Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study
| Autor: | Harold Siden, Claude Cyr, Stephen Liben, Adam Rapoport, Christina Vadeboncoeur, Amrita Sarpal, Kimberley Widger, Marli Robertson, Dawn Davies, Lysanne Daoust, Simone Stenekes, Heather Hodgson-Viden, Julie Laflamme, Marie-Claude Grégoire |
|---|---|
| Rok vydání: | 2016 |
| Předmět: |
medicine.medical_specialty
business.industry Medical record Research MEDLINE General Medicine Confidence interval 03 medical and health sciences 0302 clinical medicine Snowball sampling Quality of life (healthcare) Multidisciplinary approach 030225 pediatrics 030220 oncology & carcinogenesis Family medicine medicine Descriptive research business Inclusion (education) |
| Zdroj: | CMAJ open. 4(4) |
| ISSN: | 2291-0026 |
| Popis: | Background Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. Methods A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs. Results All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days. Interpretation Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|