Evidence map›Paper›PMID 40044196›Full record

ArticleBMJ open2025

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.

Marcel Alied, Sophie Law-Clucas, Matthew J Allsop, Christina Ramsenthaler, Peter May, Alastair Bearne, Margaret Powell, John Rosling, Rashmi Kumar, Lisa Scerri and 9 more

Abstract readClinical Trial Protocol
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

19 authors.

Marcel AliedHealth Informatics, Division of Clinical Studies, The Institute of Cancer Research, London, UK.ORCID http://orcid.org/0000-0002-7725-4127
Sophie Law-ClucasWolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.ORCID http://orcid.org/0000-0002-8221-084X
Matthew J AllsopAcademic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.ORCID http://orcid.org/0000-0002-7399-0194
Christina RamsenthalerWolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.ORCID http://orcid.org/0000-0002-9996-1818
Peter MayCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Alastair BearnePatient and Public Involvement Contributor, London, UK.
Margaret PowellPatient and Public Involvement Contributor, London, UK.
John RoslingPatient and Public Involvement Contributor, London, UK.
Rashmi KumarPatient and Public Involvement Contributor, London, UK.
Lisa ScerriThe Royal Marsden NHS Foundation Trust, London, UK.
Rebekah WilliamsThe Royal Marsden NHS Foundation Trust, London, UK.
Katherine E SleemanCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Diane LavertyNurse Consultant, London, UK.
Denzil JamesThe Royal Marsden NHS Foundation Trust, London, UK.
Julia VerneOffice for Health Improvement and Disparities, London, Greater London, UK.
Kavitha SaravanakumarDirector of Business Intelligence, NHS North West London, London, London, UK.
Ceire E CostelloeHealth Informatics, Division of Clinical Studies, The Institute of Cancer Research, London, UK.
Joanne DroneyThe Royal Marsden NHS Foundation Trust, London, UK joanne.droney@rmh.nhs.uk.ORCID http://orcid.org/0000-0002-5709-1703
Jonathan KoffmanWolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionElectronic 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.

Indexed as

Advance Care PlanningPalliative CareElectronic Health RecordsEnglandHumansMulticenter Studies as TopicObservational Studies as TopicPrimary Health CareResearch DesignRetrospective StudiesSecondary Health CareTerminal CareDecision MakingDigital TechnologyElectronic Health RecordsEPIDEMIOLOGIC STUDIESHealth Services for the AgedPALLIATIVE CARE

Identifiers

PMID40044196
PMCPMC11883539

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.