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European Journal of Pediatrics

, Volume 176, Issue 3, pp 327–335 | Cite as

Place of death of children with complex chronic conditions: cross-national study of 11 countries

  • Cecilia Håkanson
  • Joakim Öhlén
  • Ulrika Kreicbergs
  • Marylou Cardenas-Turanzas
  • Donna M. Wilson
  • Martin Loucka
  • Sandra Frache
  • Lucia Giovannetti
  • Wayne Naylor
  • YongJoo Rhee
  • Miguel Ruiz Ramos
  • Joan Teno
  • Kim Beernaert
  • Luc Deliens
  • Dirk Houttekier
  • Joachim Cohen
Original Article

Abstract

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.

Conclusion: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally.

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.

Keywords

Children Complex chronic conditions Cross-national Paediatric palliative care Place of death Population-level 

Abbreviations

CCC

Complex chronic conditions

Notes

Acknowledgements

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.

Authors’ contributions

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

Funding

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.

Ethical approval

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.

Supplementary material

431_2016_2837_MOESM1_ESM.docx (17 kb)
Table S1 (DOCX 17 kb)
431_2016_2837_MOESM2_ESM.docx (16 kb)
Table S2 (DOCX 16 kb)
431_2016_2837_MOESM3_ESM.docx (18 kb)
Table S3 (DOCX 17 kb)
431_2016_2837_MOESM4_ESM.docx (17 kb)
Table S4 (DOCX 17 kb)

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Copyright information

© Springer-Verlag Berlin Heidelberg 2017

Authors and Affiliations

  • Cecilia Håkanson
    • 1
    • 2
  • Joakim Öhlén
    • 3
  • Ulrika Kreicbergs
    • 1
    • 4
  • Marylou Cardenas-Turanzas
    • 5
  • Donna M. Wilson
    • 6
  • Martin Loucka
    • 7
  • Sandra Frache
    • 8
  • Lucia Giovannetti
    • 9
  • Wayne Naylor
    • 10
  • YongJoo Rhee
    • 11
  • Miguel Ruiz Ramos
    • 12
  • Joan Teno
    • 13
    • 14
  • Kim Beernaert
    • 15
  • Luc Deliens
    • 13
    • 14
    • 15
  • Dirk Houttekier
    • 15
  • Joachim Cohen
    • 15
  1. 1.Palliative Research Centre, Department of Health Care SciencesErsta Sköndal University CollegeStockholmSweden
  2. 2.Department of Neurobiology, Care Science and SocietyKarolinska InstitutetHuddingeSweden
  3. 3.Institute of Health and Care Sciences, The Sahlgrenska Academy, and Centre for Person-Centred Care (GPCC)University of GothenburgGothenburgSweden
  4. 4.Department of Women’s and Children’s HealthKarolinska InstitutetStockholmSweden
  5. 5.Department of General Internal MedicineThe University of Texas, MD Anderson Cancer CentreHoustonUSA
  6. 6.Faculty of NursingUniversity of AlbertaEdmontonCanada
  7. 7.Center for Palliative CarePragueCzech Republic
  8. 8.Centre of Palliative Care, Teaching HospitalBesanconFrance
  9. 9.Occupational and Environmental Epidemiology Unit, Cancer Prevention and Research Institute-ISPOFlorenceItaly
  10. 10.Gallagher Family HospiceHamiltonNew Zealand
  11. 11.Dongduk Women’s UniversitySeoulSouth Korea
  12. 12.Regional Ministry of Equality, Health and Social Policies in AndalusiaSevilleSpain
  13. 13.Cambia Palliative Care Center of ExcellenceUniversity of Washington Division of Geriatric MedicineSeattleUSA
  14. 14.Department of Medical OncologyGhent University HospitalGhentBelgium
  15. 15.End-of-Life Care Research GroupVrije Universiteit Brussel (VUB) and Ghent UniversityBrusselsBelgium

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