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


ABSTRACT: 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.

SUBMITTER: Wilkinson T 

PROVIDER: S-EPMC6497624 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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

Wilkinson Tim T   Schnier Christian C   Bush Kathryn K   Rannikmäe Kristiina K   Henshall David E DE   Lerpiniere Chris C   Allen Naomi E NE   Flaig Robin R   Russ Tom C TC   Bathgate Deborah D   Pal Suvankar S   O'Brien John T JT   Sudlow Cathie L M CLM  

European journal of epidemiology 20190226 6


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  ...[more]

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