Markers of dementia-related health in primary care electronic health records

Abstract

Objectives

Identifying routinely recorded markers of poor health in patients with dementia may help treatment decisions and evaluation of earlier outcomes in research. Our objective was to determine whether a set of credible markers of dementia-related health could be identified from primary care electronic health records (EHR).

Methods

The study consisted of (i) rapid review of potential measures of dementia-related health used in EHR studies; (ii) consensus exercise to assess feasibility of identifying these markers in UK primary care EHR; (iii) development of UK EHR code lists for markers; (iv) analysis of a regional primary care EHR database to determine further potential markers; (v) consensus exercise to finalise markers and pool into higher domains; (vi) determination of 12-month prevalence of domains in EHR of 2328 patients with dementia compared to matched patients without dementia.

Results

Sixty-three markers were identified and mapped to 13 domains: Care; Home Pressures; Severe Neuropsychiatric; Neuropsychiatric; Cognitive Function; Daily Functioning; Safety; Comorbidity; Symptoms; Diet/Nutrition; Imaging; Increased Multimorbidity; Change in Dementia Drug. Comorbidity was the most prevalent recorded domain in dementia (69%). Home Pressures were the least prevalent domain (1%). Ten domains had a statistically significant higher prevalence in dementia patients, one (Comorbidity) was higher in non-dementia patients, and two (Home Pressures, Diet/Nutrition) showed no association with dementia.

Conclusions

EHR captures important markers of dementia-related health. Further research should assess if they indicate dementia progression. These markers could provide the basis for identifying individuals at risk of faster progression and outcome measures for use in research.

Keywords:

• Dementia
• prognosis
• electronic health records
• primary care
• outcomes

Acknowledgements

Informatics team at Keele University. The study team would also like to acknowledge the Patient and Public Involvement and Engagement Dementia Group within the School of Primary, Community and Social Care for their input into the development of the rapid literature review.

Ethical approval

CiPCA Research database ethics approval, North West - Haydock REC ref: 17/NW/0232.

Contributions

Study was derived and planned by PCa, CCG, PCr, MF, SS, AS, KW, SW, and KPJ. Rapid literature review was led by STB, ST, OB, CCG, and PCa. TR-M and KPJ performed analysis of CiPCA. All authors contributed to development of markers and domains and the codelists. PCa, KPJ, MM, and TR-M drafted the paper and all authors commented on subsequent draft versions and approved final version.

Disclosure statement

LR has a National Institute for Health Research Senior Investigator award; no other relationships or activities that could appear to have influenced the submitted work.

Data sharing

The Read codes for dementia and the markers are available at www.keele.ac.uk/mrr/morbiditydefinitions or by contacting the authors. CiPCA data cannot be shared due to the conditions of its ethics approval.

Additional information

Funding

This work was supported by The Dunhill Medical Trust [RPGF 1711/11]. KPJ and CCG are supported by matched funding awarded to the NIHR Applied Research Collaboration (West Midlands). The views and opinions expressed are those of the authors and not necessarily the views of The Dunhill Medical Trust, the NHS, the NIHR or the Department of Health and Social Care. CiPCA funded by the Keele University School of Primary, Community and Social Care, and the Primary Care Research Consortium