Population‐based lupus registries: Advancing our epidemiologic understanding

Lim, S. Sam; Drenkard, Cristina; McCune, W. Joseph; Helmick, Charles G.; Gordon, Caroline; DeGuire, Peter; Bayakly, Rana; Somers, Emily C.

doi:10.1002/art.24835

Cited by 61 publications

(24 citation statements)

References 15 publications

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“…Taking advantage of an innovative public health strategy that allowed us to link the GLR with the USRDS, we were able to estimate the first population-based estimates of ESRD incidence among individuals with a recent diagnosis of SLE in the U.S. Southeast. The GLR is one of five CDC National Lupus Registries, the first comprehensive population-based epidemiological study of lupus conducted in the United States (22, 23, 27). Case ascertainment was maximized by the use of multiple sources, and SLE diagnoses were validated by comprehensive clinical data collected from individual records, likely reflecting the full spectrum of SLE.…”

Section: Discussionmentioning

confidence: 99%

“…The primary aim of the GLR was to more accurately estimate the incidence and prevalence of SLE in 2002-2004 in Fulton and DeKalb Counties (Atlanta), Georgia (23). GLR methods are described in detail elsewhere (22, 23). Briefly, Emory investigators served as designated agents of the Georgia Department of Public Health, who used its public health surveillance exemption to the HIPAA Privacy Rule (45 CFR parts 160 and 164) to review medical records and capture protected health information without requiring patient consent [HIPAA 45 CFR 164.512(b)].…”

Section: Methodsmentioning

confidence: 99%

“…Potential SLE cases were identified from multiple sources, including hospitals; rheumatologists, dermatologists, and nephrologists; commercial and hospital-based laboratories; regional pathology laboratories; lupus research databases; and population databases, including the United States Renal Data System (USRDS), Veterans Affairs data, Medicaid claims data, and state mortality and hospital discharge data. The presence of diagnostic codes [International Classification of Diseases, 9 th revision (ICD-9)] for SLE (710.0) and related conditions—including discoid lupus (695.4), other specified connective tissue disease (710.8), and other unspecified connective tissue disease (710.9)—in any of these sources flagged patients as potential SLE cases (22). All available medical records were fully abstracted for each potential case with residence in Fulton or DeKalb County in 2002-2004.…”

Section: Methodsmentioning

confidence: 99%

“…The Georgia Lupus Registry (GLR) (21, 22), which recently published estimates of population incidence of SLE in metropolitan Atlanta (23), offers a unique opportunity to estimate all-cause ESRD incidence among individuals with a new, validated diagnosis of SLE, free of much of the bias and variability of previous studies. The purpose of this study is to provide estimates of the incidence of ESRD using a population-based registry of newly diagnosed SLE patients in the southeastern United States and identify patient characteristics that might contribute to variation in ESRD incidence among SLE patients.…”

mentioning

confidence: 99%

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Incidence of End‐Stage Renal Disease Among Newly Diagnosed Systemic Lupus Erythematosus Patients: The Georgia Lupus Registry

Plantinga

Lim

Patzer

et al. 2016

Arthritis Care & Research

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Objective To estimate and identify factors associated with incidence of all-cause end-stage renal disease (ESRD) among newly diagnosed systemic lupus erythematosus (SLE) patients. Methods Data from a national registry of treated ESRD were linked to data from a lupus registry of SLE patients who were newly diagnosed and living in Atlanta, Georgia, in 2002-2004 (median follow-up, 7.8 years). Cumulative incidence and incidence rates (ESRD treatment initiations per 1000 patient-years) were calculated, and age- and race-adjusted Poisson models were used to calculate incidence rate ratios (IRRs). Results Among 344 newly diagnosed SLE patients, 29 initiated ESRD over 2603.8 years of follow-up. Incidence rates were 13.8 (95% CI, 9.4-20.3) and 3.3 (95% CI, 0.8-13.0) per 1000 patient-years among black and white patients, respectively; corresponding 5-year cumulative incidence was 6.4% and 2.5%. Lupus nephritis documented prior to 2005, which occurred in 80% of those who progressed to ESRD, was the strongest risk factor for incident ESRD (IRR=6.7, 95% CI, 2.7-16.8; incidence rate=27.6 per 1000 patient-years). Results suggested that patients who were black vs. white (IRR=3.9, 95% CI, 0.9-16.4) or <18 years (vs. ≥30 years) at diagnosis (IRR=2.1, 95% CI, 0.9-5.3) may be more likely to progress to ESRD, but incidence did not differ by sex or other characteristics. Conclusion Incidence of all-cause ESRD among patients with a recent diagnosis of SLE is high in Georgia. Interventions to decrease ESRD incidence among newly diagnosed SLE patients should target young and black patients as well as patients with lupus nephritis.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

mentioning

confidence: 99%

See 2 more Smart Citations

Incidence of End‐Stage Renal Disease Among Newly Diagnosed Systemic Lupus Erythematosus Patients: The Georgia Lupus Registry

