Identifying dementia outcomes in UK Biobank: a validation study of primary care, hospital admissions and mortality data

Prospective, population-based studies that recruit participants in mid-life are valuable resources for dementia research. Follow-up in these studies is often through linkage to routinely-collected healthcare datasets. We investigated the accuracy of these datasets for dementia case ascertainment in...

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Main Authors: Wilkinson, T, Schnier, C, Bush, K, Rannikmäe, K, Henshall, D, Lerpiniere, C, Allen, N, Flaig, R, Russ, T, Bathgate, D, Pal, S, O’Brien, J, Sudlow, C
Format: Journal article
Language:English
Published: Springer 2019
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author Wilkinson, T
Schnier, C
Bush, K
Rannikmäe, K
Henshall, D
Lerpiniere, C
Allen, N
Flaig, R
Russ, T
Bathgate, D
Pal, S
O’Brien, J
Sudlow, C
author_facet Wilkinson, T
Schnier, C
Bush, K
Rannikmäe, K
Henshall, D
Lerpiniere, C
Allen, N
Flaig, R
Russ, T
Bathgate, D
Pal, S
O’Brien, J
Sudlow, C
author_sort Wilkinson, T
collection OXFORD
description Prospective, population-based studies that recruit participants in mid-life are valuable resources for dementia research. Follow-up in these studies is often through linkage to routinely-collected healthcare datasets. We investigated the accuracy of these datasets for dementia case ascertainment in a validation study using data from UK Biobank—an open access, population-based study of > 500,000 adults aged 40–69 years at recruitment in 2006–2010. From 17,198 UK Biobank participants recruited in Edinburgh, we identified those with ≥ 1 dementia code in their linked primary care, hospital admissions or mortality data and compared their coded diagnoses to clinical expert adjudication of their full-text medical record. We calculated the positive predictive value (PPV, the proportion of cases identified that were true positives) for all-cause dementia, Alzheimer’s disease and vascular dementia for each dataset alone and in combination, and explored algorithmic code combinations to improve PPV. Among 120 participants, PPVs for all-cause dementia were 86.8%, 87.3% and 80.0% for primary care, hospital admissions and mortality data respectively and 82.5% across all datasets. We identified three algorithms that balanced a high PPV with reasonable case ascertainment. For Alzheimer’s disease, PPVs were 74.1% for primary care, 68.2% for hospital admissions, 50.0% for mortality data and 71.4% in combination. PPV for vascular dementia was 43.8% across all sources. UK routinely-collected healthcare data can be used to identify all-cause dementia in prospective studies. PPVs for Alzheimer’s disease and vascular dementia are lower. Further research is required to explore the geographic generalisability of these findings.
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spelling oxford-uuid:3ef3b57a-2c6d-4d74-aed0-a69b761f74292022-03-26T14:29:03ZIdentifying dementia outcomes in UK Biobank: a validation study of primary care, hospital admissions and mortality dataJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:3ef3b57a-2c6d-4d74-aed0-a69b761f7429EnglishSymplectic Elements at OxfordSpringer2019Wilkinson, TSchnier, CBush, KRannikmäe, KHenshall, DLerpiniere, CAllen, NFlaig, RRuss, TBathgate, DPal, SO’Brien, JSudlow, CProspective, population-based studies that recruit participants in mid-life are valuable resources for dementia research. Follow-up in these studies is often through linkage to routinely-collected healthcare datasets. We investigated the accuracy of these datasets for dementia case ascertainment in a validation study using data from UK Biobank—an open access, population-based study of > 500,000 adults aged 40–69 years at recruitment in 2006–2010. From 17,198 UK Biobank participants recruited in Edinburgh, we identified those with ≥ 1 dementia code in their linked primary care, hospital admissions or mortality data and compared their coded diagnoses to clinical expert adjudication of their full-text medical record. We calculated the positive predictive value (PPV, the proportion of cases identified that were true positives) for all-cause dementia, Alzheimer’s disease and vascular dementia for each dataset alone and in combination, and explored algorithmic code combinations to improve PPV. Among 120 participants, PPVs for all-cause dementia were 86.8%, 87.3% and 80.0% for primary care, hospital admissions and mortality data respectively and 82.5% across all datasets. We identified three algorithms that balanced a high PPV with reasonable case ascertainment. For Alzheimer’s disease, PPVs were 74.1% for primary care, 68.2% for hospital admissions, 50.0% for mortality data and 71.4% in combination. PPV for vascular dementia was 43.8% across all sources. UK routinely-collected healthcare data can be used to identify all-cause dementia in prospective studies. PPVs for Alzheimer’s disease and vascular dementia are lower. Further research is required to explore the geographic generalisability of these findings.
spellingShingle Wilkinson, T
Schnier, C
Bush, K
Rannikmäe, K
Henshall, D
Lerpiniere, C
Allen, N
Flaig, R
Russ, T
Bathgate, D
Pal, S
O’Brien, J
Sudlow, C
Identifying dementia outcomes in UK Biobank: a validation study of primary care, hospital admissions and mortality data
title Identifying dementia outcomes in UK Biobank: a validation study of primary care, hospital admissions and mortality data
title_full Identifying dementia outcomes in UK Biobank: a validation study of primary care, hospital admissions and mortality data
title_fullStr Identifying dementia outcomes in UK Biobank: a validation study of primary care, hospital admissions and mortality data
title_full_unstemmed Identifying dementia outcomes in UK Biobank: a validation study of primary care, hospital admissions and mortality data
title_short Identifying dementia outcomes in UK Biobank: a validation study of primary care, hospital admissions and mortality data
title_sort identifying dementia outcomes in uk biobank a validation study of primary care hospital admissions and mortality data
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