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. 2016 Oct 28:13:11.
doi: 10.1186/s12982-016-0053-z. eCollection 2016.

Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care

Anna Brown  1 , Oksana Kirichek  1 , Angela Balkwill  1 , Gillian Reeves  1 , Valerie Beral  1 , Cathie Sudlow  2 , John Gallacher  3 , Jane Green  1
Affiliations

Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care

Anna Brown et al. Emerg Themes Epidemiol. .

Abstract

Background: Electronic linkage of UK cohorts to routinely collected National Health Service (NHS) records provides virtually complete follow-up for cause-specific hospital admissions and deaths. The reliability of dementia diagnoses recorded in NHS hospital data is not well documented.

Methods: For a sample of Million Women Study participants in England we compared dementia recorded in routinely collected NHS hospital data (Hospital Episode Statistics: HES) with dementia recorded in two separate sources of primary care information: a primary care database [Clinical Practice Research Datalink (CPRD), n = 340] and a survey of study participants' General Practitioners (GPs, n = 244).

Results: Dementia recorded in HES fully agreed both with CPRD and with GP survey data for 85% of women; it did not agree for 1 and 4%, respectively. Agreement was uncertain for the remaining 14 and 11%, respectively; and among those classified as having uncertain agreement in CPRD, non-specific terms compatible with dementia, such as 'memory loss', were recorded in the CPRD database for 79% of the women. Agreement was significantly better (p < 0.05 for all comparisons) for women with HES diagnoses for Alzheimer's disease (95 and 94% agreement with any dementia for CPRD and GP survey, respectively) and for vascular dementia (88 and 88%, respectively) than for women with a record only of dementia not otherwise specified (70 and 72%, respectively). Dementia in the same woman was first mentioned an average 1.6 (SD 2.6) years earlier in primary care (CPRD) than in hospital (HES) data. Age-specific rates for dementia based on the hospital admission data were lower than the rates based on the primary care data, but were similar if the delay in recording in HES was taken into account.

Conclusions: Dementia recorded in routinely collected NHS hospital admission data for women in England agrees well with primary care records of dementia assessed separately from two different sources, and is sufficiently reliable for epidemiological research.

Keywords: Clinical Practice Research Datalink; Cohort studies; Dementia; Electronic health record; Hospital Episode Statistics.

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Figures

Fig. 1
Fig. 1
Million Women Study participants included in data comparisons. * indicates by chance, three women were included both in the coded primary care (CPRD) and in the GP survey comparison
Fig. 2
Fig. 2
Age-specific incidence of dementia in the Million Women Study cohort, using different sources of data. A based on primary care data, B based only on hospital admissions data, C based on hospital admissions data, assuming a lag of 1.6 years between first diagnosis and admission to hospital, as suggested by primary care data
See this image and copyright information in PMC

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