Validation of a Systemic Lupus Activity Questionnaire (SLAQ) for population studies.

The goal of this work was to develop an economical way of tracking disease activity for large groups of systemic lupus erythematosus (SLE) patients in clinical studies. A Systemic Lupus Activity Questionnaire (SLAQ) was developed to screen for possible disease activity using items from the Systemic Lupus Activity Measure (SLAM) and tested for its measurement properties. The SLAQ was completed by 93 SLE patients just prior to a scheduled visit. At the visit, a rheumatologist, blinded to SLAQ results, examined the subject and completed a SLAM. Associations among SLAQ, and SLAM (omitting laboratory items) and between individual items from each instrument were assessed with Pearson correlations. Correlations between pairs of instruments were compared using Student's t-tests. The mean score across all 24 SLAQ items was 11.5 (range 0-33); mean SLAM without labs was 3.0 (range 0-13). The SLAQ had a moderately high correlation with SLAM-nolab (r = 0.62, P < 0.0001). Correlations between patient-clinician matched pairs of items ranged from r = 0.06 to 0.71. Positive predictive values for the SLAQ ranged from 56 to 89% for detecting clinically significant disease activity. In studies of SLE, symptoms suggesting disease can be screened by self-report using the SLAQ and then verified by further evaluation.

Outcomes of total hip and knee replacement: preoperative functional status predicts outcomes at six months after surgery.

OBJECTIVE: To determine whether patients with knee or hip osteoarthritis (OA) who have worse physical function preoperatively achieve a postoperative status that is similar to that of patients with better preoperative function. METHODS: This study surveyed an observational cohort of 379 consecutive patients with definite OA who were without other inflammatory joint diseases and were undergoing either total hip or knee replacement in a US (Boston) and a Canadian (Montreal) referral center. Questionnaires on health status (the Short Form 36 and Western Ontario and McMaster Universities Osteoarthritis Index) were administered preoperatively and at 3 and 6 months postoperatively. Physical function and pain due to OA were deemed the most significant outcomes to study. RESULTS: Two hundred twenty-two patients returned their questionnaires. Patients in the 2 centers were comparable in age, sex, time to surgery, and proportion of hip/knee surgery. The Boston group had more education, lower comorbidity, and more cemented knee prostheses. Patients undergoing hip or knee replacement in Montreal had lower preoperative physical function and more pain than their Boston counterparts. In patients with lower preoperative physical function, function and pain were not improved postoperatively to the level achieved by those with higher preoperative function. This was most striking in patients undergoing total knee replacement. CONCLUSION: Surgery performed later in the natural history of functional decline due to OA of the knee, and possibly of the hip, results in worse postoperative functional status.

The natural history of exercise-induced anaphylaxis: survey results from a 10-year follow-up study.

BACKGROUND: Exercise-induced anaphylaxis (EIA) is a unique physical allergy that is triggered by exertion, the clinical spectrum and modifying factors of which have been previously studied. At the time of initial description, it was postulated that other factors contributed to this disorder. OBJECTIVE: We sought to determine the clinical course and potential modifying factors in EIA. METHODS: In 1993, we conducted a cross-sectional analysis of 671 individuals with exercise-associated symptoms for more than a decade using a validated 75-item questionnaire. Subjects met criteria for EIA if they had anaphylactic symptoms, including hypotension or upper airway obstruction, urticaria, or angioedema with physical exertion but without a passive increase in core body temperature. RESULTS: Of 365 (54%) questionnaire respondents, 279 (87%) met criteria for EIA (199 females and 80 males). At the time of study entry, subjects with EIA (mean age, 37.5 years; range, 13 to 77 years) had an average of 10.6 years of symptoms, which were most frequently triggered by aerobic activities such as jogging or brisk walking (78% and 42%, respectively). On average, subjects reported that the frequency of attacks had decreased (47% of subjects) or stabilized (46% of subjects) since onset. One hundred (41%) subjects reported being completely free of attacks in the past year. Subjects reduced their attacks by avoiding exercise during extremely hot or cold weather (44%), avoiding ingestion of certain foods before exercise (37%), and restricting exercise during their allergy season (36%) or humid weather (33%). The most common pharmacologic agents used to manage symptoms were H1 antagonists (56%) and/or epinephrine (31%). However, 28% used no treatment at all. CONCLUSION: EIA is an episodic condition in which the frequency of attacks tends to stabilize or decrease over time. Improvement appears to result from individual modification of exercise and avoidance of known environmental and ingestible precipitants.

The relationship of socioeconomic status, race, and modifiable risk factors to outcomes in patients with systemic lupus erythematosus.

