title: Place of death of children with complex chronic conditions: cross-national study of 11 countries.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: 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.
authors.forename: Cecilia
authors.identifier: http://orcid.org/0000-0003-3660-6306
authors.initials: C
authors.lastname: Håkanson
authors.affiliation: Institute of Health and Care Sciences, The Sahlgrenska Academy, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.
authors.forename: Joakim
authors.initials: J
authors.lastname: Öhlén
authors.affiliation: 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.
authors.forename: Ulrika
authors.initials: U
authors.lastname: Kreicbergs
authors.affiliation: Department of General Internal Medicine, The University of Texas, MD Anderson Cancer Centre, Houston, TX, USA.
authors.forename: Marylou
authors.initials: M
authors.lastname: Cardenas-Turanzas
authors.affiliation: Faculty of Nursing, University of Alberta, Edmonton, AB, Canada.
authors.forename: Donna M
authors.initials: DM
authors.lastname: Wilson
authors.affiliation: Center for Palliative Care, Michelska, Prague, Czech Republic.
authors.forename: Martin
authors.initials: M
authors.lastname: Loucka
authors.affiliation: Centre of Palliative Care, Teaching Hospital, Besancon, France.
authors.forename: Sandra
authors.initials: S
authors.lastname: Frache
authors.affiliation: Occupational and Environmental Epidemiology Unit, Cancer Prevention and Research Institute-ISPO, Florence, Italy.
authors.forename: Lucia
authors.initials: L
authors.lastname: Giovannetti
authors.affiliation: Gallagher Family Hospice, Hamilton, New Zealand.
authors.forename: Wayne
authors.initials: W
authors.lastname: Naylor
authors.affiliation: Dongduk Women's University, Seoul, South Korea.
authors.forename: YongJoo
authors.initials: Y
authors.lastname: Rhee
authors.affiliation: Regional Ministry of Equality, Health and Social Policies in Andalusia, Seville, Spain.
authors.forename: Miguel Ruiz
authors.initials: MR
authors.lastname: Ramos
authors.affiliation: 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.
authors.forename: Joan
authors.initials: J
authors.lastname: Teno
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
authors.forename: Kim
authors.initials: K
authors.lastname: Beernaert
authors.affiliation: 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.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
authors.forename: Dirk
authors.initials: D
authors.lastname: Houttekier
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
authors.forename: Joachim
authors.initials: J
authors.lastname: Cohen
mesh_terms: D000293:Adolescent; D002170:Canada; D002423:Cause of Death; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease / Q000401:mortality*; D003431:Cross-Cultural Comparison; D003643:Death; D003644:Death Certificates; D005060:Europe; D005260:Female; D017052:Hospital Mortality; D006801:Humans; D007223:Infant; D016015:Logistic Models; D008297:Male; D008800:Mexico; D009520:New Zealand; D016017:Odds Ratio; D056910:Republic of Korea; D012111:Residence Characteristics; D017678:Sex Distribution; D013727:Terminal Care / Q000706:statistics & numerical data*; D019452:Terminally Ill / Q000706:statistics & numerical data*; D014481:United States
keywords: Children; Complex chronic conditions; Cross-national; Paediatric palliative care; Place of death; Population-level