Accuracy of routinely-collected healthcare data for identifying motor neurone disease cases: a systematic review

Horrocks, S., Wilkinson, T., Schnier, C., Ly, A., Woodfield, R., Rannikmäe, K., Quinn, T. J. and Sudlow, C. L.M. (2017) Accuracy of routinely-collected healthcare data for identifying motor neurone disease cases: a systematic review. PLoS ONE, 12(2), e0172639. (doi: 10.1371/journal.pone.0172639) (PMID:28245254) (PMCID:PMC5330471)

Abstract

Background: Motor neurone disease (MND) is a rare neurodegenerative condition, with poorly understood aetiology. Large, population-based, prospective cohorts will enable powerful studies of the determinants of MND, provided identification of disease cases is sufficiently accurate. Follow-up in many such studies relies on linkage to routinely-collected health datasets. We systematically evaluated the accuracy of such datasets in identifying MND cases. Methods: We performed an electronic search of MEDLINE, EMBASE, Cochrane Library and Web of Science for studies published between 01/01/1990-16/11/2015 that compared MND cases identified in routinely-collected, coded datasets to a reference standard. We recorded study characteristics and two key measures of diagnostic accuracy—positive predictive value (PPV) and sensitivity. We conducted descriptive analyses and quality assessments of included studies. Results: Thirteen eligible studies provided 13 estimates of PPV and five estimates of sensitivity. Twelve studies assessed hospital and/or death certificate-derived datasets; one evaluated a primary care dataset. All studies were from high income countries (UK, Europe, USA, Hong Kong). Study methods varied widely, but quality was generally good. PPV estimates ranged from 55–92% and sensitivities from 75–93%. The single (UK-based) study of primary care data reported a PPV of 85%. Conclusions: Diagnostic accuracy of routinely-collected health datasets is likely to be sufficient for identifying cases of MND in large-scale prospective epidemiological studies in high income country settings. Primary care datasets, particularly from countries with a widely-accessible national healthcare system, are potentially valuable data sources warranting further investigation.

• Item Type: Articles
• Additional Information: This work is funded by the Medical Research Council Dementias Platform UK (www.dementiasplatform.uk).
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Quinn, Professor Terry
• Authors: Horrocks, S., Wilkinson, T., Schnier, C., Ly, A., Woodfield, R., Rannikmäe, K., Quinn, T. J., and Sudlow, C. L.M.
• College/School: College of Medical Veterinary and Life Sciences > School of Cardiovascular & Metabolic Health
• Journal Name: PLoS ONE
• Publisher: Public Library of Science
• ISSN: 1932-6203
• ISSN (Online): 1932-6203
• Copyright Holders: Copyright © 2017 Horrocks et al.
• First Published: First published in PLoS ONE 12(2): e0172639
• Publisher Policy: Reproduced under a Creative Commons License