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Patient and family preferences about place of end-of-life care and death

Bibliographic Details
Main Author: Pinto, Sara
Publication Date: 2024
Other Authors: Lopes, Sílvia, de Sousa, Andrea Bruno, Delalibera, Mayra, Gomes, Barbara
Format: Other
Language: eng
Source: Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
Download full: http://hdl.handle.net/10362/168863
Summary: Funding Information: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) at www.icmje.org/disclosure-of-interest/. BG is first author of one included systematic review. She did not take part in the selection, quality assessment, data extraction, analysis or conclusions in relation to this study. The authors thank Edoardo Aromataris (Director of Synthesis Science at the JBI, University of Adelaide), Kawaldip Sehmi (Chief Executive Officer of IAPO), Stecy Yghemonos (Director of Eurocarers), Isabel Andrade (Head Librarian at Nova National School of Public Health, Universidade Nova de Lisboa) and Barbara Antunes (Visiting Researcher at the University of Cambridge) for their contribution to the protocol and review development. This work is part of the project ´EOLinPLACE: Choice of where we die: a classification reform to discern diversity in individual end of life pathways´, which has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 948609). The funder had no role in the protocol development and in the review execution, analysis, interpretation of the data, or decision to submit results. BG (the guarantor of the review) declares that the manuscript is an honest, accurate, and transparent account of the study being reported; no important aspects of the study have been omitted and any discrepancies from the study as planned (and, if relevant, registered) have been explained. Funding Information: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) at www.icmje.org/disclosure-of-interest/. BG is first author of one included systematic review. She did not take part in the selection, quality assessment, data extraction, analysis or conclusions in relation to this study. The authors thank Edoardo Aromataris (Director of Synthesis Science at the JBI, University of Adelaide), Kawaldip Sehmi (Chief Executive Officer of IAPO), Stecy Yghemonos (Director of Eurocarers), Isabel Andrade (Head Librarian at Nova National School of Public Health, Universidade Nova de Lisboa) and Barbara Antunes (Visiting Researcher at the University of Cambridge) for their contribution to the protocol and review development. This work is part of the project ´EOLinPLACE: Choice of where we die: a classification reform to discern diversity in individual end of life pathways´, which has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 948609). The funder had no role in the protocol development and in the review execution, analysis, interpretation of the data, or decision to submit results. BG (the guarantor of the review) declares that the manuscript is an honest, accurate, and transparent account of the study being reported; no important aspects of the study have been omitted and any discrepancies from the study as planned (and, if relevant, registered) have been explained. Publisher Copyright: © 2024 The Authors
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spelling Patient and family preferences about place of end-of-life care and deathan umbrella reviewhospice carepalliative carePatient preferencesystematic reviewterminal careNursing(all)Clinical NeurologyAnesthesiology and Pain MedicineSDG 3 - Good Health and Well-beingFunding Information: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) at www.icmje.org/disclosure-of-interest/. BG is first author of one included systematic review. She did not take part in the selection, quality assessment, data extraction, analysis or conclusions in relation to this study. The authors thank Edoardo Aromataris (Director of Synthesis Science at the JBI, University of Adelaide), Kawaldip Sehmi (Chief Executive Officer of IAPO), Stecy Yghemonos (Director of Eurocarers), Isabel Andrade (Head Librarian at Nova National School of Public Health, Universidade Nova de Lisboa) and Barbara Antunes (Visiting Researcher at the University of Cambridge) for their contribution to the protocol and review development. This work is part of the project ´EOLinPLACE: Choice of where we die: a classification reform to discern diversity in individual end of life pathways´, which has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 948609). The funder had no role in the protocol development and in the review execution, analysis, interpretation of the data, or decision to submit