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

Search strategy and identification of studies

A comprehensive search strategy (see Appendix 1) was developed encompassing commonly used synonyms and terms relating to integrated care (e.g., shared care) [11]. Any models, interventions, and practices with the objective of addressing fragmentation in care delivery were included within the scope of integrated care or person-centred care.

Three literature searches were conducted. The initial search of two databases, PubMed and Web of Science, was conducted from January 2010 to August 2020 to focus on contemporary integrated care perspectives and approaches. The search was updated in May 2022, covering the period August 2020 to May 2022. In addition, to increase comprehensiveness of the review, the search was undertaken in additional databases (Medline and Embase) covering January 2010 to May 2022. To improve the currency of the search, another updated search was conducted of all four databases covering the period May 2022 to November 2022.

Study selection

All database search results (January 2010 to November 2022) were combined and uploaded into Endnote where duplicate records were identified and removed. Titles and abstracts of articles were screened by six reviewers (KH, TR, CP, SS, YZ, FR) to assess compliance with inclusion and exclusion criteria (Table 1). To improve inter-rater reliability, 25% of the abstracts were screened by at least two reviewers. Any disagreements or uncertainties were discussed by the team until consensus was reached. Once consensus was reached based on title and abstract, full-text review and data extraction was carried out by six reviewers (KH, TR, CP, SS, YZ, FR).

Data charting and synthesis

Data were extracted into a purpose-designed Excel spreadsheet and included general study characteristics (e.g., publication year, country, methodology, population), models of integrated care for epilepsy management, whether the models had been implemented or only recommended and not yet implemented, and specific components within each model. Where articles did not specify a model of care, but described components of integrated care in epilepsy, data on these components were extracted. Data in literature reviews (including reviews conducted as part of an empirical study) were extracted as presented in the article; we did not search for any additional information about the models or components that were described in these reviews. Data on integrated care components were organised and synthesised into common categories (or areas) and were quantified and tabulated to analyse the frequency of each component across the reviewed articles and across various models of care. Data on models of care were quantified to determine the frequency of implemented or recommended-only models.

Given that the purpose of this review was to scope the literature on integrated epilepsy care rather than to evaluate the effectiveness of particular interventions, a methodological quality assessment was not conducted [15].

Search results

The study selection process is summarised in the PRISMA-ScR flow chart (Figure 1). A total of 295 articles were identified. Following the removal of duplicate studies (n = 77), a total of 218 articles were screened by title and abstract, and 142 were excluded because they did not meet criteria, leaving 76 articles eligible for full-text review. Forty were subsequently excluded for failing to meet the eligibility criteria, leaving 36 articles included for data extraction and analysis.

Figure 1

Characteristics of included articles

The characteristics of included articles are displayed in Table 2 and the full list of included articles is provided in Appendix 2.

Integrated care components and models

Fifteen interrelated components were identified in the current review to be important for integrated epilepsy management. Components reported on were either in the context of a model of care (n = 15), or as standalone components (n = 21). From the 15 articles that reported on models of care, 12 full models were identified (seven implemented and five recommended but not implemented) (see Tables 3 and 4).

Of the 15 components identified, 12 were included in an implemented model, two were proposed in a recommended model, and one was not included in any model of care but was recommended as a standalone component. Table 5 displays the 15 components, the seven implemented models, and five recommended models, indicating the inclusion status of each component within the models of care.

The 15 components were aligned, across all included articles, with four broad areas: healthcare staff and pathways, tasks and services, education and engagement, and technology for diagnosis and communication. Nine articles referred to one or more integrated care components that had been implemented [16, 17, 18, 19, 20, 21, 22, 23, 24], and 12 articles recommended one or more integrated care components [6, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35].

Characteristics of articles

This scoping review identified 36 articles examining integrated care components or models for epilepsy management. Most of these articles were descriptive studies that explored the challenges and opportunities in current integrated epilepsy care practices [6, 50]. Literature reviews were also common, and most recommended new integrated care components or models [28, 38]. Articles were published across 10 different countries, mostly in the last five years, attesting to the rapidly evolving nature of integrated care [51].

