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Evaluation of routinely collected records for dementia outcomes in UK: a prospective cohort study

Hayat, Shabina; Luben, Robert; Khaw, Kay-Tee; Wareham, Nicholas; Brayne, Carol; (2022) Evaluation of routinely collected records for dementia outcomes in UK: a prospective cohort study. BMJ Open , 12 (6) , Article e060931. 10.1136/bmjopen-2022-060931. Green open access

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Abstract

Objectives To evaluate the characteristics of individuals recorded as having a dementia diagnosis in different routinely collected records and to examine the extent of overlap of dementia coding across data sources. Also, to present comparisons of secondary and primary care records providing value for researchers using routinely collected records for dementia outcome capture. Study design A prospective cohort study. Setting and participants A cohort of 25 639 men and women in Norfolk, aged 40-79 years at recruitment (1993-1997) followed until 2018 linked to routinely collected to identify dementia cases. Data sources include mortality from death certification and National Health Service (NHS) hospital or secondary care records. Primary care records for a subset of the cohort were also reviewed. Primary outcome measure Diagnosis of dementia (any-cause). Results Over 2000 participants (n=2635 individuals) were found to have a dementia diagnosis recorded in one or more of the data sources examined. Limited concordance was observed across the secondary care data sources. We also observed discrepancies with primary care records for the subset and report on potential linkage-related selection bias. Conclusions Use of different types of record linkage from varying parts of the UK's health system reveals differences in recorded dementia diagnosis, indicating that dementia can be identified to varying extents in different parts of the NHS system. However, there is considerable variation, and limited overlap in those identified. We present potential selection biases that might occur depending on whether cause of death, or primary and secondary care data sources are used. With the expansion of using routinely collected health data, researchers must be aware of these potential biases and inaccuracies, reporting carefully on the likely extent of limitations and challenges of the data sources they use.

Type: Article
Title: Evaluation of routinely collected records for dementia outcomes in UK: a prospective cohort study
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/bmjopen-2022-060931
Publisher version: https://doi.org/10.1136/bmjopen-2022-060931
Language: English
Additional information: This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third-party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/
Keywords: Science & Technology, Life Sciences & Biomedicine, Medicine, General & Internal, General & Internal Medicine, Dementia, PUBLIC HEALTH, EPIDEMIOLOGY, PRIMARY-CARE, DIAGNOSIS
UCL classification: UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Institute of Ophthalmology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL
URI: https://discovery.ucl.ac.uk/id/eprint/10152308
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