results. BG (the guarantor of the review) declares that the manuscript is an honest, accurate, and transparent account of the study being reported; no important aspects of the study have been omitted and any discrepancies from the study as planned (and, if relevant, registered) have been explained. Funding Information: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) at www.icmje.org/disclosure-of-interest/. BG is first author of one included systematic review. She did not take part in the selection, quality assessment, data extraction, analysis or conclusions in relation to this study. The authors thank Edoardo Aromataris (Director of Synthesis Science at the JBI, University of Adelaide), Kawaldip Sehmi (Chief Executive Officer of IAPO), Stecy Yghemonos (Director of Eurocarers), Isabel Andrade (Head Librarian at Nova National School of Public Health, Universidade Nova de Lisboa) and Barbara Antunes (Visiting Researcher at the University of Cambridge) for their contribution to the protocol and review development. This work is part of the project ´EOLinPLACE: Choice of where we die: a classification reform to discern diversity in individual end of life pathways´, which has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 948609). The funder had no role in the protocol development and in the review execution, analysis, interpretation of the data, or decision to submit results. BG (the guarantor of the review) declares that the manuscript is an honest, accurate, and transparent account of the study being reported; no important aspects of the study have been omitted and any discrepancies from the study as planned (and, if relevant, registered) have been explained. Publisher Copyright: © 2024 The AuthorsContext: The place where people are cared towards the end of their life and die is a complex phenomenon, requiring a deeper understanding. Honoring preferences is critical for the delivery of high-quality care. Objectives: In this umbrella review we examine and synthesize the evidence regarding preferences about place of end-of-life care and death of patients with life-threatening illnesses and their families. Methods: Following the Joanna Briggs Institute methodology, we conducted a comprehensive search for systematic reviews in PsycINFO, MEDLINE, EMBASE, CINAHL, Epistemonikos, and PROSPERO without language restrictions. Results: The search identified 15 reviews (10 high-quality, three with meta-analysis), covering 229 nonoverlapping primary studies. Home is the most preferred place of end-of-life care for both patients (11%–89%) and family members (23%–84%). It is also the most preferred place of death (patient estimates from two meta-analyses: 51%–55%). Hospitals and hospice/palliative care facilities are preferred by substantial minorities. Reasons and factors affecting preferences include illness-related, individual, and environmental. Differences between preferred places of care and death are underexplored and the evidence remains inconclusive about changes over time. Congruence between preferred and actual place of death ranges 21%-100%, is higher in studies since 2004 and a meta-analysis shows noncancer patients are at higher risk of incongruence than cancer patients (OR 1.23, 95% CI: 1.01–1.49, I2 = 62%). Conclusion: These findings are a crucial starting point to address gaps and enhance strategies to align care with patient and family preferences. To accurately identify patient and family preferences is an important opportunity to change their lives positively.Comprehensive Health Research Centre (CHRC) - Pólo ENSPCentro de Investigação em Saúde Pública (CISP/PHRC)Escola Nacional de Saúde Pública (ENSP)RUNPinto, SaraLopes, Sílviade Sousa, Andrea BrunoDelalibera, MayraGomes, Barbara2024-06-20T22:27:25Z2024-052024-05-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/otherapplication/pdfhttp://hdl.handle.net/10362/168863eng0885-3924PURE: 93697348https://doi.org/10.1016/j.jpainsymman.2024.01.014info:eu-repo/semantics/openAccessreponame:Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)instname:FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologiainstacron:RCAAP2024-10-07T01:37:42Zoai:run.unl.pt:10362/168863Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireinfo@rcaap.ptopendoar:https://opendoar.ac.uk/repository/71602025-05-28T17:56:24.702196Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) - FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologiafalse
dc.title.none.fl_str_mv Patient and family preferences about place of end-of-life care and death
an umbrella review
title Patient and family preferences about place of end-of-life care and death
