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. 2018 Jun 26;13(6):e0199026.
doi: 10.1371/journal.pone.0199026. eCollection 2018.

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

Mar Pujades-Rodriguez  1 , Valentina Assi  2 , Arturo Gonzalez-Izquierdo  3   4 , Tim Wilkinson  2   5   6 , Christian Schnier  2   6 , Cathie Sudlow  2   5   6 , Harry Hemingway  3   4 , William N Whiteley  6
Affiliations

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

Mar Pujades-Rodriguez et al. PLoS One. .

Erratum in

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.

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Conflict of interest statement

This work uses data provided by patients and collected by the NHS as part of their care and support. The authors have no competing interests.

Figures

Fig 1
Fig 1. Capture of dementia in EHRs across the entire registration period in primary care, hospital episode statistics, and death records.
Fig 2
Fig 2. Capture of dementia by vascular dementia, Alzheimer’s dementia, rare dementia and dementia without specific diagnosis.
Fig 3
Fig 3. Time trends in prevalence of dementia according to age group and sex.
Point prevalence estimated on 1st July 2000 and 2005 and 1st January 2010.
See this image and copyright information in PMC

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