Transition to adult care for children with life limiting conditions
Research type
Research Study
Full title
Transitioning from paediatric to adult healthcare with a life limiting condition; does this lead to increased healthcare usage, cost and worse patient outcomes?
IRAS ID
282131
Contact name
Stuart Jarvis
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Children and young people with life limiting conditions (conditions that either lead to or threaten premature death) make up a significant part of the paediatric inpatient population in England. The children are cared for by specialist paediatric services, but from 16 years of age they transition to adult services. If there is no appropriate specialist adult service then care is coordinated by a GP. There are concerns about the transition, from adult service providers being less familiar with the young person than the paediatrician who oversaw his or her care for a number of years to GPs being
less familiar with the (in some cases very rare) conditions. There may be lapses in related services, e.g. physiotherapy, which before transition were ongoing but afterwards have to be booked in blocks. There may be increases in emergency hospital care (A&E attendance or emergency inpatient admission) either due to worse management of conditions or due to patients and parents seeking care in the hospital setting rather than consulting with their GP.
The aim of the research is to explore changes in emergency hospital care for young people with life limiting conditions when they transition from child to adult care and the costs associated with them.
The size of any change in emergency hospital care cross the transition will be estimated, using routinely collected healthcare records. Costs of emergency hospital care (to the NHS and
to patients and their families) will be compared before and after transition. This information will be useful to assess the potential for future interventions to be cost effective. Comparisons will be made with individuals with other chronic conditions and those with no known long term conditions to look at best practice and identify any changes in emergency hospital care due to non-healthcare transitions, e.g. starting work or university.REC name
Wales REC 5
REC reference
20/WA/0149
Date of REC Opinion
26 Jun 2020
REC opinion
Further Information Favourable Opinion