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  5. Evaluation of Electronic Palliative Care Coordination Systems to support advance care planning for people living with life-threatening conditions (PREPARE): protocol for a multicentre observational study using routinely collected primary and secondary care data in England
 
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Evaluation of Electronic Palliative Care Coordination Systems to support advance care planning for people living with life-threatening conditions (PREPARE): protocol for a multicentre observational study using routinely collected primary and secondary care data in England
File(s)
e093175.full.pdf (865.07 KB)
Published version
Author(s)
Alied, Marcel
Law-Clucas, Sophie
Allsop, Matthew J
Ramsenthaler, Christina
May, Peter
more
Type
Journal Article
Abstract
Introduction Electronic Palliative Care Coordination Systems (EPaCCS) are electronic registers that aim to facilitate documentation and sharing of up-to-date information about patients’ end-of-life preferences and plans for care among different health services. They aim to improve patients’ experiences and outcomes and mitigate costs linked to undesired aggressive care. However, evidence on the equitable delivery of EPaCCS and the extent to which advance care planning (ACP) enhances end-of-life care remains sparse. This study aims to explore the effect of EPaCCS on healthcare outcomes, service utilisation, and costs. It will also estimate the association between social determinants of health and the content and use of EPaCCS.

Methods and analysis The PREPARE project is a retrospective observational cohort study conducted in two phases. We will analyse routinely collected data from three EPaCCS registers from London, Bradford and Leeds. The first phase will use descriptive analysis to describe the completeness of EPaCCS, the content of EPaCCS, and socio-demographic and clinical characteristics of individuals with EPaCCS, and will model the relationship between social determinants of health and completion of ACP components and the creation of EPaCCS. The second phase will use a natural experiment to compare quality indicators (place of death and hospital use) between individuals with EPaCCS and those without. The control groups will be identified through the Leeds decedent dataset and through linking the London EPaCCS register to an electronic record used in North West London. Also, we will quantify healthcare costs and outcomes.

Ethics and dissemination Research approval has been secured from the Health Research Authority (ref 24/LO/0194), London - South East Research Ethics Committee (ref 24/LO/0194) and Confidentiality Advisory Group (ref 24/CAG/0046). Dissemination of findings will occur through peer-reviewed publications, knowledge exchange events and collaborative efforts with patient and public involvement partners.
Date Issued
2025-03-01
Date Acceptance
2025-02-07
Citation
BMJ OPEN, 2025, 15 (3)
URI
https://hdl.handle.net/10044/1/125697
URL
https://bmjopen.bmj.com/content/15/3/e093175
DOI
https://www.dx.doi.org/10.1136/bmjopen-2024-093175
ISSN
2044-6055
Publisher
BMJ PUBLISHING GROUP
Journal / Book Title
BMJ OPEN
Volume
15
Issue
3
Copyright Statement
© Author(s) (or their employer(s)) 2025. Re-use permitted under CC BY. Published by BMJ Group.
License URL
http://creativecommons.org/licenses/by/4.0/
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/40044196
PII: bmjopen-2024-093175
Subjects
Decision Making
Digital Technology
Electronic Health Records
END
EPIDEMIOLOGIC STUDIES
General & Internal Medicine
GOOD DEATH
Health Services for the Aged
Life Sciences & Biomedicine
Medicine, General & Internal
PALLIATIVE CARE
PLACE
Science & Technology
Publication Status
Published
Coverage Spatial
England
Article Number
e093175
Date Publish Online
2025-03-05
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