An epilepsy curriculum for primary health care providers: a report from the Education Council of the International League Against Epilepsy

Objective. Primary health care providers are directly responsible for the care of people with epilepsy. However, their education about epilepsy might be inadequate or lacking. Our objective was to develop an evidence-based and consensus-driven educational curriculum for the management of epilepsy within the primary healthcare setting. Methods. The International League Against Epilepsy (ILAE) Education Council commissioned a task force of international experts, who met virtually at monthly intervals in 2020/2021 to develop the curriculum. The task force adopted and added to ﬁ ve domains from the ILAE Epileptology Curriculum after discussions on context, structure and wording of associated competencies and learning objectives. The consensus-approved curriculum was disseminated to the ILAE leadership and constituency in six different languages. An online survey was used to collate structured feedback which further re ﬁ ned the curriculum. Results. Feedback was obtained from 785 voluntary respondents who were inclusive of epilepsy specialists and primary healthcare providers. Nearly two thirds of the respondents approved the use of the curriculum to advance the competency of primary health care providers in epilepsy. The ﬁ nal educational curriculum comprised six domains, 26 competencies and 85 learning objectives. The six domains were: (1) ability to diagnose epilepsy and its broad subtypes; (2) ability to provide counselling to people with epilepsy over a range of issues; (3) ability to introduce treatment and follow-up to people with epilepsy; (4) competency to appropriately refer people to higher centres of care; (5) ability to manage epilepsy emergencies including status epilepticus; and (6) ability to recognize and provide basic care for psychiatric and somatic comorbidities. Conclusions. The curriculum represents an advance in providing inclusive care for epilepsy within the primary health care setting and ideally should be used to facilitate future primary health care epilepsy education packages.

Epilepsy is defined as a tendency of recurrent seizures, has profound social, cognitive and psychological consequences, and affects approximately 50 million people worldwide [1,2].It is the fifth leading cause, and in some regions of the world, the second leading cause of disability-adjusted life years [DALYs] associated with neurological disorders [3].The majority of DALYs are comprised of years lived with disability [4].However, DALYs are also accounted for by premature mortality in people with epilepsy, estimated to be three times more common than in the general population [2,3].A substantial number of deaths and years lived with disability could be averted with cost-effective antiseizure medications prescribed by health care providers with adequate skills, proficiency and knowledge [5,6].In many highincome countries (HICs), epilepsy is diagnosed and managed by epilepsy specialists as part of standard practice [7].This model of care draws support from evidence for better disease outcomes associated with specialist care [8].In most low-and low-middle income countries (L&LMICs), however, there are few or no epilepsy specialists [7,9].In these countries, the diagnosis and treatment of epilepsy often depends on primary health care providers.Further, in many HICs, primary care physicians are the first point of contact for people with seizures and epilepsy.The need for primary health care proficiency in epilepsy in L&LMICs is driven by a dearth of specialists.Some highly successful endeavors, steered jointly by the World Health Organization (WHO) and International League Against Epilepsy (ILAE), in Brazil, China, Myanmar, Senegal and Mozambique have been largely underpinned by engagement of nonspecialists in care of epilepsy [5,6,10].These have relied mainly on task shifting (or sharing) and knowledge transfer and translation.Encouraged by the success of these campaigns, the WHO advocates engagement with primary health care providers in the diagnosis and treatment of people with epilepsy [10].This position is promoted in Resolutions 68.20 and 70.20 of the World Health Assembly endorsed by 194 member countries in 2015 and 2021, respectively [11,12].One of the challenges in scaling-up epilepsy care within primary health care is the lack of resources to equip care providers with appropriate training.Expanding skills and knowledge is further challenged by the high burden and diversity of health conditions in their practice.Any educational enterprise for primary health care workers should follow the principles of adult learning rather than being purely pedagogical and should be clear, concise, relevant and practical [13].Based on these requirements, an ILAE task force formulated an epilepsy educational curriculum, specifically orientated to primary health care providers.We report the current version of the ILAE primary health care epilepsy educational curriculum and discuss ways forward in its implementation.

