Estimating the current and future prevalence of life-limiting conditions in children in England

BACKGROUND: Previous studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services. AIM: To estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population. DESIGN: Observational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence. SETTING/PARTICIPANTS: All children aged 0–19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18. RESULTS: Data on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5–27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0–66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7–61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9–27.5)). The prevalence was highest among the most deprived group and in children of Pakistani origin. Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7–66.3) to 84.22 (95%CI 78.66–90.17) per 10,000 by 2030. CONCLUSIONS: The prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children.