title: Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care.
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.
authors: Cancer Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Richard Doll Building, Roosevelt Drive, Oxford, OX3 7LF UK.
authors: Anna
authors: A
authors: Brown
authors: Cancer Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Richard Doll Building, Roosevelt Drive, Oxford, OX3 7LF UK.
authors: Oksana
authors: O
authors: Kirichek
authors: Cancer Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Richard Doll Building, Roosevelt Drive, Oxford, OX3 7LF UK.
authors: Angela
authors: A
authors: Balkwill
authors: Cancer Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Richard Doll Building, Roosevelt Drive, Oxford, OX3 7LF UK.
authors: Gillian
authors: G
authors: Reeves
authors: Cancer Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Richard Doll Building, Roosevelt Drive, Oxford, OX3 7LF UK.
authors: Valerie
authors: V
authors: Beral
authors: Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.
authors: Cathie
authors: C
authors: Sudlow
authors: Department of Psychiatry, University of Oxford, Oxford, UK.
authors: John
authors: J
authors: Gallacher
authors: Cancer Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Richard Doll Building, Roosevelt Drive, Oxford, OX3 7LF UK.
authors: Jane
authors: J
authors: Green
keywords: Clinical Practice Research Datalink; Cohort studies; Dementia; Electronic health record; Hospital Episode Statistics