OBJECTIVE: To study the relationship of race, socioeconomic status (SES), clinical factors, and psychosocial factors to outcomes in patients with systemic lupus erythematosus (SLE). METHODS: A retrospective cohort was assembled, comprising 200 patients with SLE from 5 centers. This cohort was balanced in terms of race and SES. Patients provided information on socioeconomic factors, access to health care, nutrition, self-efficacy for disease management, health locus of control, social support, compliance, knowledge about SLE, and satisfaction with medical care. Outcome measures included disease activity (measured by the Systemic Lupus Activity Measure), damage (measured by the SLICC/ACR damage index), and health status (measured by the SF-36). RESULTS: In multivariate models that were controlled for race, SES, center, psychosocial factors, and clinical factors, lower self-efficacy for disease management (P < or = 0.0001), less social support (P < 0.005), and younger age at diagnosis (P < 0.007) were associated with greater disease activity. Older age at diagnosis (P < or = 0.0001), longer duration of SLE (P < or = 0.0001), poor nutrition (P < 0.002), and higher disease activity at diagnosis (P < 0.007) were associated with more damage. Lower self-efficacy for disease management was associated with worse physical function (P < or = 0.0001) and worse mental health status (P < or = 0.0001). CONCLUSION: Disease activity and health status were most strongly associated with potentially modifiable psychosocial factors such as self-efficacy for disease management. Cumulative organ damage was most highly associated with clinical factors such as age and duration of disease. None of the outcomes measured were associated with race. These results suggest that education and counseling, coordinated with medical care, might improve outcomes in patients with SLE.

Assessment of systemic lupus erythematosus disease activity by medical record review compared with direct standardized evaluation.

OBJECTIVE: Clinical studies of systemic lupus erythematosus (SLE) often necessitate assessment of previous disease activity, which is sometimes only possible by retrospective evaluation of information from the medical record. Using the Systemic Lupus Activity Measure (SLAM), the present study compared an assessment of disease activity obtained by chart abstraction with a direct clinical assessment. METHODS: A chart SLAM was obtained using information abstracted from the clinic notes of 46 patients with SLE who were being followed up at a referral center. Chart SLAM scores were compared with SLAM scores derived from an independent assessor's direct clinical evaluation. RESULTS: Direct SLAM and chart SLAM scores were correlated (r = 0.67 by Spearman's rank correlation, P = 0.0001). Chart review scores for disease activity tended to be lower, but to an inconsistent degree, reflecting both under- and overestimation of disease activity. The overall misclassification rate on a 3-category scale (mild, moderate, or severe activity) was 59%. CONCLUSION: Although chart SLAM scores were highly correlated with direct SLAM scores, misclassification of disease activity by chart review cannot be rectified. Thus, in research, medical record review should not be used as a proxy for the direct SLAM, nor should it be considered comparable with clinical assessments in the analysis of disease activity.

Risk factors for early work disability in systemic lupus erythematosus: results from a multicenter study.

OBJECTIVE: To study the risk factors for early work disability in systemic lupus erythematosus (SLE). METHODS: A sample of 159 SLE patients who had been employed at some time since diagnosis was drawn from a multicenter study of outcome in SLE. Disease activity, organ damage, education, income, source of health insurance, and work-related factors were measured in a standardized interview. Work disability was defined by patient self-report of not working because of SLE. The outcome measure was current work status. Seven patients were excluded from the analysis because their choice not to work was unrelated to SLE. RESULTS: An average of 3.4 years after diagnosis, 40% had quit work completely, and job modification was substantial. Univariate analysis (chi-square and t-test) showed that significant predictors of early work disability included having a high school education or less, receiving Medicaid or having no health insurance, having a job which required more physical strength, having an income below poverty level, and having greater disease activity at diagnosis. In multivariate models, significant predictors were education level (P = 0.0004), higher physical demands of the job (P = 0.0028), and higher disease activity at diagnosis (P = 0.0078). Race, sex, cumulative organ damage at diagnosis, and disease duration were not significant. CONCLUSION: Early work disability in SLE is strongly associated with some sociodemographic factors that might be amenable to intervention.

Risk factors for adult Still's disease.

