Numbers, characteristics, and medical complexity of children with life-limiting conditions reaching age of transition to adult care in England: a repeated cross-sectional study

Abstract

Life-limiting conditions are conditions that shorten or threaten to shorten life. Children with these conditions receive healthcare from specialist children's services. As adults, they get treated in adult services, often overseen by a General Practitioner (GP). The transition often happens between 14 and 19 years. Healthcare providers need information on these young people to provide good services. We don't know much about how many there are, what conditions they have, whether they are male or female, what ethnic group they are in or where they live. We also don't know whether their healthcare needs are becoming more complex. We aimed to discover how many of the children survive into adulthood. We also wanted to know the number of people from different ethnic groups, regions, areas of high or low deprivation and how many were male and female. We looked at how complicated healthcare needs were by counting how many long-term conditions they had and how many different care teams were involved. We also counted admissions to hospital and visits to Accident & Emergency (A&E) Departments and how many needed technology to help with eating or breathing. This was all done using records routinely collected by the NHS. The number of young people with life-limiting conditions surviving to adulthood had increased. There were 20363 in 2012/13 and 34307 in 2018/19. The number from minority ethnic groups had increased, particularly the Mixed and Pakistani groups. The young people had more long-term conditions as time went on. They also had more different medical teams involved in care. They had more visits to A&E Departments. Admissions to hospitals per person had not increased. Healthcare providers need to be aware of these changes. Increasing numbers make it more important to get transition right. Increasing numbers of conditions and medical teams involved make this more difficult.