Integrated Care in Epilepsy Management: A Scoping Review of the Models and Components of Health and Social Care Delivery

Samantha Spanos; Karen Hutchinson; Tayhla Ryder; Frances Rapport; Nicholas Goodwin; Yvonne Zurynski

doi:10.5334/ijic.7659

Figures & Tables

Table 1

Inclusion and exclusion criteria for study selection in scoping review.

Inclusion criteria:
Articles reporting on epilepsy as a key focus, although may be applicable to other long-term and complex conditions Articles articulating a definition or description of the concept or principles of integrated care (and related terms like coordinated care) Articles describing a model of care, or components of an integrated approach to improve the organisation and delivery of care in epilepsy, that has been put into practice or is being recommended
Exclusion criteria:
Articles reporting on biomedical or clinical studies, or articles that are meta-analyses Articles published prior to 2010 Editorials, commentaries, letters, conference abstracts Grey literature No full-text available Languages other than English

PRISMA flowchart displaying the process of identification and selection of included articles.

Table 2

Frequency of study characteristics included in scoping review.

STUDY CHARACTERISTICS (N = 36)	n (%)
*Publication year*
2010–2013	6 (17)
2014–2017	5 (14)
2018–2022	25 (69)
*Study location*
Europe	21 (58)
North America	11 (31)
Australia	3 (8)
South America	1 (3)
Article type or study design*
Descriptive	16 (44)
Literature review	8 (22)
Retrospective cohort	7 (19)
Prospective cohort	2 (6)
Narrative review	2 (6)
Synthesis of expert recommendations	1 (3)
Delphi	1 (3)
Case study	1 (3)
Case series	1 (3)
*Implementation or recommendation focus*
Refers to implemented model of care	10 (28)
Refers to implemented components, but not full models, of care	9 (25)
Recommends new model of care that is not implemented	5 (14)
Recommends new components, but not full models, of care, that are not implemented	12 (33)
*Components of integrated care*
Healthcare staff & pathways
Multidisciplinary teams	22 (61)
Cross-sector collaboration	19 (53)
CPGs or care pathways	13 (36)
Epilepsy nurses	7 (19)
Tasks & services
Psychosocial services	19 (53)
Care coordination	13 (36)
Care management plans	11 (31)
Transition services	5 (14)
Surgical evaluation	3 (8)
Education & engagement
Shared decision making	19 (53)
Education for PLWE and families	15 (42)
Education for HCPs	13 (36)
Technology for diagnosis & communication
Shared electronic medical records	12 (33)
Telehealth	8 (22)
Digital health tools	5 (14)

[i] N, total number of articles included in scoping review; n, number of articles included in the frequency analysis; CPGs, clinical practice guidelines; PLWE, people living with epilepsy; HCPs, healthcare professionals.

* Three articles utilised more than one type of study design.

Table 3

Implemented models of integrated care in epilepsy management.

IMPLEMENTED MODEL	COMPONENTS*
National Clinical Programme for Epilepsy [42 46 47 48 49 50]	Cross-sector collaboration: community supports, secondary care, tertiary care MDTs: nursing, primary care, neurology, epileptology, emergency medicine CPGs & care pathways: Integrated care pathway for emergency department seizure management ENs: triage and connect PLWE with services across sectors Care coordination: often performed by nurse or EN CMPs: ENs play a key role in assessing care arrangements Education for HCPs: education on care pathways for new and junior staff Education for PLWE & families: education sessions provided by HCPs SDM: facilitated by EN and through CMPs Telehealth: telephone advice line virtual clinics to enhance communication between HCPs Shared EMRs: shared across epilepsy services to improve care coordination
Epilepsy nurse-led model [42]	Cross-sector collaboration: primary, secondary, tertiary care sectors MDTs: doctors, specialists, nurses, ENs Care coordination: ENs coordinate care across health and social care services Psychological services: ENs provide psychological and wellbeing support CMPs: ENs complete comprehensive treatment assessments Education for PLWE & families: ENs provide person-centred education to promote confidence to self-manage SDM: ENs engage in SDM with PLWE and families to enhance care outcomes Telehealth: ENs operate telephone advice lines to assist with PLWE and family concerns Shared EMRs: utilised by ENs as a guide to structure healthcare information
Integrated care pathway for seizure management in emergency department [46 47]	MDTs: inter-specialty approach; emergency department hospital staff and rapid clinic staff CPGs & care pathways: embedded national guidelines into care pathway Education for HCPs: provided for junior doctors and new staff ENs: EN service for triage and discharge follow-up
Integrated care pathway for homeless PLWE [41]	Cross-sector collaboration: health, community sectors MDTs: community services staff, hospital staff, epilepsy specialist CPGs & care pathways: new care pathway for homeless PLWE CMPs: jointly created treatment plans disseminated across providers Shared EMRs: care plans and outcomes shared on hospital records, national epilepsy patient record, and community records
Urgent epilepsy clinic [43]	MDTs: epilepsy physicians, triage nurses, social worker Psychosocial services: clinic focused on education, counselling, and addressing psychosocial risk factors CMPs: seizure action plans deployed to improve knowledge around home seizure management Education for HCPs: epilepsy education on seizure management Education for PLWE & families: facilitated by seizure action plan development Shared EMRs: used to manage the proper dosing of emergency seizure medications
Neurocare service [44]	Cross-sector collaboration: primary care, hospital, community sectors MDTs: hospital discharge team and community neurological nurses Care coordination: community neurological nurses helped PLWE navigate multiple providers CMPs: community neurological nurse-led individual goal setting and action planning Education for PLWE & families: community neurological nurses provided education about medications, symptom management and lifestyle changes SDM: community neurological nurses worked with PLWE on their self-management planning Telehealth: care delivery modes included telephone, videoconferencing, email, and text messaging
Children and Young People’s Health Partnership Evelina London Model [45]	Cross-sector collaboration: primary care, hospital, community sectors MDTs: children’s nurses, general practitioners, paediatricians, mental health specialists Care coordination: children’s nurses coordinate and deliver care across sectors Psychosocial services: biopsychosocial pre-assessment to inform early intervention care SDM: active family involvement in decision making processes and shared learning Telehealth: nurses communicated with families via telephone, email, and text messaging

