Identifying dementia using medical data linkage in a longitudinal cohort study: Lothian Birth Cohort 1936

BMC Psychiatry

Research

Lucy E. Stirland¹  Donncha S. Mullin²  Tom C. Russ³  Holly Greer⁴  Georgina Weatherdon⁴  Elizabeth Robertson⁴  Anna Szalek⁴  Catherine-Anne Convery⁴  Cinzia Giuntoli⁴  Emily Buchanan⁴  Tim Wilkinson⁵  Danielle Page⁶  Ian J. Deary⁶  Simon R. Cox⁶  Adele Taylor⁶  Susan D. Shenkin⁷ 

[1] Alzheimer Scotland Dementia Research Centre, University of Edinburgh, Edinburgh, UK;Division of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK;Global Brain Health Institute, University of California San Francisco, San Francisco, UK;Alzheimer Scotland Dementia Research Centre, University of Edinburgh, Edinburgh, UK;Division of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK;NHS Lothian, Royal Edinburgh Hospital, Edinburgh, UK;Division of Psychiatry, University of Edinburgh, Kennedy Tower, Royal Edinburgh Hospital, Morningside Terrace, EH10 5HF, Edinburgh, UK;Alzheimer Scotland Dementia Research Centre, University of Edinburgh, Edinburgh, UK;Division of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK;NHS Lothian, Royal Edinburgh Hospital, Edinburgh, UK;Lothian Birth Cohorts, University of Edinburgh, Edinburgh, UK;Alzheimer Scotland Dementia Research Centre, University of Edinburgh, Edinburgh, UK;NHS Lothian, Royal Edinburgh Hospital, Edinburgh, UK;Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK;Sunnybrook Research Institute, University of Toronto, Toronto, Canada;Lothian Birth Cohorts, University of Edinburgh, Edinburgh, UK;Usher Institute, University of Edinburgh, Edinburgh, UK;

关键词: Dementia;    Ascertainment;    Diagnosis;    Identify;    Outcome;    Incidence;    Prevalence;    Ageing;    Older adults;    Longitudinal;    Electronic health record;   

DOI  :  10.1186/s12888-023-04797-7

 received in 2022-11-18, accepted in 2023-04-18,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundThe Lothian Birth Cohort 1936 (LBC1936) is a longitudinal study of ageing with well-characterised assessments, but until now, it has relied on self-report or proxies for dementia such as cognitive tests. Our aims were twofold:a) to describe a framework for identifying dementia in a cohort study.b) to report the age-specific incidence and prevalence of all-cause dementia and dementia subtypes in 865 individuals in the LBC1936.MethodsElectronic Health Records (EHR) of all participants were reviewed, and relevant information was extracted to form case vignettes for everyone with any record of cognitive dysfunction. The EHR data sources include hospital and clinic letters, general practitioner and hospital referrals, prescribed medications, imaging and laboratory results. Death certificate data were obtained separately. Clinician assessments were performed when there was concern about a participant's cognition. A diagnosis of probable dementia, possible dementia, or no dementia was agreed upon by a consensus diagnostic review board, comprised of a multidisciplinary team of clinical dementia experts who reviewed case vignettes and clinician assessment letters. For those with probable dementia, a subtype was also determined, where possible. We compared the agreement between our newly ascertained dementia diagnoses with the existing self-reported dementia diagnoses.ResultsSelf-reported dementia diagnoses were positive in only 17.8% of ascertained dementia diagnoses. The EHR review identified 163/865 (18.8%) individuals as having cognitive dysfunction. At the consensus diagnostic review board, 118/163 were diagnosed with probable all-cause dementia, a prevalence of 13.6%. Age-specific dementia prevalence increased with age from 0.8% (65–74.9 years) to 9.93% (85–89.9 years). Prevalence rates for women were higher in nearly all age groups. The most common subtype was dementia due to Alzheimer disease (49.2%), followed by mixed Alzheimer and cerebrovascular disease (17.0%), dementia of unknown or unspecified cause (16.1%), and dementia due to vascular disease (8.5%).ConclusionsWe present a robust systematic framework and guide for other cohort teams wanting to ascertain dementia diagnoses. The newly ascertained dementia diagnosis provides vital data for further analyses of LBC1936 to allow exploration of lifecourse predictors of dementia.

【 授权许可】

CC BY   
© The Author(s) 2023

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