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Presentation of SLE in UK primary care using the Clinical Practice Research Datalink
  1. Alison L Nightingale1,
  2. Julie E Davidson2,
  3. Charles T Molta3,
  4. Hong J Kan4 and
  5. Neil J McHugh1,5
  1. 1Department of Pharmacy & Pharmacology, University of Bath, Bath, UK
  2. 2Worldwide Epidemiology, GlaxoSmithKline R&D, Stockley Park, London, UK
  3. 3U.S. Health Outcomes, GlaxoSmithKline, Research Triangle Park, North Carolina, USA
  4. 4U.S. Medical Affairs, GlaxoSmithKline, Philadelphia, Pennsylvania, USA
  5. 5Royal National Hospital for Rheumatic Diseases, Bath, UK
  1. Correspondence to Dr Alison Nightingale; a.nightingale{at}bath.ac.uk

Abstract

Objectives To describe the presenting symptoms of SLE in primary care using the Clinical Practice Research Database (CPRD) and to calculate the time from symptom presentation to SLE diagnosis.

Methods Incident cases of SLE were identified from the CPRD between 2000 and 2012. Presenting symptoms were identified from the medical records of cases in the 5 years before diagnosis and grouped using the British Isles Lupus Activity Group (BILAG) symptom domains. The time from the accumulation of one, two and three BILAG domains to SLE diagnosis was investigated, stratified by age at diagnosis (<30, 30–49 and ≥50 years).

Results We identified 1426 incident cases (170 males and 1256 females) of SLE. The most frequently recorded symptoms and signs prior to diagnosis were musculoskeletal, mucocutaneous and neurological. The median time from first musculoskeletal symptom to SLE diagnosis was 26.4 months (IQR 9.3–43.6). There was a significant difference in the time to diagnosis (log rank p<0.01) when stratified by age and disease severity at baseline, with younger patients <30 years and those with severe disease having the shortest times and patients aged ≥50 years and those with mild disease having the longest (6.4 years (IQR 5.8–6.8)).

Conclusions The time from symptom onset to SLE diagnosis is long, especially in older patients. SLE should be considered in patients presenting with flaring or chronic musculoskeletal, mucocutaneous and neurological symptoms.

  • Systemic Lupus Erythematosus
  • Primary Care
  • Epidemiology
  • Clinical Practice Research Datalink
  • Diagnostic Delay

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Twitter Follow Alison Nightingale @AlisonNight73

  • Contributors ALN, JED, CTM, HJK and NJMcH were all involved in the development of the protocol for the study, in the interpretation of the results and drafting of the manuscript. ALN undertook all data management and analysis for the study.

  • Funding This work was supported by a research grant from GlaxoSmithKline, study, WEUKBRE6479.

  • Competing interests ALN received a research grant for this project from GlaxoSmithKline; JED, CTM and HJK are, or have been, shareholders and employees of GlaxoSmithKline; NMcH received a research grant from and has been a consultant for GlaxoSmithKline.

  • Ethics approval Independent Scientific Advisory Committee for the CPRD Protocol Number 13_051.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The code lists used for this study are available from the corresponding author on request.