Benefits And Challenges for Young Australians with Epilepsy Transitioning Into Adult Healthcare: A scoping review

Abstract

Transitioning from paediatric healthcare into an adult healthcare system is a high-risk time for people with complex epilepsy. This can be a period of significant upheaval as a young person moves away from familiar and safe paediatric environments into unfamiliar adult healthcare. This is compounded by normal adolescent development, the challenges of epilepsy and the lifestyle conditions it demands, including restrictions on driving and levels of independence. Such factors can contribute to suboptimal health engagement which result in increased seizure activity, hospital admissions and reduction in community participation. Effective, well implemented transition programs are key to reducing risks, however little is known about which features of transition pathways define success or best practice. A scoping review was used to examine a broad range of peer-reviewed literature published between 2017 and 2022. This review examined evidence-based literature relating to experiences of people with epilepsy as they transitioned between paediatric and adult healthcare environments. Specifically, exploring practices that offered benefits, recognising barriers, and identifying findings to inform future research and advance transition practices. This review found that key to reducing transition-related health impacts for young people was patient-centred, engaging care that acknowledges their psychosocial and mental health needs specific to their level of development. Evidence suggests that engagement is built through multidisciplinary clinics that facilitate education and self-management. This review found that successful programs can deliver this by focusing on four key areas; relationships and continuity, capacity building, processes, and health services and systems. At a paediatric level this involves timely, age-appropriate preparation that builds skills and knowledge through tailored care-plans. At the transfer phase this means coordinated teams that work together across systems to ensure handover continuity, reduce stressors, and to aid navigation. At the adult level, care-teams that welcome young patients with protocols for continued capacity building are required.