OBJECTIVE: To assess risk factors for adult Still's disease (ASD). METHODS: A matched case-control study of 60 patients with ASD and 60 same sex siblings closest in age was conducted. Subjects were recruited from cohorts in Eastern Canada, Pittsburgh, and the Arthritis, Rheumatism, and Aging, Medical Information Systems (ARAMIS). A questionnaire was used to obtain data on demographic characteristics, education, income, occupation, exposure to toxic substances, stress, and medical history. RESULTS: 116 patients with ASD were identified, of which 104 participated. 86 identified same sex siblings, of which 60 replied. When compared to same sex siblings, ASD patients were similar with respect to education and occupation but had a trend to higher median income. There were no significant associations of ASD with smoking, alcohol consumption, individual toxic substances, vaccination, blood transfusion, minor or major surgery, pregnancy, or diet in the year preceding disease onset. There were no significant associations with tonsillectomy or adenoidectomy, appendectomy, asthma, hay fever, allergy shots, or pregnancy at any time preceding the onset of disease. There was a statistically nonsignificant increase in a history of exposure to coal dust [odds ratio (OR) 3.0; 95% confidence interval (CI) 0.30 to 28.84], in allergy preceding the onset of disease (OR 2.67; 95% CI 0.71 to 10.05), and in oral contraceptive use in the year preceding onset (OR 2.00; 95% CI 0.18 to 22.06). Stressful life events (OR 2.56; 95% CI 1.18 to 5.52) in the year preceding onset was significantly associated with increased risk for ASD. This positive association should be treated with caution unless confirmed by a separate study. CONCLUSION: This exploratory study of risk factors for ASD draws attention to stress as a potentially important risk factor, while likely excluding a considerable number of others.

Objectively measuring physical ability in elderly persons: the Physical Capacity Evaluation.

The Physical Capacity Evaluation, a performance measure of functional capabilities comprised of 13 tasks simulating those used in activities of daily living, was tested on 289 community-dwelling elderly people and compared against a widely used self-report measure of function, the Health Assessment Questionnaire. Factor analysis identified one dominant component in each instrument. Internal consistency reliability (Cronbach's alpha) was .90 for both instruments. Global disability (Health Assessment Questionnaire) and function (Physical Capacity Evaluation) scores were correlated -.74. One-week retest reliabilities on 58 subjects were .94 for the Physical Capacity Evaluation and .95 for the Health Assessment Questionnaire. The Physical Capacity Evaluation is a valid and reliable measure of physical performance for use with elderly people.

A controlled study of the long-term prognosis of adult Still's disease.

PURPOSE: To assess the long-term prognosis of patients with adult Still's disease for physical and psychological disability, pain, social functioning, social support, medication use, formal education, occupation, time lost from work, and family income, and to contrast these results with those of same-sex sibling controls. PATIENTS AND METHODS: Patients were recruited from medical center-based cohorts in Pittsburgh and Eastern Canada and from a national survey of rheumatologists. Patients and same-sex sibling controls completed the Health Assessment Questionnaire for physical disability, the psychological and social function domains of the Arthritis Impact Measurement Scales, and the Interpersonal Skills Evaluation List questionnaire for social support, and replied to questions on medication use, formal education, occupation, time lost from work, and family income. RESULTS: One hundred four of 111 eligible adult Still's patients (94%) provided data. They identified 86 same-sex sibling controls, of whom 60 (70%) participated. The mean duration of adult Still's disease was 10 years. Approximately half of patients continued to require medication even 10 years after diagnosis. Patients had significantly higher levels of pain, physical disability, and psychological disability when compared with the controls. However, the levels of pain and physical disability were low compared to patients with other rheumatic diseases. Educational achievement, occupational prestige, social functioning and support, time lost from work, and family income were similar for both patients and controls. CONCLUSIONS: Despite causing disability, pain, and, in many, the need for long-term medication, patients with adult Still's disease are resilient. The disease did not interfere with educational attainment, occupational prestige, social functioning and support, time lost from work, or family income.

The independence and stability of socioeconomic predictors of morbidity in systemic lupus erythematosus.

OBJECTIVE: We studied the relationship between systemic lupus erythematosus (SLE) morbidity and socioeconomic status (SES) at 5 centers. METHODS: Ninety-nine patients who met American College of Rheumatology criteria for SLE were randomly sampled at each center, balancing by race and insurance status. Subjects were interviewed for current and past SES factors, such as insurance, occupation, employment, education, and income. SLE disease activity was measured by the SLE Activity Measure (SLAM). RESULT: Higher education, private insurance/Medicare, and higher income were associated with less disease activity at diagnosis. Controlling for SES, race, and center, the best predictors of less active disease at diagnosis were private insurance/Medicare (P = 0.002) and higher education (P = 0.007). From the time of diagnosis to the study visit (mean 3.5 years), insurance, income, and employment status changed for a significant number of subjects (37%, 16%, and 21%, respectively). CONCLUSION: Private insurance or Medicare and higher education are associated with less active disease at diagnosis of SLE. Health insurance, income, and employment status are unstable measures of socioeconomic status and may explain the variability in conclusions of previous studies on the role of SES in SLE.

Management of work disability. Resources for vocational rehabilitation.

