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

Abstract

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.

Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation

“…The number of children (under 18 years) living with life-limiting conditions (conditions which cannot be cured and will cause premature death) and life-threatening conditions (where curative treatment is possible but may fail) is rising rapidly. 1 Their diagnoses are diverse and often associated with complex health and care needs. 2 3 Over half of all children who die have a pre-existing life-limiting or life-threatening condition.…”

Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review

“…The number of children, adolescents, and young adults with life-limiting conditions is increasing as a result of increased survival and earlier recognition of life-limiting diagnoses. The United Kingdom data suggest that 66.4 per 10,000 individuals in pediatric populations aged from 0 to 19 years were living with life-limiting conditions in 2017, and the prevalence is likely to rise to 84.2 per 10,000 by 2030 (Fraser et al, 2020). However, it was estimated that only 18.6% of them actually received PC before death (Widger et al, 2016).…”

Patient-reported outcome measures in pediatric palliative care—a protocol for a scoping review

“…Worldwide, children with HIV and congenital malformations represent almost half of the population in need of PPC, followed by children with perinatal conditions, such as extreme prematurity and birth trauma [ 6 ]. The latter two also constitute the largest groups in Europe, followed by children with neurologic disease and cancer [ 7 ]. Children in PPC suffer a wide range of symptoms during the course of their disease.…”

“…Children in PPC suffer a wide range of symptoms during the course of their disease. Although most of them have life-limiting conditions, most of these children become young adults, requiring complex care throughout their childhood and onwards [ 7 ].…”