4 vs. 28.3). However, they were less likely
to have received Social Security Disability awards (28.4% vs. 37.0%). SR
participants had more abnormal scores for pain (7.1 vs. 6.0), global severity (5.5
vs. 4.9), symptom intensity scale (6.6 vs. 6.0) and SF-36 mental component score
(39.4 vs. 42.7), but not for sleep disturbance (5.6 vs. 5.8) or fatigue (6.8 vs. 6.5 p
= 0.062); and reported more comorbid conditions (3.2 vs. 2.8) and somatic
symptoms (17.2 vs. 13.5) There were major differences in psychiatric illness,
including lifetime depression (77.4% vs. 56.4%), lifetime psychiatric illness
(78.2% vs. 57.2%), and current psychiatric illness (58.7% vs. 37.0%). SR subjects
made more emergency room visits (odds ratio (OR) 1.3 (95% C.I. 1.0-1.6),
p=0.025), but did not have increased outpatient, drug, or total direct medical costs
($US 5,628 vs. 5,472).
CONCLUSIONS. Persons with fibromyalgia identified by self-referral and selfhelp 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.
Kaleb
2,3
Michaud ,
and Frederick
of Nebraska Medical Center, Omaha, NE;
Introduction
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.
1
Katz ,
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.
3
Wolfe
3National
Data Bank for Rheumatic Diseases, Wichita, KS
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
Variable
Table 1. Demographic Differences
Variable
Age (years)
Sex (% male)
Married (%)
Education (years)
0-8 (%)
8-11 (%)
12 (%)
13-15 (%)
16 or > (%)
College graduate (%)
Total Income (US dollars)
Body mass index
Physician Referred
Mean
S.D.
or %
54.4
11.9
5.5
73.3
13.3
2.1
1.3
5.2
38.8
29.6
25.1
25.1
43,864
28,666
29.4
7.2
Physician Referred
Mean
S.D.
or %
Self-Referred
Mean
S.D.
or %
48.6
11.4
3.5
68.2
13.5
2.4
2.6
3.7
31.0
31.4
31.2
31.2
46,650 29,687
30.8
8.2
Work disability
Disabled (self reported) (%)
Social security disability ever (%)
Psychological Status
Depression (ever) (%)
Psychiatric disorder ever (%)
Psychiatric disorder now (%)
Symptoms (See Figure 1 and 2)
Symptom count (0-37)
Severity variables
HAQ (0-3)
Pain (0-10)
Global severity (0-10)
Fatigue (0-10)
Sleep disturbance (0-10)
Symptom intensity scale (0-10)
Physical component score (SF 36)
Mental component score (SF 36)
Direct Medical Costs
Total cost ($)
Drug costs (%)
Self-Referred
Mean
S.D.
or %
23.5
37.0
29.1
28.5
56.4
57.2
37.0
77.4
78.2
58.7
13.5
6.4
17.2
6.8
1.3
6.0
4.9
6.5
5.8
6.0
28.3
42.7
0.6
2.5
2.5
2.7
3.0
2.2
8.7
12.0
1.6
7.1
5.5
6.8
5.6
6.6
27.4
39.4
0.6
2.2
2.4
2.6
3.1
2.1
8.1
11.9
2,736
429
4,145
1180
2,815
334
4112
630
Methods
We evaluated 2,304 patients with fibromyalgia. These patients completed detailed, 28page 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.
0
90.6
88.8
80.0
77.5
68.1
66.8
55.8
48.2
41.1
38.9
22.3
21.9
21.3
14.4
13.6
20
40
60
Percent
80
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.
Symptoms in Self-referred compared with MD-referred patients
Symptom prevalence
Fatigue
Muscle pain or weakness
Joint pain or swelling
Cognitive problems
Headache
Stroke/paresthesias
Abdominal pain
Easy bruising
Shortness of breath
Rash
Hair Loss
Anorexia
Reynaud's
Rash (other)
Fever
Seizures 0.0
Results
100
Stroke/paresthesias
Cognitive problems
Muscle pain or weakness
Fever
Headache
Rash (other)
Anorexia
Rash
Abdominal pain
Raynauds
Fatigue
Easy bruising
Hair Loss
Joint pain or swelling
Shortness of breath
Seizures
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. 1.0-1.6), p=0.025), but did not have increased
outpatient, drug, or total direct medical costs.
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.
0.0
1.0
2.0
Odds Ratio
3.0
4.0