Plantinga

Lim

Patzer

et al. 2016

Arthritis Care & Research

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“…As described elsewhere (4), this lupus surveillance project was conducted under a grant of authority from the MDCH as a public health surveillance activity, with Institutional Review Board exemptions and waiver for informed consent from the CDC, the MDCH, and the University of Michigan (UM).…”

Section: Methodsmentioning

confidence: 99%

Population‐Based Incidence and Prevalence of Systemic Lupus Erythematosus: The Michigan Lupus Epidemiology and Surveillance Program

Somers

Marder

Cagnoli

et al. 2014

Arthritis & Rheumatology

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374

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Objective To estimate the incidence and prevalence of systemic lupus erythematosus (SLE) in a sociodemographically diverse southeastern Michigan source population of 2.4 million people. Methods SLE cases fulfilling the American College of Rheumatology classification criteria (primary case definition) or meeting rheumatologist-judged SLE criteria (secondary definition) and residing in Wayne or Washtenaw Counties during 2002–2004 were included. Case finding was performed from 6 source types, including hospitals and private specialists. Age-standardized rates were computed, and capture–recapture was performed to estimate underascertainment of cases. Results The overall age-adjusted incidence and prevalence (ACR definition) per 100,000 persons were 5.5 (95% confidence interval [95% CI] 5.0–6.1) and 72.8 (95% CI 70.8–74.8). Among females, the incidence was 9.3 per 100,000 persons and the prevalence was 128.7 per 100,000 persons. Only 7 cases were estimated to have been missed by capture–recapture, adjustment for which did not materially affect the rates. SLE prevalence was 2.3-fold higher in black persons than in white persons, and 10-fold higher in females than in males. Among incident cases, the mean ± SD age at diagnosis was 39.3 ± 16.6 years. Black SLE patients had a higher proportion of renal disease and end-stage renal disease (ESRD) (40.5% and 15.3%, respectively) as compared to white SLE patients (18.8% and 4.5%, respectively). Black patients with renal disease were diagnosed as having SLE at younger age than white patients with renal disease (mean ± SD 34.4 ± 14.9 years versus 41.9 ± 21.3 years; P = 0.05). Conclusion SLE prevalence was higher than has been described in most other population-based studies and reached 1 in 537 among black female persons. There were substantial racial disparities in the burden of SLE, with black patients experiencing earlier age at diagnosis, >2-fold increases in SLE incidence and prevalence, and increased proportions of renal disease and progression to ESRD as compared to white patients.

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Burden of Systemic Lupus Erythematosus on Employment and Work Productivity: Data From a Large Cohort in the Southeastern United States

Drenkard

Bao

Dennis

et al. 2014

Arthritis Care & Research

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Objective. To examine the burden of systemic lupus erythematosus (SLE) on work loss, unemployment, and work productivity impairment in an SLE cohort from the southeastern US. Methods. We examined 689 SLE patients ages 18 -64 years from the Georgians Organized Against Lupus (GOAL) cohort. GOAL is a longitudinal cohort predominantly derived from the Georgia Lupus Registry, a population-based registry established in metropolitan Atlanta. We used the Kaplan-Meier method to assess the proportion of patients who self-reported work loss since diagnosis. We compared unemployment between SLE patients and the general population from the same geographic area, calculating the standardized unemployment ratio (SUR) within demographic and disease strata. We also calculated the percentage of work productivity impairment by disease outcomes. Results. Of 511 patients employed at diagnosis, 249 (49%) experienced work loss within an average disease duration of 13 years. The proportion of patients who lost their jobs since diagnosis was almost twice for African Americans than for whites. However, the SURs were similar across demographic characteristics, including race. Patients with severe disease activity and severe organ damage had the highest SUR at 4.4 and 5.6, respectively. Among those that remained employed, patients with severe fatigue, neurocognitive symptoms, and musculoskeletal symptoms had the highest impairment of work productivity. Conclusion. SLE imposes a substantial toll on individuals and burden on society. Major factors that negatively impact work outcomes are fatigue, disease activity, and organ damage. More effective treatments along with coping strategies at the workplace are needed to reduce the burden of SLE on work outcomes.

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Population‐based lupus registries: Advancing our epidemiologic understanding

Cited by 61 publications

References 15 publications

Incidence of End‐Stage Renal Disease Among Newly Diagnosed Systemic Lupus Erythematosus Patients: The Georgia Lupus Registry

Incidence of End‐Stage Renal Disease Among Newly Diagnosed Systemic Lupus Erythematosus Patients: The Georgia Lupus Registry

Population‐Based Incidence and Prevalence of Systemic Lupus Erythematosus: The Michigan Lupus Epidemiology and Surveillance Program

Burden of Systemic Lupus Erythematosus on Employment and Work Productivity: Data From a Large Cohort in the Southeastern United States

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