Methods
The Education Council of the ILAE reported earlier the development of a competency-based educational curriculum for epileptologists which was endorsed and adopted by its constituency [14].Following this, ILAE-supported teaching activities are largely formulated based on competencies and learning objectives in this curriculum.

Primary care task force: constitution and activities
In 2019, the Education Council commissioned a task force with the objective of designing an educational curriculum for seizures and epilepsy in adults and children, specifically for primary health care providers.Task force members were from the six ILAE regions, with representation across HIC and L&LMICs, based on World Bank categories [15].Members had experience in epilepsy education, especially in settings likely to promote opportunities for primary health care provider engagement in epilepsy care.The task force met virtually every month between March 2020 and January 2021.Initially, the members reviewed existing tools for basic level epilepsy education suitable for primary health care providers.Next, a five-step approach was undertaken in designing the competencies and learning objectives of the curriculum [16].These were adapted from the theory of adult learning and consisted of: (a) a needs assessment based on review of the literature; (b) identification of core competencies through expert inputs; (c) assessment of epilepsy-related learning needs of target populations, again based on expert input; (d) establishment of learning objectives; and (e) feedback and refinement [13].

Development of competencies and learning objectives
The previously published ILAE Epileptology Curriculum, with a total of 42 competencies with 124 learning objectives, was organized into seven domains: Diagnosis, Counselling, Pharmacological treatment, Emergencies, Co-morbidities, Epilepsy surgery and Biology of epilepsies [14].The Primary Care Task Force retained the first five domains as they were considered highly relevant to primary care practice and a sixth domain of "Referral" was added by consensus.Each of the competencies and learning objectives were carefully formulated with discussion around semantics, syntax, style and appropriateness, as well as relevance for primary care practice.Elements of the educational curriculum were agreed upon by consensus.

Feedback, refinement and finalization
The first draft of the curriculum was completed by June 2020.This was then circulated to the ILAE Executive Committee and to the six worldwide ILAE regional boards.Feedback was obtained through a structured questionnaire and via open comments and suggestions.This feedback guided further refinement of the curriculum facilitated by discussions among task force members.The revised version was then translated from English by bilingual experienced young epileptologists from the ILAE membership to five languages: Spanish, French, Russian, Arabic and Chinese.A separate set of bilingual experts verified the linguistic comprehensibility and technical appropriateness of translated versions.All language versions of the educational curriculum as well as feedback questionnaires were circulated to the broad membership of the ILAE, including member country representatives, as well as the International Bureau for Epilepsy with an appeal to further dissemination within each country.The survey questionnaire consisted of 26 items asking respondents to rate the degree of importance of each competency on a fivepoint scale that ranged from "extremely important" to "not at all important", in addition to free-text comments.It utilized the SurveyMonkey platform and remained open from March 9 th , 2021 to July 14 th , 2021.The task force reviewed feedback from the survey and incorporated the key changes to create the final version of the educational curriculum [15].

Results
The final version of the primary care curriculum comprised six domains, 26 competencies and 80 learning objectives (table 1).Survey responses (n = 785) were from a broad range of countries ranked according to World Bank income status (L&LMICs: 390 [51%], upper-middle-income countries [UMICs]: 203 [26%], and HICs: 173 [23%]) and vocational status, including 497 (63%) specialists, 105 (13%) primary health care providers, and 183 (24%) others.The in-depth analysis of responses forms a separate study in parallel to this report.The following competencies were rated as "extremely important" by >60% from across all country income groups: definitions of epilepsy, including provoked and unprovoked seizures; ability to counsel women of childbearing age about implications of epilepsy during pregnancy, childbirth and after delivery; and appropriate management of epilepsy-related emergencies including status epilepticus.Competencies that were rated as "extremely important" by 60% or more specialists and primary health care providers included: knowledge about definitions of epilepsy and seizures, and including provoked unprovoked seizures; common causes of seizures in adults and children; ability to counsel women of childbearing age about implications of epilepsy during pregnancy, childbirth and after delivery; appropriate referral to higher levels of care; and appropriate management of epilepsy-related emergencies including status epilepticus (table 2).Conversely, less than 40% of both specialists and primary care providers rated abilities to recognize and manage psychiatric and somatic comorbidities or epilepsy as "extremely important".The majority (456/766 [60%]) of respondents agreed that the curriculum should be used to endorse competency of primary health care providers to care for people with epilepsy, and 594 (78%) supported establishment of an exam leading to certification in one or more competency(ies) in primary health care for epilepsy in their respective countries.Many free-text suggestions in the leadership and community feedback surveys were verified, to be incorporated in the curriculum.Others were added to appropriate sections of the curriculum, for instance, knowledge of and appropriate referral pathways to epilepsy support groups and non-governmental agencies, and community education and awareness (supplementary table 1).Lastly, some suggested elements were deemed by consensus to be beyond the scope of primary care practice, for instance: the interpretation of EEG reports, the use and interpretation of therapeutic antiseizure medication monitoring, competency in managing drug-resistant epilepsy and post-epilepsy surgery, and knowledge about rare adverse events.These were not included in the curriculum.

