Integrated care in epilepsy: A scoping review of the key components of health and social care delivery

Abstract

Introduction: Epilepsy is the most common neurological condition globally, and is associated with significant behavioural, physical, and psychological burden. People living with epilepsy and their families often face extreme difficulty receiving timely and efficient healthcare due to the fragmented nature of epilepsy care delivery and the predominance of hospital-based services. The need to integrate epilepsy care services across healthcare sectors and shift care into community settings has become increasingly clear, but the range and type of integration that has occurred worldwide is unknown. This scoping review aimed to identify recommended and/or implemented models of integrated care for epilepsy, or common elements of integrated care models, to broaden current understanding of the progress toward integrated care in epilepsy.
 Methods: Three literature searches were conducted (in 2020 and 2022) across four databases (PubMed, Medline, Embase, and Web of Science) for integrated, shared, coordinated, or person-centred care models and approaches with a focus on epilepsy. Recommended, developed, or implemented models of integrated care for epilepsy were identified, and data were synthesised into the common elements of integrated care featured in the literature.
 Results: A total of 295 studies were identified across the three searches, from which 35 studies were deemed eligible and were included in this scoping review. Most studies were conducted in the USA or Ireland, and qualitative study designs were most common. Fourteen models of integrated care were identified; eight had been implemented, and six were advocated for implementation. Twelve common elements of integrated care were synthesised, associated with cross-sector collaboration and training, transition and self-management services, and technological advancements to optimise communication between healthcare providers.
 Discussion: There is a growing evidence base supporting the need for an integrated, holistic, and person- and family-centred approach to epilepsy care delivery. Substantial progression has been made design and develop integrated care services for epilepsy, but significant challenges are associated with implementing these services. Lack of readiness for change can stifle efforts toward shifting epilepsy care from hospital to community settings, and governance structures across sectors can prevent continuity and coordination of care. Clearer guidelines for epilepsy care and educational interventions in community settings are needed, as well as greater resources to balance workload targets with tailored, patient-centred care.