How many children in BC would benefit from access to palliative care?
Data access has been granted for a study to document the population of children and young persons in British Columbia with medically complex conditions who are at-risk for dying and who would benefit from access to pediatric palliative care services
In Canada, in 2005 alone, 2,300 children died of ‘life=threatening /life limiting conditions’ (LTC/LLCs). In the face of non-treatable conditions, or when treatment is not successful, pediatric palliative care attempts to improve the quality of life through the prevention and relief of suffering by identifying and treating physical and psychosocial symptoms. Pediatric palliative care encompasses more than the final weeks to days of life, often providing chronic complex care for children and young people.
“Although many of the individual diagnoses are rare, as a group, children and young people with LLCs represent a larger patient population than many other long-term conditions in children,” says project lead, Hal Siden, Clinical Professor in the Department of Pediatrics at the University of British Columbia and Medical Director of Canuck Place Children’s Hospice.
Children and young people with LTC/LLCs have unpredictable disease trajectories, but typically have complex healthcare needs—often with repeated hospital admissions, particularly at end of life. During childhood, care is usually coordinated by tertiary pediatric specialists and community pediatricians, with pediatric palliative care specialists often not involved until later in the disease process. Identifying children and young people who would benefit from specialist input earlier, may be beneficial to both them and health and social care services.
The project will identify the number of children and young people 0-25 years of age living with life-limiting or life-threatening conditions in British Columbia between April 1, 2008 and March 31, 2018 and describe this population in terms of their ages, conditions/diagnoses, and geographical locations.
The study builds on previous work by Dr. Siden describing the activities of North America’s first free-standing pediatric palliative care hospice, Canuck Place Children’s Hospice. The Hospice is funding the research project.
“The results of this study will provide us with an evidence base to support and inform planning for palliative care services in British Columbia,” says Dr. Siden. “We hope that the evidence generated will be a resource to Canuck Place Children’s Hospice who has the responsibility for delivering these services to children and young people with life-limiting or life-threatening conditions in British Columbia and the Yukon Territory. We also expect that using linked administrative data for this question will be of help to researchers and administrators elsewhere in Canada in determining their own needs for services.”
PopData will link five data sets from the BC Ministry of Health, two data sets from the BC Vital Statistics Agency and data from the BC Perinatal Registry for the project.