Search

In rheumatoid arthritis (RA), quality indicators (QIs) are tools used to measure process of care. This study aimed to assess performance of selected QIs from the 2004 Arthritis Foundation’s QI Set at 2 major sites of a university network of teaching hospitals.

Systemic lupus erythematosus (SLE) is a systemic autoimmune disease characterised by variable and unpredictable manifestations that can severely affect a person's physical and mental well-being, social life and ability to acquire and maintain gainful employment. Damage to vital organs may ensue as a result of the disease itself or as a consequence of treatment, and patients often consume substantial health-care resources and incur considerable health-care costs. Furthermore, SLE tends to affect women in young and middle adulthood, at a time in their lives when they are usually most actively engaged in the workforce, and can have important consequences with respect to acquiring and maintaining employment and advancing in one's career. A number of studies have attempted to assess the health-care costs (direct costs) associated with SLE, the effects of SLE on employment and the associated costs due to decreases in work productivity (indirect costs). In this article, we review a number of recent studies that have added to our current understanding of the economic burden of SLE.

ObjectiveTo examine childhoodonset disease as a predictor of mortality in a cohort of adult patients with systemic lupus erythematosus SLE.MethodsData were derived from the University of California Lupus Outcomes Study, a longitudinal cohort of 957 adult subjects with SLE that includes 98 subjects with childhoodonset SLE. Baseline and followup data were obtained via telephone interviews conducted in 2002–2007. The number of deaths during 5 years of followup was determined and standardized mortality ratios SMRs for the cohort, and across age groups, were calculated. KaplanMeier life table analysis was used to compare mortality rates between childhood defined as SLE diagnosis at <18 years of age and adultonset SLE. Multivariate Cox proportional hazard models were used to determine predictors of mortality.ResultsDuring the median followup period of 48 months, 72 deaths 7.5 of subjects occurred, including 9 deaths 12.5 in subjects with childhoodonset SLE. The overall SMR was 2.5 95 confidence interval 95 CI 2.0–3.2. In KaplanMeier survival analysis, after adjusting for age, childhoodonset subjects were at increased risk for mortality throughout the followup period P< 0.0001. In a multivariate model adjusting for age, disease duration, and other covariates, childhoodonset SLE was independently associated with an increased mortality risk hazard ratio HR 3.1, 95 CI 1.3–7.3, as was low socioeconomic status measured by education HR 1.9, 95 CI 1.1–3.2, and end stage renal disease HR 2.1, 95 CI 1.1–4.0.ConclusionChildhoodonset SLE was a strong predictor of mortality in this cohort. Interventions are needed to prevent early mortality in this population.

ObjectiveTo describe characteristics of systemic lupus erythematosus SLE patients who are frequent users of the emergency department and to identify predictors of frequent emergency department use.MethodsData for this study were derived from the University of California, San Francisco Lupus Outcomes Study, a large cohort of persons with SLE who undergo annual structured interviews. Participants were categorized into 1 of 3 levels of emergency department utilization: nonusers no visits in the preceding year, occasional users, 1–2 visits, and frequent users ≥3 visits. We compared characteristics of the 3 groups and determined predictors of frequent emergency department use ≥3 visits using multivariate logistic regression, adjusting for a variety of potential confounding covariates.ResultsOf 807 study participants, 499 62 had no emergency department visits; 230 28 had occasional emergency department visits 1–2 visits; and 78 10 had frequent ≥3 visits emergency department visits. Frequent users were younger, less likely to be employed, and less likely to have completed college. They also had greater disease activity, worse general health status, and more depressive symptoms. Frequent emergency department users were more likely to have Medicaid as their principal insurance. In multivariate logistic regression, older age predicted a lower likelihood of frequent emergency department visits, whereas greater disease activity and having Medicaid insurance predicted a higher likelihood of frequent emergency department visits.ConclusionIn persons with SLE, greater disease activity and Medicaid insurance are associated with more frequent emergency department use.

