Abstract
BackgroundImproved 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.MethodsMEDLINE, 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.ResultsNineteen 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.ConclusionsEvidence 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.ImpactEvidence 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.
Highlights
Life-limiting conditions (LLCs) include conditions that limit life—i.e. cause premature death, such as Duchenne muscular dystrophy, Batten’s disease and conditions that threaten life—i.e. may cause early death but may be cured, such as cancer or liver failure
There was no evidence for changes in the numbers of intravenous antibiotic courses; there was evidence for both an increase in Emergency Department visits and a reduction in physiotherapy post- versus pre-transition
Comparisons with other chronic conditions and implications for quality of care Beyond LLC, for individuals with chronic conditions, there is evidence of disengagement and decreased outpatient attendance after transition.[15,32,68]. This is true for people with diabetes, where an increase in inpatient admissions is
Summary
Life-limiting conditions (LLCs) include conditions that limit life—i.e. cause premature death, such as Duchenne muscular dystrophy, Batten’s disease and conditions that threaten life—i.e. may cause early death but may be cured, such as cancer or liver failure. Children with LLCs often receive specialist paediatric care before transitioning to adult services, typically from age 16 to 19 years in the United Kingdom[6] and planned to be around age 18 years in the United States.[7]. Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services. 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. CONCLUSIONS: Evidence for changes in healthcare use post- versus pre-transition is mixed and conflicting, 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
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