Review of existing educational resources
The mandate of the task force was to reach a consensus on the core competencies for diagnosis and treatment of epilepsy in primary health care settings and to systematically develop a corresponding educational curriculum.In addition, the task force also deliberated on existing tools for education of primary health care providers in epilepsy.The WHO mental health gap action program (mhGAP) covers epilepsy with six other mental health conditions and is widely used in resource-limited settings [17,18].

ILAE curriculum for primary health care providers
Epileptic Disord, Vol. 24, No. 6, December 2022 • 985 ~ T able 1. Domains, competencies and learning objectives of the ILAE primary health care epilepsy curriculum (six domains, 26 competencies and 85 learning objectives).Suitable platforms should ideally be web-based, easily accessible and inexpensive.These should be endorsed by key stakeholders, inclusive of governments and relevant regional and national professional organizations.Content development and implementation should follow processes relevant to adult learning [13] (figure 1).
Over three quarters of the world's population with epilepsy live in L&LMICs and nearly three quarters of them lack access to treatment [22][23][24].Amongst other reasons, a specialist clinician resource gap is a major factor responsible for the wide epilepsy diagnostic and treatment gap [7].A WHO survey estimated that there are only 0.3 neurologists/100,000 people in the African and Southeast Asian regions in comparison to 9 /100,000 in Europe [9].Whereas nearly all countries reported availability of neurologists in capital cities, access to neurological care was limited in non-capital cities and even more so in rural areas.With the absence or limited number of specialists, the onus of epilepsy diagnosis and care falls on primary health care providers.Hence, capacity building by appropriately training these practitioners is a crucial step in closing epilepsy diagnostic and treatment gaps [10,11].The ILAE task force perceives primary care curriculum development not as one small step in epilepsy education but a giant leap in closing the global epilepsy treatment gap.The present version of the primary care educational curriculum should be re-evaluated and updated in future as experience is gained in its implementation and as needs evolve.This is in keeping with the ILAE's continuing commitment to reduce epilepsy diagnostic and treatment gaps and consequently the global burden of epilepsy.