ObjectiveA number of studies all n <200 have assessed healthrelated quality of life HRQOL in patients with systemic sclerosis SSc, but no systematic review of the effect of SSc on HRQOL has been done. The objective of this study was to systematically review the literature on HRQOL in SSc measured using the Medical Outcomes Trust Short Form 36 SF36.MethodsA comprehensive search was conducted in August 2007 using Medline, CINAHL, and EMBase to identify original research studies reporting SF36 scores of SSc patients. Selected studies were reviewed and characteristics of the study samples and SF36 data were extracted. Bayesian metaanalysis and metaregression were performed to obtain pooled estimates of SF36 physical component summary PCS and mental component summary MCS scores for all patients as well as by limited and diffuse disease status.ResultsTwelve data sets with a total of 1,127 SSc patients were included in the systematic review. HRQOL was impaired in patients with SSc, with pooled SF36 PCS scores being more than 1 SD below the general population 38.3; 95 credible interval 95 CI 35.2, 41.5 and pooled SF36 MCS scores being ∼0.5 SDs below the general population 46.6; 95 CI 44.2, 49.1. SF36 PCS scores were 3.5 points 95 CI −1.0, 8.0 lower in patients with diffuse compared with limited disease.ConclusionThis study provides robust evidence of the presence and magnitude of impairment in HRQOL in patients with SSc. Although the impairment appears greater in physical health, mental health impairment is also reported.

ObjectiveTo estimate the longterm direct medical costs and health care utilization for patients with systemic lupus erythematosus SLE and a subset of SLE patients with nephritis.MethodsPatients 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 6month 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.ResultsMean 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.ConclusionSLE is a costly condition to treat. Medical expenses incurred by SLE patients increase steadily over time, particularly for patients with nephritis.

OBJECTIVE: Systemic sclerosis (SSc) is a multisystem disease associated with impaired health-related quality of life (HRQOL). Our objective was to identify the clinical characteristics that correlate with the physical health status of patients with SSc, as assessed by the Medical Outcomes Trust Short Form-36 (SF-36). METHODS: Cross-sectional, multicenter study of 416 patients from the Canadian Scleroderma Research Group Registry. Patients were assessed with detailed clinical histories, medical examinations, and self-administered SF-36. Multiple linear regression was used to assess the relationship between selected demographic and clinical variables and the SF-36 Physical Component Summary (PCS) score. RESULTS: The greatest impairments in the SF-36 were in the domains measuring physical health, and the mean SF-36 PCS score was 37.5 (± 11.2). In multivariate analysis, significant clinical predictors of the SF-36 PCS were shortness of breath, number of gastrointestinal problems, skin score, swollen joint count, and age. The final model explained 47% of the variance in the SF-36 PCS. CONCLUSION: Clinical characteristics identified as significant correlates of the self-reported physical health status in SSc should each be targets of intervention in order to improve the HRQOL of patients with this disease.

OBJECTIVE: To evaluate the relationship between renal activity and quality of life (QOL) in patients with systemic lupus erythematosus (SLE). METHODS: Three hundred eighty-six patients completed annual Medical Outcomes Study Short Form-36 questionnaires and physicians completed the SLE Disease Activity Index and Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index. Concurrent association between renal activity and QOL was evaluated through regression models that adjusted for demographics and nonrenal disease activity and nonrenal damage. To characterize the longitudinal relationship between change in renal activity and change in QOL, all renal activity and QOL data over the entire study were used to estimate a linear trend within each individual patient through hierarchical modeling. RESULTS: In the regression model that assessed the association between renal activity and QOL, on average, each additional renal activity item fulfilled was associated with a 2.04-unit (95% CI 0.88, 3.24) decrease in the physical function subscale, a 5.28-unit (95% CI 2.76, 7.76) decrease in the role-physical subscale, a 2.24-unit (95% CI 0.72, 3.80) decrease in the social function subscale, and a 1.16-unit (95% CI 0.60, 1.72) decrease in the physical component summary score. In the hierarchical model, no association was observed between changes in renal activity and QOL. CONCLUSION: Patients with SLE and active renal disease concurrently experience a slightly poorer QOL than those without renal disease, especially in the physical domains. Because the confidence intervals were wide, we could not accurately estimate whether a longitudinal change in renal activity was associated with a change in QOL.

