The online version of this article (doi: 10.1186/s12887-017-0970-1) contains supplementary material, which is available to authorized users.
Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care, particularly from countries without paediatric palliative care, which constitute the majority worldwide.
This is an epidemiological study analysing death certificate data of decedents aged between 0 and 17 years in Portugal, a developed Western European country without recognised provision of paediatric palliative care, from 1987 to 2011. We analysed death certificate data on cause and place of death; the main outcome measure was home death. Complex chronic conditions included cancer, cardiovascular, neuromuscular, congenital/genetic, respiratory, metabolic, gastro-intestinal, renal, and haematology/immunodeficiency conditions. Multivariate analysis determined factors associated with home death in these conditions.
Annual deaths decreased from 3268 to 572. Of 38,870 deaths, 10,571 were caused by complex chronic conditions, their overall proportion increasing from 23.7% to 33.4% (22.4% to 45.4% above age 1-year). For these children, median age of death increased from 0.5 to 4.32-years; 19.4% of deaths occurred at home, declining from 35.6% to 11.5%; factors associated with home death were year of death (adjusted odds ratio 0.89, 95% confidence interval 0.89–0.90), age of death (6–10 year-olds 21.46, 16.42–28.04, reference neonates), semester of death (October–March 1.18, 1.05–1.32, reference April–September), and cause of death (neuromuscular diseases 1.59, 1.37–1.84, reference cancer), with wide regional variation.
This first trend analysis of paediatric deaths in Portugal (an European country without paediatric palliative care) shows that palliative care needs are increasing. Children are surviving longer and, in contrast with countries where paediatric palliative care is thriving, there is a long-term trend of dying in hospital instead of at home. Age, diagnosis, season and region are associated with home death, and should be considered when planning services to support families choosing this option. Priorities should address needs of the youngest children, those with cancer, neuromuscular and cardiovascular conditions, as well as inequities related to place of residence.
Additional file 2: Figure S1. Trend for place of death of 0–17 year-old decedents in Portugal (1987–2011, N = 38,870). (DOCX 131 kb)
Additional file 3: Table S2. Annual trend for home death in 0–17 year-old decedents from complex chronic conditions in Portugal (1987–2011). (DOCX 65 kb)
Additional file 4: Figure S2. Trend for place of death of 0–17 year-old decedents from CCCs in Portugal (1987–2011, N = 10,571). (DOCX 119 kb)
Additional file 5: Figure S3. Trend for home death in 0–17 year-old decedents from complex chronic conditions in Portugal (1987–2011, N = 10,571) by age groups below and above 1 year. (DOCX 109 kb)
Additional file 6: Figure S4. Trend for home death in 0–17 year-old decedents from cancer and non-cancer CCCs in Portugal (1987–2011, N = 10,571). (DOCX 101 kb)
Additional file 7: Table S3. Bivariate analysis of factors associated with home death for 0–17 years-old decedents from complex chronic conditions in Portugal (1987–2011). (DOCX 73 kb)
Additional file 8: Figure S5. Percentage of deaths occurring at home, by subregion NUTS III, in 0–17 year-old decedents from CCCs in Portugal (1987–2011, N = 10,440). (DOCX 502 kb)
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- Trends in cause and place of death for children in Portugal (a European country with no Paediatric palliative care) during 1987–2011: a population-based study
Ana Forjaz de Lacerda
- BioMed Central
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