|
|---|
| RECOMMENDED MODEL |
COMPONENTS* |
|
|---|
| Hub-and-spoke [36] |
Cross-sector collaboration: community, health sectors MDTs: genetics, neurology, nephrology, psychology, psychiatry, paediatrics Care coordination: dedicated tuberous sclerosis complex specialist coordinator Psychosocial services: provision of supportive care including genetic counselling Transition services: collaboration between paediatric and adult clinics CMPs: tailored to support management and surveillance of symptoms Education for HCPs: provide a structure to facilitate education of HCPs Education for PLWE & families: individualized education plans SDM: high level of involvement by PLWE and families
|
|
| Integrated care for children and young people [37] |
Cross-sector collaboration: health, education, social care, voluntary sectors MDTs: nursing, primary care, paediatrics, neurology, allied health, mental health CMPs: individualised and developed by MDTs Education for HCPs: education and training courses for providers SDM: working in partnership with children, young people, and families Shared EMRs: co-produced formal tools to enhance communication; key feature is a national epilepsy registry with up-to-date data to inform care Digital health tools: utilised by specialists to maximize diagnostic accuracy
|
|
| Chronic disease management [38] |
Cross-sector collaboration: health, social care sectors MDTs: primary care HCPs, ENs, epilepsy specialists CPGs & care pathways: embed CPGs that support clinical decisions ENs: integral part of epilepsy care coordination and education provision Care coordination: EN coordinates and monitors care arrangements Education for HCPs: education support, incentives, and CPGs are particularly important for primary care clinicians Education for PLWE & families: education and self-management are key to managing epilepsy SDM: promotes continuity through shared-care partnerships Shared EMRs: to standardise clinical information and educate staff
|
|
| Paediatric acute seizure care pathway [39] |
Cross sector collaboration: health, community, education sectors MDTs: emergency department staff, hospital physician, neurologist, epileptologist CPGs & care pathways: identifying where CPGs are not integrated into practice and providing recommendations Care coordination: nurse navigator or designated care coordinator Psychosocial services: psychosocial counselling for carers CMPs: preventative seizure action plan in prehospitalisation settings Education for HCPs: on seizure action plans and rescue medication Education for PLWE & families: seizure action plans facilitate education on seizure management Shared EMRs: for sharing seizure and medication data and supporting monitoring and coordination of care for PLWE Digital health tools: advanced seizure detection technology (e.g., electroencephalogram)
|
|
| Model of transition (paediatric to adult) [40] |
MTDs: single combined clinic for child and adult services from paediatrics, neurology, psychology and ENs CPGs & care pathways: guideline analysis to inform transition services Psychosocial services: focused on psychosocial and communication needs of young people Transition services: knowledge exchange and information needs during transition from children’s to adult services Education for PLWE & families: age- and language-appropriate written information on safety and seizure management SDM: to understand communication needs of PLWE and families
|
|