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 systematically develop a quality indicator QI set for systemic lupus erythematosus SLE.MethodsWe used a validated process that combined available scientific evidence and expert consensus to develop a QI set for SLE. We extracted 20 candidate indicators from a systematic literature review of clinical practice guidelines pertaining to SLE. An advisory panel revised and augmented these candidate indicators and, through 2 rounds of voting, arrived at 25 QIs. These QIs advanced to the next phase of the project, in which we employed a modification of the RANDUCLA Appropriateness Method. A systematic review of the literature was performed for each QI, linking the proposed process of care to potential improved health outcomes. After reviewing this scientific evidence, a second interdisciplinary expert panel convened to discuss the evidence and provide final ratings on the validity and feasibility of each QI.ResultsThe final expert panel rated 20 QIs as both valid and feasible. Areas covered included diagnosis, general preventive strategies e.g., vaccinations, sun avoidance counseling, and screening for cardiovascular disease, osteoporosis prevention and treatment, drug toxicity monitoring, renal disease, and reproductive health.ConclusionWe employed a rigorous multistep approach with systematic literature reviews and 2 expert panels to develop QIs for SLE. This new set of indicators provides an opportunity to assess health care quality in patients with SLE and represents an initial step toward the important goal of improving care in this patient population.

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.

ObjectiveTo assess costs related to systemic sclerosis SSc and their determinants.MethodsThe Canadian Scleroderma Research Group is comprised of 15 centers contributing to a registry of adult patients with SSc. Available crosssectional data included clinical variables and standardized measures of health resource use and time loss. Annualized averages of direct medical costs were calculated by multiplying health service utilization levels by the appropriate unit prices, determined from government fee schedules, professional associations, and other sources. Indirect costs were calculated from the subjects selfreported time loss related to illness and to seeking health care, as well as caregiver time losses. Costs were represented in 2007 Canadian dollars.ResultsIn the sample of 457 patients with SSc, the average direct cost per patient was 5,038 per year 95 confidence interval 95 CI 4,400, 5,676. Regarding indirect costs, the value of potential productivity loss related to paid labor was estimated at an average of 5,345 per patient per year 95 CI 4,598, 6,092, and the cost of lost productivity related to unpaid labor contributed another 8,070 per patient annually. The average total annual cost was estimated at 18,453 95 CI 16,598, 20,308 per patient. Total annual costs were strongly associated with younger age, greater disease severity, and poorer health status.ConclusionCosts related to SSc are considerable, and there is a high impact of disease severity and health status on economic burden.

ObjectiveTo estimate health care costs and costs associated with changes in work productivity among persons with systemic lupus erythematosus SLE in the US.MethodsData were derived from the University of California, San Francisco Lupus Outcomes Study. Participants provided information on their health care resource use and employment. Cost estimates were derived for both direct health care costs and costs related to changes in work productivity. Direct health care costs included costs for hospitalizations, emergency department services, physician visits, outpatient surgical procedures, dialysis, and medications. Productivity costs were estimated by measuring changes in hours of work productivity since diagnosis of SLE; these estimates were also compared with normal US population data.ResultsFor the total population of participants, the mean annual direct cost was 12,643 2004 US dollars. The mean annual productivity cost for subjects of employment age ≥18 and <65 years was 8,659. The mean annual total cost direct and productivity for subjects of employment age was 20,924. Regression results showed that greater disease activity, longer disease duration, and worse physical and mental health were significant predictors of higher direct costs; older age predicted lower direct costs. Older age, greater disease activity, and worse physical and mental health status were significant predictors of higher costs due to changes in work productivity.ConclusionBoth direct health care costs and costs associated with changes in work productivity are substantial and both represent important contributors to the total costs associated with SLE.

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.