Recommended and implemented models of integrated care

The twelve models of integrated care identified were comprised of various combinations of integrated care components. No single model, implemented or recommended, captured all of the 15 components identified to be important for epilepsy management. Of the implemented models, the National Clinical Programme for Epilepsy [48] was the most comprehensive since it captured 11 of the 15 integrated care components. Of the models that were recommended but not implemented, the paediatric acute seizure care pathway incorporated the most integrated care components, closely followed by the ‘hub and spoke’ and chronic disease management models.

There are clear gaps between the identified components of integrated care and the actual design and implementation of integrated care models. First, although transition services have been recommended, this component has yet to be implemented within any model of care. Specialised transition services are needed to support young people’s empowerment and prevent disengagement from care, and these include sexual and reproductive health counselling and gender-specific information provision [27, 40]. Second, digital health tools have been recommended for inclusion in models of care to support HCPs and PLWE but are yet to be implemented. Suggested approaches for incorporating digital tools into models of care should be leveraged and evaluated [37, 39]. Additionally, approaches taken to implement both transition services and digital health tools into models of care for other diagnostic groups can serve as a blueprint from which to build upon and adapt services to the specific needs of PLWE [36, 40].

Third, surgical evaluation and support is lacking in both implemented and recommended models of integrated care, and has only been recommended as a standalone service, which might be perpetuating the lack of knowledge about epilepsy surgery and low uptake [31]. Processes for identifying and referring people with complex epilepsies for surgical evaluation are key to ensuring that PLWE are aware of their treatment options [6]. Decision tools and CPGs that support HCPs in diagnosis and referral pathways, enabling more timely surgical evaluations and workup, should be incorporated within models of care and piloted for effectiveness [28, 31].

Components of integrated care and barriers and enablers to their implementation

All of the care models identified in this review, both implemented and recommended-only, included MDTs as a component of integrated care, and nine of the 12 models emphasised cross-sector collaboration as a core component. A predominant focus of the literature was identifying optimal MDT arrangements that improve opportunities for shared, holistic and person-centred care through communication within and across sectors [36, 37]. Although ENs were emphasised as central to facilitating person-and-family-centred care [23, 43], they were underutilised in both implemented and recommended models of care. The role scope of ENs both within MDTs and within models of care has not been clearly defined, potentially explaining the under-inclusion of ENs within integrated models of care [52].

A critical service that was included in most implemented and recommended-only models is care coordination for PLWE. Care coordinators, often ENs, social workers, or designated case managers, link PLWE, families, and stakeholders within and across sectors, facilitating shared care goals across the continuum of care, and are thus central to achieving value-based person-centred care. Psychosocial services (delivered by allied health, specialists, and ENs) were also widely incorporated in models, highlighting strong awareness of the mental comorbidities and psychosocial impacts of epilepsy [43]. CMPs were also included in most implemented and recommended-only models as a way to consolidate shared care goals and improve communication of care needs between PLWE, families, and providers [41].

Several barriers to effective interprofessional collaboration and coordination of care services were reported in the literature. HCPs often lack a comprehensive understanding of their respective roles and responsibilities in epilepsy management, worsened by a lack of structure and processes to support cross-sector communication and learning [34, 50]. In addition, a perception of clinical autonomy and territorialism within professions can prevent HCPs from exchanging knowledge, which can limit optimal care for PLWE [6, 50]. A key enabler of cross-boundary collaboration in epilepsy management is the development and use of CPGs and care pathways, which can provide direction to HCPs and assist with standardising and effectively coordinating care [38]. In the current review, a greater number of recommended-only models incorporated CPGs and care pathways, compared to implemented models. Barriers associated with implementing CPGs and care pathways include a lack of education and training for HCPs on care protocols [39], limited motivation for change [38], resource and time constraints [47], and coordination issues when involving carers and nonclinical staff (e.g., school personnel) [39]. Greater efforts to collaboratively develop and effectively implement CPGs is necessary to ensure high-quality, safe, and timely epilepsy care [38].

