Identifying dementia outcomes in UK Biobank: A validation study of primary care, hospital admissions and mortality data
Open accessAbstract
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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Since 2006, the UK Biobank has amassed substantial data from participants encompassing environmental factors, lifestyle choices, sociodemographic information, overall health and well-being, and cognitive and physical assessments.
“Additionally, since 2006, the UK Biobank (UKB) [3,4,5] has amassed a substantial amount of data from participants, encompassing various fields such as environmental factors, lifestyle choices, sociodemographic information, overall health and well-being, as well as cognitive and physical assessments [6].”
From A Comprehensive Review on Synergy of Multi-Modal Data and AI Technologies in Medical Diagnosis (2024) · cites this paper as [6]
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“0% for hospital admissions and mortality data respectively in the UK Biobank [45].”
Background
- Authors
- Biobank, O. B. O. D. P. U. A. U., Wilkinson, T., Schnier, C., Bush, K., Rannikmäe, K., Henshall, D. E., Lerpiniere, C., Allen, N. E., Flaig, R., Russ, T. C., Bathgate, D., Pal, S., O’Brien, J. T., & Sudlow, C. L. M.
- Affiliations
- University of Edinburgh (GB)
- University of Oxford (GB)
- Alzheimer Scotland (GB)
- James Cook University Hospital (GB)
- University of Cambridge (GB)
- Corresponding author
- Wilkinson, Tim
- ORCID
- Venue
- European Journal of Epidemiology
- Published
- 2019-02-26
- Volume
- 34
- Issue
- 6
- Pages
- 557-565
- ISSN
- 0393-2990 (ISSN-L)
- 1573-7284
- PMC
- PMC6497624
- OpenAlex
- W2917862264
- Cited by
- 452
- References
- 24
- Citations by year
- 2026: 77 · 2025: 87 · 2024: 96 · 2023: 83 · 2022: 56 · 2021: 34 · 2020: 12 · 2019: 7
- FWCI
- 21.56
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- European Journal of Epidemiology (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Edinburgh Research Explorer (University of Edinburgh) (submittedVersion, cc-by)
- Apollo (University of Cambridge) (submittedVersion, cc-by)
- Apollo (cc-by)
- Alzheimer s & Dementia
- Funders
- Medical Research Council (MR/P001823/1)
- MRC Dementias Platform UK (MR/L015382/1)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
- Physical Sciences › Mathematics › Statistics and Probability › Statistical Methods in Epidemiology
- Keywords
- dementia, case ascertainment, positive predictive value, primary care records, hospitalization, mortality statistics, UK Biobank, Alzheimer's disease, vascular dementia, routinely collected healthcare data, data linkage
- MeSH terms
- Adult, Aged, Dementia, Female, United Kingdom, Hospitalization, Humans, Male, Middle Aged, Primary Health Care, Treatment Outcome, Biological Specimen Banks
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