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The diagnosis, burden and prognosis of dementia: A record-linkage cohort study in England

Pujades-Rodriguez, M; Assi, V; Gonzalez-Izquierdo, A; Wilkinson, T; Schnier, C; Sudlow, C; Hemingway, H; (2018) The diagnosis, burden and prognosis of dementia: A record-linkage cohort study in England. PLoS ONE , 13 (6) , Article e0199026. 10.1371/journal.pone.0199026. Green open access

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Abstract

Objectives Electronic health records (EHR) might be a useful resource to study the risk factors and clinical care of people with dementia. We sought to determine the diagnostic validity of dementia captured in linked EHR. Methods and findings A cohort of adults in linked primary care, hospital, disease registry and mortality records in England, [CALIBER (CArdiovascular disease research using LInked Bespoke studies and Electronic health Records)]. The proportion of individuals with dementia, Alzheimer’s disease, vascular and rare dementia in each data source was determined. A comparison was made of symptoms and care between people with dementia and age-, sex- and general practice-matched controls, using conditional logistic regression. The lifetime risk and prevalence of dementia and mortality rates in people with and without dementia were estimated with random-effects Poisson models. There were 47,386 people with dementia: 12,633 with Alzheimer’s disease, 9540 with vascular and 1539 with rare dementia. Seventy-four percent of cases had corroborating evidence of dementia. People with dementia were more likely to live in a deprived area (conditional OR 1.26;95%CI:1.20–1.31 most vs least deprived), have documented memory impairment (cOR = 11.97;95%CI:11.24–12.75), falls (cOR = 2.36;95%CI:2.31–2.41), depression (cOR = 2.03; 95%CI:1.98–2.09) or anxiety (cOR = 1.27; 95%CI:1.23–1.32). The lifetime risk of dementia at age 65 was 9.2% (95%CI:9.0%-9.4%), in men and 14.9% (95%CI:14.7%-15.1%) in women. The population prevalence of recorded dementia increased from 0.3% in 2000 to 0.7% in 2010. A higher mortality rate was observed in people with than without dementia (IRR = 1.56;95%CI:1.54–1.58). Conclusions Most people with a record of dementia in linked UK EHR had some corroborating evidence for diagnosis. The estimated 10-year risk of dementia was higher than published population-based estimations. EHR are therefore a promising source of data for dementia research.

Type: Article
Title: The diagnosis, burden and prognosis of dementia: A record-linkage cohort study in England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1371/journal.pone.0199026
Publisher version: https://doi.org/10.1371/journal.pone.0199026
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 article’s 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, Multidisciplinary Sciences, Science & Technology - Other Topics, ALZHEIMERS-DISEASE, COGNITIVE FUNCTION, ATTRITION
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics > Clinical Epidemiology
URI: https://discovery-pp.ucl.ac.uk/id/eprint/10052825
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