Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review

Background Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services. Methods MEDLINE, EMBASE, CINAHL, PsychINFO and Social Science Citation Index were searched. Studies published in English since 1990 including individuals with any life-limiting condition post- and pre-transition and reporting a health or social care use outcome were included. Data were extracted and quality assessed by one reviewer with 30% checked by an independent reviewer. Results Nineteen papers (18 studies) met the inclusion criteria. There was evidence for both increases and decreases (post- versus pre-transition) in outpatient attendance, inpatient admissions, inpatient bed days and health service costs; for increases in Emergency Department visits and for decreases in individuals receiving physiotherapy. Conclusions Evidence for changes in healthcare use post- versus pre-transition is mixed and conflicting, although there is evidence for an increase in Emergency Department visits and a reduction in access to physiotherapy. More high-quality research is needed to better link changes in care to the transition. Impact Evidence for changes in healthcare use associated with transition to adult services is conflicting. Emergency Department visits increase and access to physiotherapy decreases at transition. There are marked differences between care patterns in the United States and Canada.