OBJECTIVE: To review the state-federal vocational rehabilitation (SF-VR) system and its utilization by persons with rheumatic conditions. METHODS: SF-VR system instruction manuals, and literature on rheumatology rehabilitation, work disability, and rehabilitation counseling were reviewed. National and Massachusetts state SF-VR system data on persons with "arthritis and rheumatism" were analyzed. RESULTS: The SF-VR system is used by a small proportion of persons with rheumatic diseases. Fifty-two percent of clients with arthritis are employed after receiving services. CONCLUSION: Although evidence indicates that VR services for persons with rheumatic conditions improves their chances for reemployment, the SF-VR system is underutilized.

Psychosocial adjustment in juvenile arthritis.

Psychosocial adjustment in 102 children with arthritis, ages 4-16, and their families was assessed by parents, who completed the Child Behavior Checklist (CBCL) and Profile of Mood States (POMS). On average, parental distress (POMS) was lower than reference norms. POMS distress was correlated with children's behavioral problems (r = .41) but not with children's social competence (r = .15). General linear models explained 25% of the variance in CBCL behavioral problem scores. Older age was associated with more behavior problems in males, but not females. Disease severity and disease activity were also associated with behavioral problems. Although 27% of the variance in CBCL social competence could be explained, no single predictor variable was especially strong. Poorer social competence was associated with older age and shorter disease duration. Teenagers, especially those with recent onset and those with mild disease activity, may be at increased risk for psychosocial maladjustment.

Strategies for reducing excess morbidity and mortality in blacks with systemic lupus erythematosus.

The epidemiology of systemic lupus erythematosus suggests that the excess morbidity and mortality in blacks with the disease is related to lower socioeconomic status. Poverty and factors associated with poverty are powerful predictors of poor outcome in a variety of chronic diseases, and lupus appears to be no exception. A body of studies in other illnesses suggests ways to neutralize, at least partially, the disadvantages of lower socioeconomic status, even though the root causes of poverty may be insurmountable. These include improving access to quality health care; targeting educational programs to promote recognition and understanding of the disease and the comorbid conditions that affect outcome; implementing programs to improve self-monitoring and adherence to medical regimens; developing opportunities to facilitate homemaking, childrearing, and working outside the home; and applying psychosocial interventions to enhance self-confidence and social support. Improved access to quality health care may actually lead to a decrease in health care costs.

Evaluation of Social Security disability in claimants with rheumatic disease.

We compared the Social Security Administration's (SSA) judgment of disability with uninvolved rheumatologists' evaluations of ability to work. With the cooperation of the SSA, 52 new disability claimants who alleged rheumatoid arthritis, osteoarthritis, or systemic lupus erythematosus were identified at the beginning of their claim. At the same time that their claim was being formally reviewed, they had a standardized examination by an independent rheumatologist who was not involved with their care, and they had a standardized test of observed performance. Rheumatologists' judgments of ability to work were compared with the SSA judgments. Rheumatologist and SSA judgments were in agreement for 35 of the 52 claimants (67%). All 11 claimants who met or equaled the SSA medical evaluation criteria were judged work-disabled by the rheumatologist. Of 27 judged able to work by the SSA, the rheumatologist judged 11 to be unable. Agreement between the SSA judgment of residual functional capacity and observed performance was no more than would be expected by chance. Most SSA judgments agree with a clinician's evaluation but a standardized physical evaluation by a rheumatologist and performance-based tests appear to add important information.

Evaluation of a rehabilitation component of home care for homebound elderly.

Fifty-seven elderly homebound patients with musculoskeletal disability were randomized to a stepped-up outreach rehabilitation program or to usual treatment. Sixty-four percent of patient goals were met, but overall there were no significant differences in functional scores, institutionalization, or quality of life. Twenty-three patients had maintained clinical improvement at the end of the study. The services were achieved at a modest marginal cost.

Evaluation of comprehensive rehabilitation services for elderly homebound patients with arthritis and orthopedic disability.

Fifty-seven elderly homebound patients with arthritis and orthopedic disabilities were randomized to a goal-oriented outreach rehabilitation program or to usual treatment. Although 64% of patient goals were met, there were no overall significant differences in functional scores, institutionalization, or contentment between treatment and control periods. Twenty-three patients had maintained clinical improvement at the end of the study and some patients were dramatically improved with simple measures. The program's marginal costs were modest and consisted primarily of expenses associated with therapist's visits. The total costs of assistive devices and home modifications amounted to $1,902. Twenty-five percent of the homebound population could benefit from such services but the actual number who would partake is small.

Psychological care of adults with rheumatoid arthritis.

Physicians treating patients with chronic rheumatoid arthritis spend a considerable amount of time dealing with the psychological and social aspects of the disease. The patients' reaction to the disease can be related to age, experience, personality, and environment at work and at home. Common problems include loss of independence and self esteem, relations with family and friends, employment, and management of pain. Physicians should be attentive to the psychosocial aspects of rheumatoid arthritis and recognize their dynamic interactions to minimize their impact.