The new Canadian guidelines for the treatment of FM should provide health professionals with confidence in the complete care of these patients and improve clinical outcomes.
Objective. Forgetting to take medications is an important cause of nonadherence. This study evaluated factors associated with forgetting to take medications in a large cohort of persons with systemic lupus erythematosus (SLE) participating in the University of California, San Francisco Lupus Outcomes Study (LOS). Relationships among adherence problems and service utilization (outpatient visits, emergency department visits, and hospitalizations) were also evaluated. Methods. The cohort consisted of 834 LOS participants who provided self-reported frequency of forgetting to take medications as directed. Predictors of adherence and service utilization patterns included self-reported sociodemographics, disease-related characteristics (e.g., disease activity, recent SLE flare), and mental health characteristics (Center for Epidemiologic Studies Depression Scale and cognitive function screen). Health care utilization patterns included the presence and quantity of visits to rheumatologists, primary care physicians, other care providers, emergency departments, and hospitalizations. Results. Forty-six percent of the LOS cohort reported forgetting to take medications at least some of the time. Depressive symptom severity was a strong predictor of adherence difficulties (odds ratio [OR] 1.04, 95% confidence interval [95% CI] 1.02-1.05; P < 0.0001) after accounting for all other predictors. Persons reporting adherence difficulties had significantly greater numbers of outpatient rheumatology and primary care visits, and were more likely to visit the emergency department (OR 1.45, 95% CI 1.04 -2.04; P ؍ 0.03). Conclusion. Depression may be an important cause of medication adherence problems, and difficulties with adherence are significantly associated with high-cost service utilization, specifically emergency department visits. In an era of rapidly evolving treatments for lupus, identifying patients at risk for adherence problems may decrease medical expenditures and improve patient outcomes in SLE.
Objective. To estimate the long-term direct medical costs and health care utilization for patients with systemic lupus erythematosus (SLE) and a subset of SLE patients with nephritis. Methods. Patients with newly active SLE were found in the MarketScan Medicaid Database (1999 -2005), which includes all inpatient, outpatient, emergency department, and pharmaceutical claims for more than 10 million Medicaid beneficiaries. The date a patient became newly active was defined as the earliest observed SLE diagnosis code, with a 6-month clean period prior to the diagnosis. This method identified 2,298 patients with a consecutive followup of 5 years. A reference group of patients without SLE was constructed using propensity score matching. Nephritis was assessed based on diagnosis and procedure codes involving the kidney. Results. Mean annual medical costs for SLE patients totaled $16,089 at year 1, which is significantly greater (by $6,831) than that for reference patients. Costs decreased slightly at year 2 but then increased yearly at an average rate of 16% through year 5, to $23,860. SLE patients without nephritis (n ؍ 1,809) had costs $967-3,756 higher than the reference patients. SLE patients with nephritis (n ؍ 489) had costs $13,228 -34,907 greater than the reference group. Inpatient visits for the nephritis subgroup were 0.6 -1.0 per capita, which are approximately twice the rate for all SLE patients and 3 to 4 times higher than the reference group. Conclusion. SLE is a costly condition to treat. Medical expenses incurred by SLE patients increase steadily over time, particularly for patients with nephritis.
Objective. To compare differences in long-term outcome between adults with childhood-onset (age at diagnosis <18 years) systemic lupus erythematosus (SLE) and with adult-onset SLE. Using self-report data, differences in organ involvement and disease morbidity, current disease status and activity, past and current medication use, and number of physician visits were compared, based on age at diagnosis of SLE. Results. Average disease duration for the cSLE and aSLE subgroups was 16.5 and 13.4 years, respectively, and mean age at followup was 30.5 and 49.9 years, respectively. When compared with aSLE subjects, cSLE subjects had a higher frequency of SLE-related renal disease, whereas aSLE subjects were more likely to report a history of pulmonary disease. Rates of clotting disorders, seizures, and myocardial infarction were similar between the 2 groups. At followup, cSLE subjects had lower overall disease activity, but were more likely to be taking steroids and other immunosuppressive therapies. The total number of yearly physician visits was similar between the 2 groups, although cSLE subjects had a higher number of nephrology visits. Conclusion. This study demonstrates important differences in the outcomes of patients with cSLE and aSLE, and provides important prognostic information about long-term SLE disease activity and treatment.
Objective-To examine the reliability, construct validity, and responsiveness of the Systemic Lupus Erythematosus Activity Questionnaire (SLAQ) in a large observational cohort of persons with systemic lupus erythematosus (SLE).Methods-We evaluated the reliability of the SLAQ using Cronbach's alpha and principal factor analysis and ascertained construct validity by studying the association of the SLAQ with other clinically relevant, validated patient assessments of health. We estimated responsiveness by calculating standardized response means and analyzing the association of changes in SLAQ scores with changes in other patient assessments of health.Results-The SLAQ had excellent reliability, as reflected by Cronbach's alpha (0.87) and principal factor analysis (one factor accounted for 92% of the variance). SLAQ scores were strongly correlated with other health indices, including the Short Form 12 Physical Component Summary and the Short Form 36 Physical Functioning subscale. Scores were significantly higher for respondents reporting a flare, more disease activity, hospitalization in the last year, concurrent use of immunosuppressive medication, and work disability. The SLAQ demonstrated a small to moderate degree of responsiveness; standardized response means were 0.66 and −0.37 for those reporting clinical worsening and improvement, respectively. Across a range of other patient assessments of disease status, the SLAQ had a response in the direction predicted by these other measures.Conclusion-The SLAQ demonstrates adequate reliability, construct validity, and responsiveness in our large, community-based cohort and appears to represent a promising tool for studies of SLE outside the clinical setting.
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