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OBJECTIVE: Systemic sclerosis (SSc) affects multiple physical, psychological, and social domains and is associated with impaired health-related quality of life (HRQOL).We compared the HRQOL of SSc patients with individuals in the general population and patients with other common chronic diseases. METHODS: HRQOL of SSc patients in the Canadian Scleroderma Research Group registry was measured using version 2 of the Medical Outcomes Trust Short Form-36 (SF-36). Results were compared to US general population norms and scores reported for patients with other common chronic diseases, namely heart disease, lung disease, hypertension, diabetes, and depression. RESULTS: SF-36 scores were available for 504 SSc patients (86% women, mean age 56 yrs, mean disease duration since onset of first non-Raynaud’s manifestation of SSc 11 yrs). The greatest impairment in SF-36 subscale scores appeared to be in the physical functioning, general health, and role physical domains. SF-36 subscale and summary scores in SSc were significantly worse compared to US general population norms for women of similar ages, except for mental health and mental component summary score, which were not significantly different, and were generally comparable to or worse than the scores of patients with other common chronic conditions. CONCLUSION: HRQOL of patients with SSc is significantly impaired compared to that of the general population and is comparable to or worse than that of patients with other common chronic conditions.

ObjectiveTo prospectively track work loss among those employed and work entry among those not employed in a cohort of persons with systemic lupus erythematosus SLE, assess risk factors for these outcomes, and compare rates of the outcomes with a matched national sample.MethodsThe present study analyzed 4 years of data from the Lupus Outcomes Study LOS, augmented by information on the local labor market from the Census Bureau and the Bureau of Labor Statistics. We used the KaplanMeier method to assess time from study initiation until work loss or work entry, and Cox proportional hazards regression to estimate factors affecting these outcomes. Finally, we compared rates of work loss and work entry in the LOS with rates in the Survey of Income and Program Participation SIPP.ResultsAt study initiation, 394 LOS participants 51 were employed, of whom 92 23.4 experienced work loss. In multivariate analysis, older age, lower cognitive and physical functioning, and higher reports of depressive symptoms predicted work loss. In comparison with the SIPP sample, rates of work loss did not differ. Of the 376 LOS participants not employed, 76 20.2 experienced work entry. In multivariate analysis, less disease activity, fewer lung manifestations, better physical functioning, and shorter time since last employment predicted work entry. In comparison with the SIPP, rates of work entry were only lower between ages 35 and 55 years.ConclusionUntil age 55 years, low rates of employment among persons with SLE may be due to lower rates of work entry rather than higher rates of work loss. Beyond age 55 years, both high rates of work loss and low rates of work entry contribute to low rates of employment.

ObjectiveForgetting 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.MethodsThe cohort consisted of 834 LOS participants who provided selfreported frequency of forgetting to take medications as directed. Predictors of adherence and service utilization patterns included selfreported sociodemographics, diseaserelated 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.ResultsFortysix 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.ConclusionDepression may be an important cause of medication adherence problems, and difficulties with adherence are significantly associated with highcost 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.

ObjectiveTo compare differences in longterm outcome between adults with childhoodonset age at diagnosis <18 years systemic lupus erythematosus SLE and with adultonset SLE.MethodsData were derived from the University of California Lupus Outcomes Study, a longitudinal cohort of 885 adult subjects with SLE 90 childhoodonset cSLE, 795 adultonset aSLE. Baseline and 1year followup data were obtained via structured 1hour telephone interviews conducted between 2002 and 2006. Using selfreport 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.ResultsAverage 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 SLErelated 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.ConclusionThis study demonstrates important differences in the outcomes of patients with cSLE and aSLE, and provides important prognostic information about longterm SLE disease activity and treatment.

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).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.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.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.

To assess the specific contribution of memory impairment to employment status in persons with systemic lupus erythematosus (SLE).A total of 832 patients with SLE were surveyed and data collected on demographics, SLE symptoms and activity, health status, depression, medications, health resource utilization, and current employment status. Participants underwent screening for memory impairment and based on their scores were categorized to 3 levels of memory function: intact, mild‐moderate impairment, and severe impairment. Employment status was compared across impairment levels using multivariate logistic regression, adjusting for sociodemographic characteristics (i.e., age, sex, race, education, and marital status), employment status at year of diagnosis, disease activity, disease duration, and depression.In the intact memory function group, 54.2% were employed, versus 40.6% in the mild‐moderate impairment group and 31.0% in the severe impairment group. In the intact memory function group, 29.2% were unable to work, versus 40.6% in the mild‐moderate impairment group and 56.3% in the severe impairment group. After multivariate adjustment, increasing levels of memory impairment predicted a decreased likelihood of being employed: odds ratio (OR) 0.70, 95% confidence interval (95% CI) 0.48–1.02 for the mild‐moderate impairment group and OR 0.57, 95% CI 0.32–1.00 for the severe impairment group. Participants with memory impairment were more likely to report being unable to work: OR 1.36, 95% CI 0.90–2.04 for the mild‐moderate impairment group, and OR 1.99, 95% CI 1.12–3.55 for the severe impairment group. These findings were statistically significant only in the severe impairment groups.The findings suggest that severe memory impairment is an important factor associated with employment status in persons with SLE.