spellingShingle Patient and family preferences about place of end-of-life care and death
Pinto, Sara
hospice care
palliative care
Patient preference
systematic review
terminal care
Nursing(all)
Clinical Neurology
Anesthesiology and Pain Medicine
SDG 3 - Good Health and Well-being
title_short Patient and family preferences about place of end-of-life care and death
title_full Patient and family preferences about place of end-of-life care and death
title_fullStr Patient and family preferences about place of end-of-life care and death
title_full_unstemmed Patient and family preferences about place of end-of-life care and death
title_sort Patient and family preferences about place of end-of-life care and death
author Pinto, Sara
author_facet Pinto, Sara
Lopes, Sílvia
de Sousa, Andrea Bruno
Delalibera, Mayra
Gomes, Barbara
author_role author
author2 Lopes, Sílvia
de Sousa, Andrea Bruno
Delalibera, Mayra
Gomes, Barbara
author2_role author
author
author
author
dc.contributor.none.fl_str_mv Comprehensive Health Research Centre (CHRC) - Pólo ENSP
Centro de Investigação em Saúde Pública (CISP/PHRC)
Escola Nacional de Saúde Pública (ENSP)
RUN
dc.contributor.author.fl_str_mv Pinto, Sara
Lopes, Sílvia
de Sousa, Andrea Bruno
Delalibera, Mayra
Gomes, Barbara
dc.subject.por.fl_str_mv hospice care
palliative care
Patient preference
systematic review
terminal care
Nursing(all)
Clinical Neurology
Anesthesiology and Pain Medicine
SDG 3 - Good Health and Well-being
topic hospice care
palliative care
Patient preference
systematic review
terminal care
Nursing(all)
Clinical Neurology
Anesthesiology and Pain Medicine
SDG 3 - Good Health and Well-being
description Funding Information: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) at www.icmje.org/disclosure-of-interest/. BG is first author of one included systematic review. She did not take part in the selection, quality assessment, data extraction, analysis or conclusions in relation to this study. The authors thank Edoardo Aromataris (Director of Synthesis Science at the JBI, University of Adelaide), Kawaldip Sehmi (Chief Executive Officer of IAPO), Stecy Yghemonos (Director of Eurocarers), Isabel Andrade (Head Librarian at Nova National School of Public Health, Universidade Nova de Lisboa) and Barbara Antunes (Visiting Researcher at the University of Cambridge) for their contribution to the protocol and review development. This work is part of the project ´EOLinPLACE: Choice of where we die: a classification reform to discern diversity in individual end of life pathways´, which has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 948609). The funder had no role in the protocol development and in the review execution, analysis, interpretation of the data, or decision to submit results. BG (the guarantor of the review) declares that the manuscript is an honest, accurate, and transparent account of the study being reported; no important aspects of the study have been omitted and any discrepancies from the study as planned (and, if relevant, registered) have been explained. Funding Information: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) at www.icmje.org/disclosure-of-interest/. BG is first author of one included systematic review. She did not take part in the selection, quality assessment, data extraction, analysis or conclusions in relation to this study. The authors thank Edoardo Aromataris (Director of Synthesis Science at the JBI, University of Adelaide), Kawaldip Sehmi (Chief Executive Officer of IAPO), Stecy Yghemonos (Director of Eurocarers), Isabel Andrade (Head Librarian at Nova National School of Public Health, Universidade Nova de Lisboa) and Barbara Antunes (Visiting Researcher at the University of Cambridge) for their contribution to the protocol and review development. This work is part of the project ´EOLinPLACE: Choice of where we die: a classification reform to discern diversity in individual end of life pathways´, which has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 948609). The funder had no role in the protocol development and in the review execution, analysis, interpretation of the data, or decision to submit results. BG (the guarantor of the review) declares that the manuscript is an honest, accurate, and transparent account of the study being reported; no important aspects of the study have been omitted and any discrepancies from the study as planned (and, if relevant, registered) have been explained. Publisher Copyright: © 2024 The Authors
publishDate 2024
dc.date.none.fl_str_mv 2024-06-20T22:27:25Z
2024-05
2024-05-01T00:00:00Z
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PURE: 93697348
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