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

Abstract

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.

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

“…There is evidence that emergency healthcare use increases when young people with life-limiting conditions in England transition to adult care 48 and wider evidence for an increase in A&E visits 49 . As the population undergoing transition increases in size, this will increase pressures on healthcare systems and mean that a larger group is impacted by any negative experiences of emergency care.…”

Essential components of an effective transition from paediatric to adult neurologist care for adolescents with Duchenne muscular dystrophy; a consensus derived using the Delphi methodology in Eastern Europe, Greece and Israel

“…There are concerns that a suboptimal transition may lead to a reduction in care quality and increases in emergency care. A systematic review assessed the impact on care after transition of paediatric patients with life-limiting conditions, such as DMD [14]. This review highlighted the possible numerous risks to care when a suboptimal transition occurs.…”

“…Other consequences of suboptimal transition can include increases in inpatient admissions, inpatient bed days, emergency department visits and the requirement for supportive pharmaceutical support. As a consequence, quality of life might be negatively impacted and costs for providing care can increase signi cantly [14].…”

Improving Equitable Transition to Adult Care for Transgender and Gender Expansive Adolescents and Young Adults

“…TGE adolescents and young adults already experience a high burden of health disparities, including decreased use of primary care services and increased rates of HIV and suicidal ideation/attempts compared to cisgender adolescents and young adults [7], due to transphobia and cisnormativity that TGE people experience every day [8]. Improving ToC, with an emphasis on respectful and inclusive care of TGE people, may mitigate the burden of health disparities, decrease the utilization of the emergency department as a source of primary care [9], and help prevent lapses of preventative care [10].…”