Place of death of children with complex chronic conditions: cross-national study of 11 countries
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Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1–17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83–1.00) and Sweden (OR = 0.35, 95% CI: 0.15–0.83), girls had a significantly lower chance of dying at home than boys.
What is known:
• There is a scarcity of population-level studies investigating where children with CCC die in different countries.
• Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care.
What is new :
• There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common.
• In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.
KeywordsChildren Complex chronic conditions Cross-national Paediatric palliative care Place of death Population-level
Complex chronic conditions
We thank the following agencies for the delivery of the death certificate data: Belgium: Flemish Agency for Care and Health, Brussels Health and Social Observatory, French Community of Belgium; France: Inserm-CépiDc (Centre d’épidémiologie sur les causes médicales de décès, Institut national de la santé et de la recherche médicale); Italy: Italian National Institute of Statistics (unit for cause of death statistics); Spain (Andalusia): Instituto de Estadística y Cartografía de Andalucía; the Czech Republic: Institute of Health Information and Statistics of the Czech Republic (IHIS); the USA: Center for Disease Control and Prevention (CDC) based on Data Use Agreement; Canada: Statistics Canada; New Zealand: New Zealand Ministry of Health; Mexico: Secretaria de Salud and Sistema Nacional de Informacion en Salud; South Korea: Statistics Korea; Sweden: The National Board of Health and Welfare and Statistics, Sweden. We would also like to thank Guido Miccinesi, Luisa Frova, Rod McLeod, Lucas Morin and Regis Aubry for their help with the data acquisition, and finally, we thank Nick Guthrie at Key point languages for linguistic editing. Finally, we thank the Flanders Research Foundation for funding this study.
Drs. Håkanson, Öhlen, Cardenas-Turanzas, Wilson, Loucka, Giovannetti, Naylor, Rhee, Ramos, Teno, Houttekier and Cohen contributed to national data acquisition.
Drs. Håkanson and Cohen carried out the analyses.
Dr. Håkanson drafted and revised all versions and submitted the final version of the manuscript.
Drs. Deliens, Houttekier and Cohen conceptualized and designed the study.
All authors critically reviewed and revised the initial manuscript and approved the final manuscript as submitted.
Compliance with ethical standards
This work was supported by the Research Foundation Flanders (no grant number).
Conflict of interest
The authors declare that they have no conflicts of interest.
All procedures were in accordance with the ethical standards of each country and with the 1964 Helsinki declaration and its later amendments, or comparable ethical standards. The study was based on death certificate data and does therefore not include any procedures for informed consent. Formal ethical approvals were obtained from all countries prior to commencing.
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