Transition from paediatric healthcare to adult healthcare for young people with epilepsy in the UK: A scoping review

Abstract

Purpose

The aim was to identify and synthesise published research on transition from paediatric to adult healthcare for Young People with Epilepsy (YPE) in the UK.

Method

We undertook a systematic search of studies published in peer reviewed journals and conference abstracts. We also conducted online searches to identify epilepsy transition resources available from the National Health Service (NHS) and charities. Resources were rated for quality with a bespoke checklist.

Results

We identified 12 peer-reviewed studies, 13 conference abstracts and 2 dissertations. Included were 22 observational studies, 3 interventional studies and 2 studies that combined designs. We also identified 6 quality improvement projects. Lack of continuity of care from paediatric to adult services was a common concern across studies. Five studies explored the impact of transition on parents, noting how they are often anxious about transition and can struggle ‘to let go’. Parents also feel that their knowledge of their child’s condition reduces after transition, whilst there is also reduced knowledge amongst adult healthcare providers, particularly regarding rare epilepsies and specialised treatments. Three studies noted how YPE’s psychological wellbeing deteriorates during the process as support lessens. Two studies, focussing on rare conditions, highlighted that experiences of transition were negative. Only 10/218 (5 %) of NHS providers had specific epilepsy transition resources available. The quality of resources varied, but some examples of good practice were identified. NHS resources focused on logistics of transition and the stakeholders involved in the process, whilst charity resources focused on the interests and skill development of the YPE. Resources neglected SUDEP, peer group support and empowering the YPE in managing their condition.

Conclusion

Lack of continuity in the healthcare system results in poor experiences of the transition process in the UK. Few NHS providers have epilepsy specific resources, and quality of existing materials is inconsistent. More studies are needed to understand the key components of effective transition. Epilepsy transition resources would benefit from co-creation with YPE and caregivers.