Place of death in children and young people with cancer and implications for end of life care: A population-based study in England, 1993-2014

Wei Gao; Julia Verne; Janet Peacock; Charles Stiller; Claudia Wells; Anne Greenough; Irene J. Higginson

doi:10.1186/s12885-016-2695-1

Place of death in children and young people with cancer and implications for end of life care: A population-based study in England, 1993-2014

Wei Gao^*, Julia Verne, Janet Peacock, Charles Stiller, Claudia Wells, Anne Greenough, Irene J. Higginson

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

26 Citations (Scopus)

Abstract

Background: Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer. Methods: Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N=12,774) were extracted from the death registration database of the Office for National Statistics (ONS). Results: Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993-2000 to 13 % in 2005-2014, and home deaths fluctuated at around 40 %. Those aged 0-19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23-1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18-0.75, hospice: 0.04-0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76-0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time. Conclusions: Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.

Original language	English
Article number	727
Journal	BMC Cancer
Volume	16
Issue number	1
DOIs	https://doi.org/10.1186/s12885-016-2695-1
Publication status	Published - 19 Sept 2016

Bibliographical note

Funding Information:
This work is part of the GUIDE_Care Children and Young People project – funded by Marie Curie Cancer Care - A15822.

Funding Information:
The investigators of the GUIDE_Care Children and Young People project: Wei Gao(PI), Irene J Higginson(co-PI), Janet Peacock, Anne Greenough, Julia Verne and Myer Glickman, thank the following members of the Project Advisory Group(PAG): Tony Bonser, Dr Emma Gordon, Fiona Grove, Dr Shaheen Khan, Dr Joanna Laddie, Katie Lindsey, Dr Helen McElroy, Mrs Carolyn Morris, Mr Andy Pring. We thank Joanna Davies for her assistance with the project and data management, Clare Pearson for assisting with the shapefiles, and Dr Tara Whitburn for helping with the ICD-9/10 codes for cancer. We thank the ONS for supplying data and providing technical support in data related issues. Professor Mike Stevens at University of Bristol, Dr Martin Mccabe at University of Manchester, Dr Sujith Samarasinghe at Great Ormond Street Hospital for sharing their clinical expertise and perspectives on cancer grouping; Dr Lorna Fraser at University of York for the inspiring discussions on the preliminary results. Prof Irene J Higginson is an NIHR Senior Investigator. The Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London is part of the National Institute for Health Research (NIHR), and is a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust. The National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) is based at Guy’s and St Thomas’ NHS Foundation Trust and King’s College London. This publication is independent research supported by the CLAHRC South London and the NIHR BRC. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.

Publisher Copyright:
© 2016 The Author(s).

Keywords

Cancer
Children and young people
End of life care
Inequality
Palliative care
Place of death

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1186/s12885-016-2695-1

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title = "Place of death in children and young people with cancer and implications for end of life care: A population-based study in England, 1993-2014",

abstract = "Background: Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer. Methods: Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N=12,774) were extracted from the death registration database of the Office for National Statistics (ONS). Results: Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993-2000 to 13 % in 2005-2014, and home deaths fluctuated at around 40 %. Those aged 0-19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23-1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18-0.75, hospice: 0.04-0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76-0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time. Conclusions: Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.",

keywords = "Cancer, Children and young people, End of life care, Inequality, Palliative care, Place of death",

author = "Wei Gao and Julia Verne and Janet Peacock and Charles Stiller and Claudia Wells and Anne Greenough and Higginson, {Irene J.}",

