Evidence map›Paper›PMID 38357678›Full record

ArticlePalliative care and social practice2024

EOLinPLACE: an international research project to reform the way dying places are classified and understood.

Elizabeth Namukwaya, Andrea Bruno de Sousa, Sílvia Lopes, Dorothea Petra Touwen, Jenny Theodora van der Steen, Emmanuelle Bélanger, Joanna Brooks, Stecy Yghemonos, Kawaldip Sehmi, Barbara Gomes

Open access · goldAbstract read
In one paragraph

Article in Palliative care and social practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed, 1 pooled it
2.2field-weighted citation impact, top 14% of its field
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 synthesis or guideline pooled it, 4 citations in OpenAlex.

  1. Pooled it
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

10 authors at 9 institutions in 5 countries.

Elizabeth NamukwayaFaculty of Medicine, University of Coimbra, Coimbra, Portugal Department of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda.ORCID https://orcid.org/0000-0001-5241-2742
Andrea Bruno de SousaFaculty of Medicine, University of Coimbra, Coimbra, Portugal.
Sílvia LopesNOVA National School of Public Health, Public Health Research Centre, Comprehensive Health Research Center, CHRC, NOVA University Lisbon, Lisbon, Portugal.
Dorothea Petra TouwenDepartment of Medical Ethics and Health Law, Leiden University Medical Center, Leiden, the Netherlands.
Jenny Theodora van der SteenDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands.
Emmanuelle BélangerCenter for Gerontology and Healthcare Research, Brown University School of Public Health, Providence, RI, USA.
Joanna BrooksPopulation Health and Palliative Medicine, Master of Health Services Administration, University of Kansas School of Medicine, Kansas City, KS, USA.
Stecy YghemonosEurocarers, Brussels, Belgium.
Kawaldip SehmiInternational Alliance of Patients' Organizations, London, UK.
Barbara GomesFaculty of Medicine, University of Coimbra, Pólo III, Sub-Unidade 3, Azinhaga de Santa Comba, Coimbra 3000-548, Portugal Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Brown University · USKing's College London · GBLeiden University Medical Center · NLMakerere University · UGRadboud University Nijmegen · NLThe Patients Association · GBUniversidade Nova de Lisboa · PTUniversity of Coimbra · PTUniversity of Kansas · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Whenever possible, a person should die where they feel it is the right place to be. There is substantial global variation in home death percentages but it is unclear whether these differences reflect preferences, and there are major limitations in how the place of death is classified and compared across countries. Objectives: EOLinPLACE is an international interdisciplinary research project funded by the European Research Council aiming to create a solid base for a ground-breaking international classification tool that will enable the mapping of preferred and actual places towards death. Design: Mixed-methods observational research. Methods and analysis: We combine classic methods of developing health classifications with a bottom-up participatory research approach, working with international organizations representing patients and informal carers [International Alliance of Patients' Organizations (IAPO) and Eurocarers]. First, we will conduct an international comparative analysis of existing classification systems and routinely collected death certificate data on place of death. Secondly, we will conduct a mixed-methods study (ethnography followed by longitudinal quantitative study) in four countries (the Netherlands, Portugal, Uganda and the United States), to compare the preferences and experiences of patients with life-threatening conditions and their families. Thirdly, based on the generated evidence, we will build a contemporary classification of dying places; assess its content validity through focus groups with patients, carers and other stakeholders; and evaluate it in a psychometric study to examine construct validity, reliability, responsiveness, data quality and interpretability. Ethics: Approved by the ethics committee of the University of Coimbra, Faculty of Medicine (CE-068-2022) and committees in each of the participating countries. Discussion: The findings will provide a deeper understanding of the diversity in individual end-of-life pathways. They will enable key developments such as measurement of progress towards achievement of preferences when care can be planned. The project will open new directions in how to care for the dying. Trial registration: Research Registry UIN 9213.

Indexed as

classificationdeathdeath certificatesmortalitypalliative carepatient preferenceterminal care

Identifiers

PMID38357678
PMCPMC10865961
OpenAlexW4391783958

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.