Title: Service delivery interventions for people with epilepsy and for people with epilepsy and intellectual disability
Funder: Department of Health and Social Care

Abstract: Epilepsy is a common neurological problem that affects up to 3% of the population during their life. It is associated with an increased risk of death, and can be the result of a wide range of brain insults such as stroke, traumatic injury, tumour and brain infections. Epilepsy is also associated with anxiety, depression and intellectual disability and remains a very stigmatising condition. Individuals with intellectual disability and epilepsy often have the most difficult to control seizures._x000D_ _x000D_ Good epilepsy care requires coordination of services across health and social care, and in the health service this includes coordination across primary and community care, hospital (secondary care) and specialist units (tertiary care)._x000D_ _x000D_ Recent evidence from national audits and other sources show that that there are major deficiencies in the coordination and delivery of epilepsy This is causing avoidable morbidity and mortality and inefficient use of NHS and Social care resources._x000D_ _x000D_ A number of ongoing NHS initiatives are now addressing epilepsy care. Improvements will require better commissioning and delivery of care at local and national levels. _x000D_ _x000D_ We plan a suite of reviews that will inform those improvements. We bring together an experienced team with considerable systematic review and methodological experience to support current Cochrane volunteer review teams to complete these reviews._x000D_ _x000D_ We have selected eight reviews to progress based on previous prioritisation work that was funded by our previous NIHR Cochrane programme grant. Due to the substantial update reorganisation that is required, seven reviews will require the publication of a protocol prior to publishing a full review. During the 18 months supported by the grant our target is to publish five full reviews. _x000D_ _x000D_ The planned reviews are:_x000D_ _x000D_ 1. Methods of service delivery for adults with epilepsy. This will include assessments of specialist or dedicated models of care such as community epilepsy clinics including integration with social care, specialist epilepsy clinics, networks and specialist epilepsy nurses._x000D_ 2. Methods of service delivery for children with epilepsy. This will have a similar focus to the adult review._x000D_ 3. Self-management education interventions for adults with epilepsy. This will include educational packages delivered in person, virtually or online_x000D_ 4. Self-management education interventions for children with epilepsy. This will have a similar focus to the adult review._x000D_ 5. Behavioural interventions for adults with epilepsy. This includes interventions aiming to provide psychological support to help individuals better cope with their illness and to reduce stigma._x000D_ 6. Behavioural interventions for children with epilepsy. This will have a similar focus to the adult review._x000D_ 7. Pharmacological interventions for people with epilepsy and intellectual disability. This review will focus on antiepileptic drugs, where it is important to understand effects on behaviour as well as on seizures._x000D_ 8. Psychological and behavioural interventions for adults with epilepsy and intellectual disability. This review will focus on interventions to manage behaviours that might trigger seizures as well as behaviours that have occurred because of seizures._x000D_ _x000D_ The impact of these reviews will be facilitated by our current networks with NHS England Epilepsy pathway programme, the National Neurology Advisory Group, Epilepsy Action and the Neurological Alliance.

Lay abstract: Epilepsy is a common neurological problem affecting around 3% of the population during their lifetime and is associated with significant stigma, morbidity and mortality. It is a complex condition with important co-morbidities including intellectual disability, anxiety and depression and it can occur as a consequence of a wide range of brain insults e.g. stroke, brain injury, tumour, infection. _x000D_ _x000D_ Epilepsy care is also complex spanning primary, secondary, tertiary and social care. Recent evidence from national audits and other sources (NHS Getting it Right First Time, and Public Health England mortality report) show that that there are major deficiencies in the coordination and delivery of epilepsy, and there are major health inequalities._x000D_ A number of ongoing NHS initiatives are triangulating on epilepsy care, which will require major improvements in the delivery and commissioning of care. We plan a suite of reviews that will inform those improvements. We bring together an experienced team with considerable systematic review and methodological experience to support current Cochrane volunteer review teams complete these reviews._x000D_ _x000D_ We have selected eight reviews to progress based on previous prioritisation work (funded by our previous NIHR Cochrane programme grant), seven of which will require the publication of a new protocol. Our target is to publish five of these reviews as full reviews in the 18 months supported by the grant. The planned reviews are:_x000D_ _x000D_ 1. Methods of service delivery for adults with epilepsy. This will include assessments of specialist or dedicated models of care such as community epilepsy clinics including integration with social care, specialist epilepsy clinics, networks and specialist epilepsy nurses._x000D_ 2. Methods of service delivery for children with epilepsy. This will have a similar focus to the adult review._x000D_ 3. Self-management education interventions for adults with epilepsy. This will include educational packages delivered in person, virtually or online_x000D_ 4. Self-management education interventions for children with epilepsy. This will have a similar focus to the adult review._x000D_ 5. Behavioural interventions for adults with epilepsy. This includes interventions aiming to provide psychological support to help individuals better cope with their illness and to reduce stigma._x000D_ 6. Behavioural interventions for children with epilepsy. This will have a similar focus to the adult review._x000D_ 7. Pharmacological interventions for people with epilepsy and intellectual disability. This review will focus on antiepileptic drugs, where it is important to understand effects on behaviour as well as on seizures._x000D_ 8. Psychological and behavioural interventions for adults with epilepsy and intellectual disability. This review will focus on interventions to manage behaviours that might trigger seizures as well as behaviours that have occurred because of seizures._x000D_ _x000D_ These reviews will be updated using the latest Cochrane methods. Impact will be facilitated by our currently being networked with NHS England Epilepsy pathway programme, the National Neurology Advisory Group, Epilepsy Action and the Neurological Alliance.

Research activity codes: 6.1 PHARMACEUTICALS;6.6 PSYCHOLOGICAL AND BEHAVIOURAL;7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;NEUROLOGICAL