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

Håkanson, Cecilia
Author Håkanson, Cecilia ORCID Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal University College, P.O. Box 11189, SE-10061, Stockholm, Sweden. cecilia.hakanson@esh.se Department of Neurobiology, Care Science and Society, Karolinska Institutet, Huddinge, Sweden. cecilia.hakanson@esh.se
Öhlén, Joakim
Author Öhlén, Joakim Institute of Health and Care Sciences, The Sahlgrenska Academy, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden
Kreicbergs, Ulrika
Author Kreicbergs, Ulrika Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal University College, P.O. Box 11189, SE-10061, Stockholm, Sweden Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden
Cardenas-Turanzas, Marylou
Author Cardenas-Turanzas, Marylou Department of General Internal Medicine, The University of Texas, MD Anderson Cancer Centre, Houston, TX, USA
Wilson, Donna M
Author Wilson, Donna M Faculty of Nursing, University of Alberta, Edmonton, AB, Canada
Loucka, Martin
Author Loucka, Martin Center for Palliative Care, Michelska, Prague, Czech Republic
Frache, Sandra
Author Frache, Sandra Centre of Palliative Care, Teaching Hospital, Besancon, France
Giovannetti, Lucia
Author Giovannetti, Lucia Occupational and Environmental Epidemiology Unit, Cancer Prevention and Research Institute-ISPO, Florence, Italy
Naylor, Wayne
Author Naylor, Wayne Gallagher Family Hospice, Hamilton, New Zealand
Rhee, YongJoo
Author Rhee, YongJoo Dongduk Women's University, Seoul, South Korea
Ramos, Miguel Ruiz
Author Ramos, Miguel Ruiz Regional Ministry of Equality, Health and Social Policies in Andalusia, Seville, Spain
Teno, Joan
Author Teno, Joan Cambia Palliative Care Center of Excellence, University of Washington Division of Geriatric Medicine, Seattle, Washington D. C., USA Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium
Beernaert, Kim
Author Beernaert, Kim End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium
Deliens, Luc
Author Deliens, Luc Cambia Palliative Care Center of Excellence, University of Washington Division of Geriatric Medicine, Seattle, Washington D. C., USA Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium
Houttekier, Dirk
Author Houttekier, Dirk End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium
Cohen, Joachim
Author Cohen, Joachim End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

European journal of pediatrics. 2017 Mar ; 176 (3) : 327-335. [epub] 20170109

Eur J Pediatr
ISSN 1432-1076 | 0340-6199
Source

Language English Country Germany Media print-electronic

Document type Journal Article

Persistent link https://www.medvik.cz/link/pmid28070671

PubMed 28070671
DOI 10.1007/s00431-016-2837-0
PII: 10.1007/s00431-016-2837-0
Knihovny.cz E-resources

Keywords
Children, Complex chronic conditions, Cross-national, Paediatric palliative care, Place of death, Population-level,
MeSH
Residence Characteristics * MeSH
Chronic Disease mortality MeSH
Child MeSH
Infant MeSH
Humans MeSH
Logistic Models MeSH
Adolescent MeSH
Hospital Mortality MeSH
Odds Ratio MeSH
Terminal Care statistics & numerical data MeSH
Child, Preschool MeSH
Cause of Death MeSH
Sex Distribution MeSH
Death * MeSH
Cross-Cultural Comparison MeSH
Terminally Ill statistics & numerical data MeSH
Death Certificates MeSH
Check Tag
Child MeSH
Infant MeSH
Humans MeSH
Adolescent MeSH
Male MeSH
Child, Preschool MeSH
Female MeSH
Publication type
Journal Article MeSH
Geographicals
Europe MeSH
Canada MeSH
Republic of Korea MeSH
Mexico MeSH
New Zealand MeSH
United States MeSH

UNLABELLED: 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.

Cambia Palliative Care Center of Excellence University of Washington Division of Geriatric Medicine Seattle Washington D C USA

Center for Palliative Care Michelska Prague Czech Republic

Centre of Palliative Care Teaching Hospital Besancon France

Department of General Internal Medicine The University of Texas MD Anderson Cancer Centre Houston TX USA

Department of Medical Oncology Ghent University Hospital Ghent Belgium

Department of Neurobiology Care Science and Society Karolinska Institutet Huddinge Sweden

Department of Women's and Children's Health Karolinska Institutet Stockholm Sweden

Dongduk Women's University Seoul South Korea

End of Life Care Research Group Vrije Universiteit Brussel and Ghent University Brussels Belgium

Faculty of Nursing University of Alberta Edmonton AB Canada

Gallagher Family Hospice Hamilton New Zealand

Institute of Health and Care Sciences The Sahlgrenska Academy and Centre for Person Centred Care University of Gothenburg Gothenburg Sweden