Information and communications technology can also improve information exchange between HCPs and encourage cross-sector collaboration [42, 48]. Shared EMRs, featured in seven models identified in this review, enabled joint access to medical records to facilitate shared, coordinated, and compliant care, and improved communication between providers [34]. The implementation of shared EMRs can be challenged by the incompatibility of health information systems across services, requiring governance support to maximise their value in shared care for PLWE [42, 48]. Telehealth services such as telephone advice lines can also support collaboration, and could be particularly useful for information exchange between general practitioners and specialist epilepsy services [34]. However, incorporating telehealth into models of care requires significant resources and can increase the demands on HCPs [24, 48], potentially explaining the lack of uptake in telehealth innovations. Relatedly, workplace productivity demands can inhibit person-centred and compassionate care delivery, necessitating a cultural shift in organisational operations and funding for staff to build cultures of capacity [48].

Transforming approaches to workforce development is also key to advancing integrated care. Education for HCPs was included in most recommended-only models of care identified in the current review but in less than half of the implemented models. For complex and chronic conditions like epilepsy, education and training in primary and community care settings should be bolstered to support condition management, prevent ill health, and focus on quality of life and wellbeing [38]. The challenges of cross-disciplinary communication and learning, and of role ambiguity amongst HCPs in integrated epilepsy care points to the need for interdisciplinary education and training in medicine, nursing, allied health professions and social care [34, 51]. In addition to investing in community-based training and recruitment (such as for general practitioners with a special interest in epilepsy and ENs), governments and professional bodies should prioritise training in integrated, team-based care, that focuses on collective goals [14, 29].

A ‘whole system’ approach is needed to improve integrated care, requiring policy changes that commit necessary resources and governance structures and funding models that support collaboration across organisational and sectoral boundaries [39, 48]. The safe interoperability of technology within and across organisations should be a central priority of this approach, to improve equitable access to health information, reduce duplication, and improve efficiency [48, 53]. Removing the financial and regulatory barriers that perpetuate fragmented care practices requires dedicated and consistent collaboration among leaders at all health system levels [54].

Strengths and Limitations

This scoping review is the first to explore the breadth and type of integrated care components that have been implemented and recommended but not yet implemented in epilepsy management. The 15 evidence-informed components identified serve as a blueprint for which to assess the comprehensiveness of models of integrated care that aim to deliver high-quality epilepsy management.

There are several limitations worth noting. First, although our search strategies were designed to comprehensively capture integrated care efforts, it is possible that the interventions reviewed were mostly those shown to be successful, omitting those that were less effective but no less useful in informing approaches to integrating epilepsy care. Furthermore, incorporating key search terms for challenges and enablers may have uncovered greater research on the factors associated with integrated care for under-represented groups, such as Indigenous and culturally and linguistically diverse communities. Relatedly, including articles published only in the English language may have limited information about integrated care efforts in non-English speaking populations.

Second, we aimed to capture the range and type of integrated care components and models that have been recommended-only or implemented, but it is beyond our scope to draw conclusions about the components that are of greatest priority. Examining implementation is important to identifying structural and process barriers and enablers, but a comprehensive systematic review will be required to assess the effectiveness of integrated care interventions on health outcomes. We recommend that future reviews also examine grey literature, which can provide useful insights on broad and emerging topics [55].

Third, we focused on integrated care components and models within their specific context, and there was limited exploration of the factors enabling or impeding implementation across different healthcare systems. A deeper exploration of governance structures and funding models and incentives, as well as the relationships between implementation determinants across contexts, is needed to inform the translatability of components and models, and ultimately, their capacity to scale.

Conclusion

This scoping review provides a comprehensive international overview of literature examining integrated care in epilepsy management. There is widespread ambition to develop integrated person-centred epilepsy care, but implementation is challenging, exacerbated by persistent sectoral siloes, inefficient information exchange between providers and sectors, and unclear care pathways. Transforming approaches to workforce development and the enforcement of new policies to more effectively regulate care environments is required if the benefits of integrated epilepsy care are to be fully realised.