Limitations and challenges
Feedback was accrued from relatively fewer primary health care providers in comparison to specialists.This was because the ILAE is a specialty organization making it difficult to approach primary health care providers.Likewise, low-income countries were sparsely represented in the survey.However, feedback was obtained from respondents from all lowincome member countries of the ILAE except for Rwanda and Guinea in Africa and Afghanistan, Yemen and Syria from the Eastern Mediterranean region.~ T able 2. ILAE primary health care competencies, which were rated as extremely important by 60% or more of the respondents from among epilepsy specialists and primary health care providers (continued).
The large number of learning objectives might make the curriculum appear daunting to a primary health care clinician who is often burdened with heavy patient loads and has to deal with a range of health conditions.However, the list is complete and entails all that is necessary for optimal care provision.The learning objectives might be construed as reflecting a body of knowledge.It is both inadvisable and unnecessary to assimilate the entire body of knowledge at once.Rather, in keeping with principles of adult learning, care providers may acquire the skills and knowledge piecemeal and on a caseby-case basis.Another challenge might be the diverse cadres of workforce involved in primary care across sociodemographic settings.These include, for example, physicians, nurses, pharmacists and community health workers, all with different roles and responsibilities.In addition, roles and responsibilities of cadres vary from country to country.For instance, in many African countries such as Sudan, Botswana and Mali, the nearest and first-level health care facility is typically run by a nurse practitioner, midwife or a medical assistant and not a doctor [25].They are trained to diagnose and provide basic care for several disorders and refer complicated cases to next-level centers.Further, they are often the first contact in the care pathway for someone presenting with seizures.At the other end of the spectrum are primary care providers working in specialized epilepsy centers, supported by multidisciplinary teams, and requiring a different level of expertise.Covering disparate cadres among the primary care workforce in a unified educational curriculum can be challenging.The task force proposes to work closely with all stakeholders, including those in the primary care workforce to develop necessary educational packages across diverse settings.
To date, the educational curriculum has been translated into six languages to facilitate efforts to disseminate it widely.Eventually, the educational curriculum and content of educational packages will need to be adapted by users in different socioeconomic, cultural and linguistic settings in keeping with their needs.Further, policymakers might well be sensitized to the applicability and integration of the curriculum in future primary health care training programs.&

