Can markers of dementia progression and outcomes be derived from electronic health records? A systematic review

Conference:

SAPC ASM 2019 - Exeter

Talk Code:

P1.42

Presenter:

Professor Carolyn Chew-Graham

Twitter:

@CizCG

Co-authors:

Paul Campbell, Shula Baker, Suhail Tarafdar, Opeyemi Babatunde, Peter Croft, Carolyn A. Chew-Graham, Louise Robinson, Kate Walters, Swaran Singh, Scott Weich, Kelvin Jordan

Author institutions:

Keele University, Midlands Partnership NHS Foundation Trust, Newcastle University, University College London, University of Warwick, University of Sheffield

Problem

Understanding the progression of dementia and the factors that can change or alter progression is central to its management. Electronic health records (EHR) provide a potentially rich resource to measure progression. Currently there is an established body of EHR evidence that reports on risk factors predictive of dementia onset, however EHR research on post-diagnosis progression is less well established. The aim of this systematic review was to synthesise the available evidence on markers of progression and outcomes that may be identified within EHR for people with dementia.

Approach

A systematic search for observational studies was conducted in AGELINE, AMED, CINAHL, EMBASE, Ethos, PsychINFO, MEDLINE and Web of Science (from database inception to October 2018). Retrieved citations were screened against pre-specified inclusion/exclusion criteria independently by three reviewers. Eligible studies were required to have: 1) followed participants post-diagnosis of dementia, (2) used participant data obtained from EHR. A narrative synthesis of extracted data was conducted. Identified markers of progression and outcomes were mapped on to an established framework of outcomes: the International Consortium of Health Outcome Measures for Dementia (ICHOM-D). This framework was developed by an international collaboration of experts (leading physicians and specialists in dementia, health measurement experts, patient groups) to create a “standard set” of outcomes and case mix variables to enable comparisons (e.g. health services, regions, countries). Domains included within ICHOM-D are clinical status, safety, sustainability, carer, symptoms, medication, quality of life, and functioning.

Findings

Interim results of this review identified 3167 potentially eligible papers. Screening resulted in 34 papers included within the analysis. Data extraction resulted in the identification of 153 potential prognostic markers or outcomes. Synthesis and mapping of these 153 markers and outcomes to the ICHOM-D domain framework indicated the majority of current dementia EHR focus is on 4 domains: symptoms (mostly comorbidities, 35.3%), sustainability (mostly healthcare utilisation in primary and secondary care, 21.6%), medication (e.g. acetylcholinesterase Inhibitors, psychotropic, drugs for associated comorbidities, 17.0%), safety (mostly drug safety and drug interactions, 15.0%). There was much less focus on quality of life (only quality of care assessments reported, 3.3%), functioning (e.g. indicators of advanced dementia, 3.3%), clinical status (mostly mortality, 3.3%) and carer (e.g. shared decision making, 1.3%).

Consequences

These results show that EHR capture important domains that may indicate prognosis and outcomes for those with dementia. However, our preliminary analysis indicates a lesser focus on certain important domains that would enable a complete consideration for dementia (e.g. quality of life, carer issues, clinical status, functional status). More work is now required to assess if these lesser reported domains can be captured within EHR as a first step to enable investigation of patient variation on the course of their dementia.

Submitted by:

Paul Campbell

Funding acknowledgement:

This work is supported by a grant from the Dunhill Medical Trust (RPGF 1711/11) to Professor Kelvin Jordan. The views and opinions expressed within this abstract are those of the authors and not necessarily the views of the Dunhill Medical Trust.