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. 2016 Jan 4;6(1):e007769.
doi: 10.1136/bmjopen-2015-007769.

Case definitions in Swedish register data to identify systemic lupus erythematosus

Affiliations

Case definitions in Swedish register data to identify systemic lupus erythematosus

Elizabeth V Arkema et al. BMJ Open. .

Abstract

Objective: To develop and investigate the utility of several different case definitions for systemic lupus erythematosus (SLE) using national register data in Sweden.

Methods: The reference standard consisted of clinically confirmed SLE cases pooled from four major clinical centres in Sweden (n=929), and a sample of non-SLE comparators randomly selected from the National Population Register (n=24,267). Demographics, comorbidities, prescriptions and autoimmune disease family history were obtained from multiple registers and linked to the reference standard. We first used previously published SLE definitions to create algorithms for SLE. We also used modern data mining techniques (penalised least absolute shrinkage and selection operator logistic regression, elastic net regression and classification trees) to objectively create data-driven case definitions. Sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) were calculated for the case definitions identified.

Results: Defining SLE by using only hospitalisation data resulted in the lowest sensitivity (0.79). When SLE codes from the outpatient register were included, sensitivity and PPV increased (PPV between 0.97 and 0.98, sensitivity between 0.97 and 0.99). Addition of medication information did not greatly improve the algorithm's performance. The application of data mining methods did not yield different case definitions.

Conclusions: The use of SLE International Classification of Diseases (ICD) codes in outpatient clinics increased the accuracy for identifying individuals with SLE using Swedish registry data. This study implies that it is possible to use ICD codes from national registers to create a cohort of individuals with SLE.

Keywords: EPIDEMIOLOGY; RHEUMATOLOGY; STATISTICS & RESEARCH METHODS.

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Figures

Figure 1
Figure 1
Flow chart showing how the final group of SLE cases and general population non-cases were identified through exclusion criteria. ACR, American College of Rheumatology; SLE, systemic lupus erythematosus.

References

    1. Lofstrom B, Backlin C, Sundstrom C et al. . A closer look at non-Hodgkin's lymphoma cases in a national Swedish systemic lupus erythematosus cohort: a nested case-control study. Ann Rheum Dis 2007;66:1627–32. 10.1136/ard.2006.067108 - DOI - PMC - PubMed
    1. Lofstrom B, Backlin C, Sundstrom C et al. . Myeloid leukaemia in systemic lupus erythematosus—a nested case-control study based on Swedish registers. Rheumatology (Oxford) 2009;48:1222–6. 10.1093/rheumatology/kep204 - DOI - PubMed
    1. Chibnik LB, Massarotti EM, Costenbader KH. Identification and validation of lupus nephritis cases using administrative data. Lupus 2010;19:741–3. 10.1177/0961203309356289 - DOI - PMC - PubMed
    1. Bernatsky S, Joseph L, Pineau CA et al. . A population-based assessment of systemic lupus erythematosus incidence and prevalence—results and implications of using administrative data for epidemiological studies. Rheumatology (Oxford) 2007;46:1814–18. 10.1093/rheumatology/kem233 - DOI - PubMed
    1. Leonard D, Svenungsson E, Sandling JK et al. . Coronary heart disease in systemic lupus erythematosus is associated with interferon regulatory factor-8 gene variants. Circ Cardiovasc Genet 2013;6:255–63. 10.1161/CIRCGENETICS.113.000044 - DOI - PubMed