note = "Funding Information: This work is part of the GUIDE_Care Children and Young People project – funded by Marie Curie Cancer Care - A15822. Funding Information: The investigators of the GUIDE_Care Children and Young People project: Wei Gao(PI), Irene J Higginson(co-PI), Janet Peacock, Anne Greenough, Julia Verne and Myer Glickman, thank the following members of the Project Advisory Group(PAG): Tony Bonser, Dr Emma Gordon, Fiona Grove, Dr Shaheen Khan, Dr Joanna Laddie, Katie Lindsey, Dr Helen McElroy, Mrs Carolyn Morris, Mr Andy Pring. We thank Joanna Davies for her assistance with the project and data management, Clare Pearson for assisting with the shapefiles, and Dr Tara Whitburn for helping with the ICD-9/10 codes for cancer. We thank the ONS for supplying data and providing technical support in data related issues. Professor Mike Stevens at University of Bristol, Dr Martin Mccabe at University of Manchester, Dr Sujith Samarasinghe at Great Ormond Street Hospital for sharing their clinical expertise and perspectives on cancer grouping; Dr Lorna Fraser at University of York for the inspiring discussions on the preliminary results. Prof Irene J Higginson is an NIHR Senior Investigator. The Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London is part of the National Institute for Health Research (NIHR), and is a partnership between King{\textquoteright}s Health Partners, St. George{\textquoteright}s, University London, and St George{\textquoteright}s Healthcare NHS Trust. The National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) is based at Guy{\textquoteright}s and St Thomas{\textquoteright} NHS Foundation Trust and King{\textquoteright}s College London. This publication is independent research supported by the CLAHRC South London and the NIHR BRC. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health. Publisher Copyright: {\textcopyright} 2016 The Author(s).",

year = "2016",

month = sep,

day = "19",

doi = "10.1186/s12885-016-2695-1",

language = "English",

volume = "16",

journal = "BMC Cancer",

issn = "1471-2407",

publisher = "BioMed Central",

number = "1",

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TY - JOUR

T1 - Place of death in children and young people with cancer and implications for end of life care

T2 - A population-based study in England, 1993-2014

AU - Gao, Wei

AU - Verne, Julia

AU - Peacock, Janet

AU - Stiller, Charles

AU - Wells, Claudia

AU - Greenough, Anne

AU - Higginson, Irene J.

N1 - Funding Information: This work is part of the GUIDE_Care Children and Young People project – funded by Marie Curie Cancer Care - A15822. Funding Information: The investigators of the GUIDE_Care Children and Young People project: Wei Gao(PI), Irene J Higginson(co-PI), Janet Peacock, Anne Greenough, Julia Verne and Myer Glickman, thank the following members of the Project Advisory Group(PAG): Tony Bonser, Dr Emma Gordon, Fiona Grove, Dr Shaheen Khan, Dr Joanna Laddie, Katie Lindsey, Dr Helen McElroy, Mrs Carolyn Morris, Mr Andy Pring. We thank Joanna Davies for her assistance with the project and data management, Clare Pearson for assisting with the shapefiles, and Dr Tara Whitburn for helping with the ICD-9/10 codes for cancer. We thank the ONS for supplying data and providing technical support in data related issues. Professor Mike Stevens at University of Bristol, Dr Martin Mccabe at University of Manchester, Dr Sujith Samarasinghe at Great Ormond Street Hospital for sharing their clinical expertise and perspectives on cancer grouping; Dr Lorna Fraser at University of York for the inspiring discussions on the preliminary results. Prof Irene J Higginson is an NIHR Senior Investigator. The Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London is part of the National Institute for Health Research (NIHR), and is a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust. The National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) is based at Guy’s and St Thomas’ NHS Foundation Trust and King’s College London. This publication is independent research supported by the CLAHRC South London and the NIHR BRC. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health. Publisher Copyright: © 2016 The Author(s).

PY - 2016/9/19

Y1 - 2016/9/19

N2 - Background: Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer. Methods: Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N=12,774) were extracted from the death registration database of the Office for National Statistics (ONS). Results: Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993-2000 to 13 % in 2005-2014, and home deaths fluctuated at around 40 %. Those aged 0-19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23-1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18-0.75, hospice: 0.04-0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76-0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time. Conclusions: Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.

AB - Background: Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer. Methods: Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N=12,774) were extracted from the death registration database of the Office for National Statistics (ONS). Results: Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993-2000 to 13 % in 2005-2014, and home deaths fluctuated at around 40 %. Those aged 0-19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23-1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18-0.75, hospice: 0.04-0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76-0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time. Conclusions: Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.

KW - Cancer

KW - Children and young people

KW - End of life care

KW - Inequality

KW - Palliative care

KW - Place of death

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Place of death in children and young people with cancer and implications for end of life care: A population-based study in England, 1993-2014

Abstract

Bibliographical note

Keywords

UN SDGs

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