To compare health care utilization in people with systemic lupus erythematosus (SLE) in health maintenance organizations (HMOs) and fee‐for‐service (FFS).A structured survey was administered to a cohort of 982 people with SLE who were assembled between 2002 and early 2005. A total of 2,656 person‐years of observation were completed by the end of 2005. In each year, respondents reported their health care utilization and whether they had HMO or FFS coverage. We compared health care utilization of those in HMOs and FFS, with and without adjustment for socioeconomic, demographic, and health characteristics using repeated‐measures regression techniques.Compared with people with SLE who were in FFS, those in HMOs were younger (3.3 years), received a diagnosis at an earlier age (3.6 years), had slightly less disease activity (0.4 on a 10‐point scale), were more likely to be nonwhite (8.8%), were less likely to be below the poverty line (7.8%), and were less likely to have public insurance (29.7%). The 2 groups did not differ in other characteristics. On an unadjusted basis, subjects with SLE in HMOs had significantly fewer physician visits (3.1; 95% confidence interval [95% CI] 1.7, 4.5) and were less likely to report one or more outpatient surgical visits (6.3%; 95% CI 2.5, 10.0), and hospital admissions (5.5%; 95% CI 1.7, 9.3) than those in FFS. Adjustment reduced the differences in physician visits (2.3; 95% CI 1.1, 3.5), outpatient surgical rates (4.4%; 95% CI 0.6, 8.1), and hospital admission rates (4.0%, 95% CI 0.4, 7.7).Subjects with SLE in HMOs utilized substantially less ambulatory care and were less likely to have outpatient surgery and hospital admissions than those in FFS; the effects were not completely explained by socioeconomic, demographic, and health characteristics.

To examine the role of sociodemographic factors (age, race/ethnicity, and sex) and socioeconomic factors (income and education) in the utilization of rheumatology subspecialty care in a large cohort of subjects with systemic lupus erythematosus (SLE).Data were derived from a cohort of 982 English‐speaking subjects with SLE. Between 2002 and 2004, trained survey workers administered a telephone survey to subjects eliciting information regarding demographics, SLE disease status, medications, health care utilization, health insurance, and socioeconomic status. We identified predictors of utilization of rheumatology subspecialty care, defined as at least 1 visit to a rheumatologist in the previous year. In addition, we examined factors associated with identifying any specialist as primarily responsible for SLE care.Older age, lower income, Medicare insurance, male sex, and less severe disease were associated with lack of rheumatology care. However, race/ethnicity and educational attainment were not significantly related to seeing a rheumatologist. After multivariate adjustment, only older age, lower income, and male sex remained associated with absence of rheumatology visits. Those least likely to identify a specialist as primarily responsible for their SLE care included older subjects and those reporting lower incomes.Although elderly subjects and those with lower incomes traditionally have access to health care through the Medicare and Medicaid programs, the presence of health insurance alone did not ensure equal utilization of care. This finding suggests that additional barriers to accessing rheumatology subspecialty care may exist in these patient populations.

To evaluate the associations between Medicaid insurance and distance traveled by patients to treating physicians and health care utilization for patients with systemic lupus erythematosus (SLE).A total of 982 adults with SLE were recruited between 2002 and 2004. We calculated the distance between patient homes and physicians using Mapquest, an Internet mapping program. We then assessed the association between Medicaid status and distance traveled to the primary SLE provider, presence of ≥1 physician visits, and the number of all physician visits, with and without adjustment for demographic and medical covariates.On an unadjusted basis, Medicaid patients traveled longer distances to see their primary SLE provider. This effect was pronounced for patients under the care of a rheumatologist. Adjustment reduced, but did not eliminate, these differences. With adjustment for covariates, Medicaid patients were equally as likely to see a rheumatologist as non‐Medicaid patients. However, Medicaid patients were more likely to be seen by a general practitioner or in the emergency room for their SLE, and reported more visits to general practitioners and the emergency room for SLE.Medicaid patients with SLE traveled longer distances to see an SLE physician, especially rheumatologists. They also reported a different pattern of health care utilization. These results suggest that Medicaid patients may face barriers in obtaining comprehensive medical services in proximity to their residences.

