Aimee O. Hersh

Differences in Long-Term Disease Activity and Treatment of Adult Patients With Childhood-and Adult-Onset Systemic Lupus Erythematosus

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. METHODS Data were derived from the University of California Lupus Outcomes Study, a longitudinal cohort of 885 adult subjects with SLE (90 childhood-onset [cSLE], 795 adult-onset [aSLE]). Baseline and 1-year followup data were obtained via structured 1-hour telephone interviews conducted between 2002 and 2006. 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.

Consensus treatment plans for induction therapy of newly diagnosed proliferative lupus nephritis in juvenile systemic lupus erythematosus

To formulate consensus treatment plans (CTPs) for induction therapy of newly diagnosed proliferative lupus nephritis (LN) in juvenile systemic lupus erythematosus (SLE).

Childhood-onset disease as a predictor of mortality in an adult cohort of patients with systemic lupus erythematosus

To examine childhood‐onset disease as a predictor of mortality in a cohort of adult patients with systemic lupus erythematosus (SLE).

Health care costs and costs associated with changes in work productivity among persons with systemic lupus erythematosus

OBJECTIVE To estimate health care costs and costs associated with changes in work productivity among persons with systemic lupus erythematosus (SLE) in the US. METHODS Data 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. RESULTS For the total population of participants, the mean annual direct cost was

Change in Health Status and Access to Care in Young Adults With Special Health Care Needs: Results From the 2007 National Survey of Adult Transition and Health

12,643 (2004 US dollars). The mean annual productivity cost for subjects of employment age (>or=18 and <65 years) was

The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center

8,659. The mean annual total cost (direct and productivity) for subjects of employment age was

Provision of preventive health care in systemic lupus erythematosus: data from a large observational cohort study.

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. CONCLUSION Both 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.

Macrophage activation syndrome in children with systemic lupus erythematosus and children with juvenile idiopathic arthritis

BACKGROUND Despite over 500,000 adolescents with special health care needs transitioning to adulthood each year, limited information is available on their health status or their access to care after transition. OBJECTIVE To describe the change in health status and access to care of a nationally sampled, longitudinal cohort of young adults with special health care needs (ASHCN). METHODS We analyzed follow-up data collected in the 2007 Survey of Adult Transition and Health on young adults who were 14-17 years of age when their parents participated in the 2001 National Survey of Children with Special Health Care Needs. We describe changes in access to care and health status over time, and used logistic regression to identify characteristics that were associated with declining health status in this cohort. RESULTS 1,865 participants, aged 19-23 years, completed the Survey of Adult Transition and Health. Between 2001 and 2007, there was a 3.6 fold increase in the proportion experiencing delayed or forgone care; 10% reported a decline in health status. There was a 7.7-fold increase in the proportion reporting no insurance. In regression analysis, factors associated with declining health status between 2001 and 2007 included underlying disease severity and delayed or forgone care in young adulthood. CONCLUSIONS We found significant deterioration in insurance coverage, usual source of care and receiving timely health care as ASHCN aged into adulthood, and that this was associated with decline in health status. Our findings suggest that further population-based analyses of health outcomes are needed to plan for interventions to assist this vulnerable population.

Adult outcomes of childhood-onset rheumatic diseases

BackgroundLittle is known about the transfer of care process from pediatric to adult rheumatology for patients with chronic rheumatic disease. The purpose of this study is to examine changes in disease status, treatment and health care utilization among adolescents transferring to adult care at the University of California San Francisco (UCSF).MethodsWe identified 31 eligible subjects who transferred from pediatric to adult rheumatology care at UCSF between 1995–2005. Subject demographics, disease characteristics, disease activity and health care utilization were compared between the year prior to and the year following transfer of care.ResultsThe mean age at the last pediatric rheumatology visit was 19.5 years (17.4–22.0). Subject diagnoses included systemic lupus erythematosus (52%), mixed connective tissue disease (16%), juvenile idiopathic arthritis (16%), antiphospholipid antibody syndrome (13%) and vasculitis (3%). Nearly 30% of subjects were hospitalized for disease treatment or management of flares in the year prior to transfer, and 58% had active disease at the time of transfer. In the post-transfer period, almost 30% of subjects had an increase in disease activity. One patient died in the post-transfer period. The median transfer time between the last pediatric and first adult rheumatology visit was 7.1 months (range 0.7–33.6 months). Missed appointments were common in the both the pre and post transfer period.ConclusionA significant percentage of patients who transfer from pediatric to adult rheumatology care at our center are likely to have active disease at the time of transfer, and disease flares are common during the transfer period. These findings highlight the importance of a seamless transfer of care between rheumatology providers.

Self-management skills in adolescents with chronic rheumatic disease: A cross-sectional survey

IntroductionCancer and infections are leading causes of mortality in systemic lupus erythematosus (SLE) after diseases of the circulatory system, and therefore preventing these complications is important. In this study, we examined two categories of preventive services in SLE: cancer surveillance (cervical, breast, and colon) and immunizations (influenza and pneumococcal). We compared the receipt of these services in SLE to the general population, and identified subgroups of patients who were less likely to receive these services.MethodsWe compared preventive services reported by insured women with SLE enrolled in the University of California, San Francisco Lupus Outcomes Study (n = 685) to two representative samples derived from a statewide health interview survey, a general population sample (n = 18,013) and a sample with non-rheumatic chronic conditions (n = 4,515). In addition, using data from the cohort in both men and women (n = 742), we applied multivariate regression analyses to determine whether characteristics of individuals (for example, sociodemographic and disease factors), health systems (for example, number of visits, involvement of generalists or rheumatologists in care, type of health insurance) or neighborhoods (neighborhood poverty) influenced the receipt of services.ResultsThe receipt of preventive care in SLE was similar to both comparison samples. For cancer surveillance, 70% of eligible respondents reported receipt of cervical cancer screening and mammography, and 62% reported colon cancer screening. For immunizations, 59% of eligible respondents reported influenza immunization, and 60% reported pneumococcal immunization. In multivariate regression analyses, several factors were associated with a lower likelihood of receiving preventive services, including younger age and lower educational attainment. We did not observe any effects by neighborhood poverty. A higher number of physician visits and involvement of generalist providers in care was associated with a higher likelihood of receiving most services.ConclusionsAlthough receipt of cancer screening procedures and immunizations in our cohort was comparable to the general population, we observed significant variability by sociodemographic factors such as age and educational attainment. Further research is needed to identify the physician, patient or health system factors contributing to this observed variation in order to develop effective quality improvement interventions.