Join us for our Hot Topics in Research seminar series. Hear from investigators and trainees showcasing hot research topics on and off the Oak Street campus.
Hot Topics in Research is presented by the BC Children's Hospital Research Themes with the support of the Research Education Team.
Infants, Children and Young Adults with a Serious Illness in British Columbia – Describing the Population
Dr. Hal Siden, MD, MHSc
Clinical Professor, University of British Columbia
Investigator, BC Children's Hospital Research Institute
Division Head, Palliative Medicine, BC Children's Hospital
Medical Director, Canuck Place Children's Hospice
Ms. Elisa Castro-Noriega, MPH
Statistician and Health Care Researcher, Canuck Place Children's Hospice
Schedule & Participation
The seminar is scheduled for Tuesday, October 5, 2021 from 11:00 am to 12:00 pm.
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, providing chronic, complex care for children and young people for many years.
We hypothesized that the size of the population of infants, children and young adults (ICYA) living with serious illnesses in British Columbia (BC) is larger than that receiving pediatric palliative care, and we used administrative data from PopData to provide an estimate of the number of ICYA living with serious illnesses in BC. We also described this population in terms of their demographic characteristics, and their prevalence.
Around 3,000 ICYA were diagnosed with a serious illness during an inpatient hospital visit each year (FY 2012/13 – 2017/18); almost half were infants, and more than 50% presented perinatal or congenital diagnoses. The yearly prevalence of ICYA with serious illnesses was above 20 per 10,000, and around 300 per 10,000 in infants.
Using a previously developed and utilized framework, we described this population and their clinical stages, based on objective measures of healthcare use. We defined five clinical stages. On average, 31% of these patients were Stable, 42% were Unstable Group 1, 7% were Unstable Group 2, 16% were Deteriorating and 3% Died.
The current provision of pediatric palliative care in BC falls short of the need for it. Future planning of these services needs to consider to expand its reach. This talk will present the first analysis of children living with serious illness and health complexity in BC who make up a substantial number of children followed at BC Children’s & BC Women’s Hospitals.
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