To track changes in the proportion of persons ages 18–64 with systemic lupus erythematosus (SLE) who were employed from diagnosis through 2004, to estimate changes in annual work hours during this time, and to describe risk factors for work loss among those employed at diagnosis.A structured telephone survey was administered to a cohort of 982 persons with SLE, which was assembled between 2002 and 2004. Of the 900 enrolled in 2002–2003, 832 (92%) were re‐interviewed in 2004. We tabulated the proportion employed at diagnosis, at baseline interview, and at followup in 2004. Among individuals employed at each time frame, we estimated the hours of work per year. We then used the Kaplan‐Meier method to estimate time until work loss among individuals employed at diagnosis and Cox proportional hazards regression to describe the risk factors for such work loss.Between diagnosis and followup interview, the proportion employed declined from 74% to 54%. Over the same period, hours of work per year declined by 32.2% among all individuals with a work history, but by only 1% among those continuously employed. Among individuals working at diagnosis, the proportion employed declined by 15% and 63% after 5 and 20 years, respectively. Demographics (age, sex, and education) and work characteristics (physical and psychological demands of jobs and level of control) were the principal determinants of work loss.Total cessation of employment, rather than reduced hours among employed persons, accounts for most of the decline in annual work hours among persons with SLE.

We previously reported that patients with systemic lupus erythematosus (SLE) in the US incurred ∼19% and 12% higher direct medical costs than patients in Canada and the UK, respectively, without experiencing superior outcomes expressed as disease damage or quality of life. In the present study, we compared cumulative indirect costs over 4 years in these patients.A total of 715 patients with SLE (269 US, 231 Canada, 215 UK) were surveyed semiannually for 4 years on employment status and time lost from labor and nonlabor market activities. Cross‐country comparisons of indirect costs were performed.In the US, Canada, and the UK, mean 4‐year cumulative indirect costs (95% confidence interval [95% CI]) due to diminished labor market activity were $56,745 ($49,919, $63,571), $38,642 ($32,785, $44,500), and $42,213 ($35,859, $48,567), respectively, and cumulative indirect costs due to diminished nonlabor market activity were $5,249 ($2,766, $7,732), $5,455 ($3,290, $7,620), and $8,572 ($5,626, $11,518), respectively. Regression results showed that cumulative indirect costs (95% CI) due to diminished labor market activity in the US were $6,750 ($580, $12,910) greater than in Canada and $10,430 ($4,050, $16,800) greater than in the UK. Indirect costs due to diminished nonlabor market activity in the US were $280 (−$2,950, $3,520) less than in Canada and $2,010 (−$1,490, $5,510) less than in the UK, both results insignificant due to wide CIs.Despite American patients incurring greater direct medical costs than Canadian and British patients, they do not experience superior health outcomes in terms of less productivity loss in either labor market or nonlabor market activities.

BACKGROUND: Recent neurophysiological evidence attests to the validity of fibromyalgia (FM), a chronic pain condition that affects >2% of the population.OBJECTIVES: To present the evidence-based guidelines for the diagnosis, management and patient trajectory of individuals with FM.METHODS: A needs assessment following consultation with diverse health care professionals identified questions pertinent to various aspects of FM. A literature search identified the evidence available to address these questions; evidence was graded according to the standards of the Oxford Centre for Evidence-Based Medicine. Drafted recommendations were appraised by an advisory panel to reflect meaningful clinical practice.RESULTS: The present recommendations incorporate the new clinical concepts of FM as a clinical construct without any defining physical abnormality or biological marker, characterized by fluctuating, diffuse body pain and the frequent symptoms of sleep disturbance, fatigue, mood and cognitive changes. In the absence of a defining cause or cure, treatment objectives should be patient-tailored and symptom-based, aimed at reducing global complaints and enhancing function. Healthy lifestyle practices with active patient participation in health care forms the cornerstone of care. Multimodal management may include nonpharmacological and pharmacological strategies, although it must be acknowledged that pharmacological treatments provide only modest benefit. Maintenance of function and retention in the workforce is encouraged.CONCLUSIONS: 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.