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Alzheimers Dement. 2018 Aug;14(8):1038-1051. doi: 10.1016/j.jalz.2018.02.016. Epub 2018 Apr 3.

Identifying dementia cases with routinely collected health data: A systematic review.

Author information

1
Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, Scotland; Usher Institute of Population Health Sciences and Informatics, Nine Bioquarter, Edinburgh, Scotland. Electronic address: tim.wilkinson@ed.ac.uk.
2
Usher Institute of Population Health Sciences and Informatics, Nine Bioquarter, Edinburgh, Scotland.
3
Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, Scotland; Usher Institute of Population Health Sciences and Informatics, Nine Bioquarter, Edinburgh, Scotland.
4
Institute of Public Health, Cambridge University, Cambridge, UK.
5
Institute of Cardiovascular and Medical Sciences, University of Glasgow, Glasgow, Scotland.
6
Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, Scotland; Usher Institute of Population Health Sciences and Informatics, Nine Bioquarter, Edinburgh, Scotland; UK Biobank, Coordinating Centre, Stockport, UK.

Abstract

INTRODUCTION:

Prospective, population-based studies can be rich resources for dementia research. Follow-up in many such studies is through linkage to routinely collected, coded health-care data sets. We evaluated the accuracy of these data sets for dementia case identification.

METHODS:

We systematically reviewed the literature for studies comparing dementia coding in routinely collected data sets to any expert-led reference standard. We recorded study characteristics and two accuracy measures-positive predictive value (PPV) and sensitivity.

RESULTS:

We identified 27 eligible studies with 25 estimating PPV and eight estimating sensitivity. Study settings and methods varied widely. For all-cause dementia, PPVs ranged from 33%-100%, but 16/27 were >75%. Sensitivities ranged from 21% to 86%. PPVs for Alzheimer's disease (range 57%-100%) were generally higher than those for vascular dementia (range 19%-91%).

DISCUSSION:

Linkage to routine health-care data can achieve a high PPV and reasonable sensitivity in certain settings. Given the heterogeneity in accuracy estimates, cohorts should ideally conduct their own setting-specific validation.

KEYWORDS:

Alzheimer's disease; Clinical coding; Cohort studies; Dementia; Epidemiology; Positive predictive value; Predictive value of tests; Prospective studies; Sensitivity; Vascular

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