Infants, children, youth and young adults with a serious illness in British Columbia: a population-based analysis using linked administrative data.

Background: Pediatric palliative care aims to improve quality of life among infants, children, youth and young adults with serious illnesses, sometimes over years, but estimates of infants, children, youth and young adults requiring pediatric palliative care have been highly variable and need refinement. We sought to describe this population in British Columbia and identify clinical instability to inform program planning in pediatric palliative care.

Methods: We conducted a population-based analysis using linked administrative health data from 2012/13 to 2016/17. We applied a coding framework validated in the United Kingdom to estimate the number of BC residents aged 0-25 years with serious illnesses and to identify 5 clinical stages. We describe demographics, estimate prevalence and model risk of instability, defined as having urgent hospital admissions, admissions to the intensive care unit or death.

Results: About 2500 infants, children, youth and young adults were admitted to hospital with a serious illness diagnosis each study year, of which around 50% were infants, 60% or so of whom had perinatal or congenital diagnoses. Compared with children aged 1-4 years, infants had the highest risk of instability (odds ratio [OR] 6.59, 95% confidence interval [CI] 5.97-7.29). Compared with oncology patients, infants, children, youth and young adults with neurological (OR 1.43, 95% CI 1.21-1.70) and otherwise specified diagnoses (OR 1.55, 95% CI 1.39-1.73) had a higher risk of instability.

Interpretation: The population of infants, children, youth and young adults with serious illnesses in BC is substantially larger than that currently receiving pediatric palliative care. Future planning of these services needs to consider expanding its reach, focusing particularly on infants and other subpopulations with high risk of instability.