[i] *As reported within relevant articles; MDT, multidisciplinary team; PLWE, people living with epilepsy; HCP, healthcare professional; EN, epilepsy nurse; CPGs, clinical practice guidelines; CMPs, care management plans; SDM, shared decision-making; EMR, electronic medical record.

Table 4

Models of integrated care in epilepsy management that were recommended but not implemented.

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

[i] *As reported within relevant articles; HCP, healthcare professional; MDT, multidisciplinary team; PLWE, people living with epilepsy; EN, epilepsy nurse; CPGs, clinical practice guidelines; CMPs, care management plans; SDM, shared decision-making; EMR, electronic medical record.

Table 5

Integrated care components across implemented and recommended models.

	HEALTHCARE STAFF & PATHWAYS				TASKS & SERVICES					EDUCATION & ENGAGEMENT			TECHNOLOGY FOR DIAGNOSIS & COMMUNICATION
	MDT	CROSS SECTOR COLLABORATION	CPG & CARE PATHWAYS	ENS	PSYCHOLOGICALSERVICES	CARE COORDINATION	CMPS	TRANSITION SERVICE	SURGICAL EVALUATION & SUPPORT*	SDM	EDUCATION FOR HCPS	EDUCATION FOR PLWE & FAMILIES	SHARED EMRS	TELEHEALTH	DIGITAL HEALTH TOOLS
IMPLEMENTED
% models including relevant component	100%	71%	43%	29%	43%	57%	71%	0%	0%	57%	43%	57%	57%	57%	0%
National Clinical Programme for Epilepsy [42 46 47 48 49 50]	Y	Y	Y	Y	N	Y	Y	N	N	Y	Y	Y	Y	Y	N
Epilepsy nurse-led model [42]	Y	Y	N	N	Y	Y	Y	N	N	Y	N	Y	Y	Y	N
Integrated care pathway for seizure management in emergency department [46 47]	Y	N	Y	Y	N	N	N	N	N	N	Y	N	N	N	N
Integrated care pathway for homeless PLWE [41]	Y	Y	Y	N	N	N	Y	N	N	N	N	N	Y	N	N
Urgent epilepsy clinic [43]	Y	N	N	N	Y	N	Y	N	N	N	Y	Y	Y	N	N
Neurocare service [44]	Y	Y	N	N	N	Y	Y	N	N	Y	N	Y	N	Y	N
Children and Young People’s Health Partnership Evelina London Model [45]	Y	Y	N	N	Y	Y	N	N	N	Y	N	N	N	Y	N
RECOMMENDED
% models including relevant component	100%	80%	60%	20%	60%	60%	60%	40%	0%	80%	80%	80%	60%	0%	40%
Hub and spoke [36]	Y	Y	N	N	Y	Y	Y	Y	N	Y	Y	Y	N	N	N
Integrated care for children and young people [37]	Y	Y	N	N	N	N	Y	N	N	Y	Y	N	Y	N	Y
Chronic disease management [38]	Y	Y	Y	Y	N	Y	N	N	N	Y	Y	Y	Y	N	N
Paediatric acute seizure care pathway [39]	Y	Y	Y	N	Y	Y	Y	N	N	N	Y	Y	Y	N	Y
Model of transition (paediatric to adult) [40]	Y	N	Y	N	Y	N	N	Y	N	Y	Y	N	N	N

[i] Y = Yes, N = No, MDT = multidisciplinary team, CPG = clinical practice guidelines, ENs = Epilepsy nurses, CMPs = care management plans, SDM = shared decision making, HCPs = healthcare professionals, PLWE = people living with epilepsy, EMRs = electronic medical records.

*Recommended component of integrated care but currently a stand-alone service and not included within a specific model of care.