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Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care
Open accessAbstract
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.
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Dementia is known to be under diagnosed, with up to 50% of people with dementia undiagnosed at any time.
“However, dementia is known to be under diagnosed, with up to 50% of people with dementia undiagnosed at any time.34”
From Anticholinergic drugs and risk of dementia: case-control study (2018) · cites this paper as [34]
The Discussion (page unavailable) says clinically diagnosed dementia rates are lower than rates found through case finding because some people with early dementia may not have been diagnosed. It does not give an estimate that up to 50% of people with dementia are undiagnosed at any time. (LLM, conf=0.86)
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Data Resource Profile: Clinical Practice Research Datalink (CPRD)
Herrett, E., Gallagher, A. M., Bhaskaran, K., Forbes, H., Mathur, R., van Staa, T., & Smeeth, L. (2015) · International Journal of Epidemiology · doi:10.1093/ije/dyv098 · Cited by 2,667 · cited 2×
“Active coverage is around 7% of the UK population, with research-useable data available for some 11 m people [5, 6].”
BackgroundMethodValidation and validity of diagnoses in the General Practice Research Database: a systematic review
Herrett, E., Thomas, S. L., Schoonen, W. M., Smeeth, L., & Hall, A. J. (2010) · British Journal of Clinical Pharmacology · doi:10.1111/j.1365-2125.2009.03537.x · Cited by 1,109
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Anticholinergic drugs and risk of dementia: case-control study
Richardson, K., Fox, C., Maidment, I., Steel, N., Loke, Y. K., Arthur, A., Myint, P. K., Grossi, C. M., Mattishent, K., Bennett, K., et al. (2018) · BMJ · doi:10.1136/bmj.k1315 · Cited by 520
Biobank, O. B. O. D. P. U. A. U., Wilkinson, T., Schnier, C., Bush, K., Rannikmäe, K., Henshall, D. E., Lerpiniere, C., Allen, N. E., Flaig, R., Russ, T. C., et al. (2019) · European Journal of Epidemiology · doi:10.1007/s10654-019-00499-1 · Cited by 452
Self-citationObesity trajectories and risk of dementia: 28 years of follow-up in the Whitehall II study
Singh‐Manoux, A., Dugravot, A., Shipley, M., Brunner, E. J., Elbaz, A., Sabia, S., & Kivimaki, M. (2018) · Alzheimer's & Dementia · doi:10.1016/j.jalz.2017.06.2637 · Cited by 401
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Wilkinson, T., Ly, A., Schnier, C., Rannikmäe, K., Bush, K., Brayne, C., Quinn, T. J., Sudlow, C. L. M., & On behalf of the UK Biobank Neurodegenerative Outcomes Group and Dementias Platform UK (2018) · Alzheimer's & Dementia · doi:10.1016/j.jalz.2018.02.016 · Cited by 279
Self-citationCognitive and social activities and long-term dementia risk: the prospective UK Million Women Study
Floud, S., Balkwill, A., Sweetland, S., Brown, A., Reus, E. M., Hofman, A., Blacker, D., Kivimaki, M., Green, J., Peto, R., et al. (2021) · The Lancet Public Health · doi:10.1016/s2468-2667(20)30284-x · Cited by 83
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Metadata
- Authors
- Brown, A., Kirichek, O., Balkwill, A., Reeves, G., Beral, V., Sudlow, C., Gallacher, J., & Green, J.
- Affiliations
- University of Oxford (GB)
- University of Edinburgh (GB)
- Corresponding author
- Green, Jane
- ORCID
- Venue
- Emerging Themes in Epidemiology
- Published
- 2016-10-28
- Volume
- 13
- Issue
- 1
- Pages
- 11-11
- ISSN
- 1742-7622 (ISSN-L)
- PMC
- PMC5084368
- OpenAlex
- W2540440652
- Cited by
- 78
- References
- 2
- Citations by year
- 2026: 7 · 2025: 7 · 2024: 6 · 2023: 8 · 2022: 11 · 2021: 9 · 2020: 11 · 2019: 10 · 2018: 3 · 2017: 6
- FWCI
- 4.37
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- Emerging Themes in Epidemiology (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Oxford University Research Archive (ORA) (University of Oxford) (submittedVersion, cc-by)
- Edinburgh Research Explorer (University of Edinburgh) (submittedVersion, other-oa)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Cancer Research UK (C570/A11692)
- Medical Research Council (MR/K02700X/1)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Keywords
- dementia, hospital admission data, primary care records, Hospital Episode Statistics, Clinical Practice Research Datalink, diagnostic agreement, data linkage, Alzheimer's disease, vascular dementia, memory loss, Million Women Study, women, delayed diagnosis
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