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Towards cataloguing and characterising advance care planning and end-of-life care resources
BACKGROUND: Resources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their pur...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9706845/ https://www.ncbi.nlm.nih.gov/pubmed/36447187 http://dx.doi.org/10.1186/s12904-022-01102-3 |
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author | Ramirez-Valdez, Edric Aram Leong, Clare Wu, Frances Ball, Sarah Maistrello, Giulia Martin, Graham Fritz, Zoë |
author_facet | Ramirez-Valdez, Edric Aram Leong, Clare Wu, Frances Ball, Sarah Maistrello, Giulia Martin, Graham Fritz, Zoë |
author_sort | Ramirez-Valdez, Edric Aram |
collection | PubMed |
description | BACKGROUND: Resources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience. AIM: To collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families. METHODS: Rapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services. RESULTS: 246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare. CONCLUSIONS: We present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-022-01102-3. |
format | Online Article Text |
id | pubmed-9706845 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-97068452022-11-29 Towards cataloguing and characterising advance care planning and end-of-life care resources Ramirez-Valdez, Edric Aram Leong, Clare Wu, Frances Ball, Sarah Maistrello, Giulia Martin, Graham Fritz, Zoë BMC Palliat Care Research BACKGROUND: Resources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience. AIM: To collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families. METHODS: Rapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services. RESULTS: 246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare. CONCLUSIONS: We present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-022-01102-3. BioMed Central 2022-11-29 /pmc/articles/PMC9706845/ /pubmed/36447187 http://dx.doi.org/10.1186/s12904-022-01102-3 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Ramirez-Valdez, Edric Aram Leong, Clare Wu, Frances Ball, Sarah Maistrello, Giulia Martin, Graham Fritz, Zoë Towards cataloguing and characterising advance care planning and end-of-life care resources |
title | Towards cataloguing and characterising advance care planning and end-of-life care resources |
title_full | Towards cataloguing and characterising advance care planning and end-of-life care resources |
title_fullStr | Towards cataloguing and characterising advance care planning and end-of-life care resources |
title_full_unstemmed | Towards cataloguing and characterising advance care planning and end-of-life care resources |
title_short | Towards cataloguing and characterising advance care planning and end-of-life care resources |
title_sort | towards cataloguing and characterising advance care planning and end-of-life care resources |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9706845/ https://www.ncbi.nlm.nih.gov/pubmed/36447187 http://dx.doi.org/10.1186/s12904-022-01102-3 |
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