Key points
An enormous specialist resource gap is one of the major reasons for the wide epilepsy diagnostic and treatment gaps.Improving epilepsy knowledge and skills among primary health care providers is one practical solution to deal with the specialist resource gap.Elucidating a carefully formulated educational curriculum specifically for primary health care The challenge now is to devise and implement educational packages and tools for primary health care providers that draw upon the elements and learning objectives of the curriculum.
Demonstrate working knowledge of what is an epileptic seizure.1.1.2Demonstrateworkingknowledge of what is an acute symptomatic (provoked) and unprovoked seizure.1.1.3Demonstrateworkingknowledge of what is epilepsy.1.1.4Demonstrateworkingknowledge of what is status epilepticus and life-threatening seizure clusters.1.2Demonstrateworkingknowledge of the main causes of acute symptomatic (provoked) seizures in children and adults.1.2.1 Recognize febrile seizures in children and distinguish between simple and complex febrile seizures.1.2.2Recognize the main causes of acute seizures in children and adults (e.g., stroke, trauma, infections, toxins, drugs, metabolic and electrolyte derangements).Understand and address the culturally appropriate aspects and consequences of the diagnosis of epilepsy, including stigma.2.1.1.Provide culturally appropriate examples of the experience of stigma.2.1.2.Recognize and address the impact of epilepsy on quality of life in the appropriate cultural context.2.2 Provide guidance on specific issues related to epilepsy.2.2.1 Provide a guide on social issues, including school integration, work, marriage, legal, and related matters.2.2.2 Provide a guide regarding lifestyle matters, such as driving, sports, alcohol, stress, sleep, recreational drug use, antiseizure medication non-adherence, avoiding burn injuries, falls (from heights), and drowning.2.2.3 Provide a guide regarding first aid during a seizure such as positioning, breathing, timing, avoiding injuries, and crowding.2.2.4 Provide a guide regarding the need for emergency medical care (e.g., prolonged seizures, seizure clusters, lack of recovery, breathing difficulties).2.2.5 Provide a guide to people with epilepsy regarding self-management (e.g., knowing about their disease, understanding disease treatment, laboratory tests, reliable sources of information, and other available resources such as community services, non-governmental organizations, etc.).2.3Communicate information about the causes and consequences of the specific type of epilepsy.2.3.1 Provide guidance regarding culturally-determined misconceptions regarding epilepsy (e.g., spiritual or religious origins and witchcraft, contagiousness, insanity).2.3.2Provideguidance to avoiding harmful practices (e.g., exposure to fire, blood-letting, scarification, exposure to hazardous substances).2.3.3Educatepeople with epilepsy, their families and the public about the causes and frequency of epilepsy.Communicate to patients and carers the diagnosis of non-epileptic events and the need for different treatment.Advise patients about lifestyle issues and need for continued medication when they achieve remission.3.6 Demonstrate the ability to provide initial management of patients with uncontrolled seizures.3.6.1 Know how to manage common causes of breakthrough seizures.3.6.2Recognize when to reassess the diagnosis.Recognize the conditions or elements that constitute an emergency.5.1.2Implementemergency management for prolonged or sequential / clustered seizures.5.1.3Recognizethat altered level of consciousness may be related to seizures and take appropriate action.5.1.4Appropriatelymanage or advise regarding risk of, or actual injuries.5.1.5Appropriatelymanage or advise regarding drug intoxication or adverse reactions.5.1.6Implementinitial management for psychiatric emergencies (e.g., psychosis, self-harm, harm to others, agitation, suicidal ideation, etc.).5.1.7Demonstrateworking knowledge of local guidelines and resources for the management of emergencies.5.2 Demonstrate the ability to manage focal and generalized convulsive status epilepticus in children and adults.Domains, competencies and learning objectives of the ILAE primary health care epilepsy curriculum (six domains, 26 competencies and 85 learning objectives) (continued).Demonstrate the ability to recognize and provide initial management of common somatic multi-morbidities.6.2.1 Recognize somatic multi-morbidities that are important in the management of people with epilepsy (e.g., diabetes, hypertension etc.).6.2.2 Institute appropriate initial management of multi-morbidities in individuals with epilepsy.6.2.3 Institute appropriate management of epilepsy in the presence of multi-morbidities.ILAE primary health care competencies, which were rated as extremely important by 60% or more of the respondents from among epilepsy specialists and primary health care providers.Domains, competencies and learning objectives of the ILAE primary health care epilepsy curriculum (six domains, 26 competencies and 85 learning objectives) (continued).
1.3 Demonstrate working knowledge of the main causes of focal and generalized epilepsies in children and adults.1.3.1 Demonstrate working knowledge of infectious (e.g., parasitic, bacterial, viral), structural (e.g., birth insults, trauma, stroke, tumors), and metabolic (e.g., hypoglycemia) causes of epilepsy.1.3.2Demonstrateworkingknowledge of when to suspect a genetic cause of epilepsy (e.g., absence, myoclonic, generalized tonic clonic seizures).1.4Identifyanddescribethesemiology(clinicalfeatures) of epileptic seizures using standardized ILAE terminology and classification systems.1.4.1 Extract semiology information from patient history.1.4.2Extract semiology information from home-video recordings.1.4.3Recognize clinical features which suggest focal vs. generalized onset.1.4.4Recognize clinical features of motor seizures (e.g., tonic-clonic, myoclonic, tonic, etc.) and non-motor seizures (e.g., absence, focal with impaired awareness, etc.).1.4.5 Recognize clinical features of focal and generalized convulsive status epilepticus.1.5Recognizecommonseizuremimics.1.5.1.Recognize common seizure mimics that do not require active intervention (e.g., night terrors, breath-holding spells, day dreaming, sleep myoclonus).1.5.2Recognize common seizure mimics that may require active intervention but do not require antiseizure medication/s (e.g., psychogenic non-epileptic seizures (PNES), syncope, migraine).1.5.3Recognize clinical features of seizure mimics that pose a high risk and may be treatable (e.g., irregular pulse, cardiac arrhythmias, blood pressure abnormalities, sweating, chest pain).1.6Demonstrateworkingknowledge of relevant aspects of the clinical examination in newly diagnosed seizures and epilepsy.1.6.1 Identify neurological abnormalities (e.g., focal deficits, impaired awareness, abnormal head circumference, etc.).1.6.2Identifysystemicabnormalities(e.g., skin lesions, organomegaly, hypertension, cardiovascular abnormalities, etc.).1.6.3Describe common activating maneuvers to trigger seizures (e.g., hyperventilation, visual stimuli, startle, etc.).1.8Demonstrateworkingknowledge of implications of test results and pathways to care according to the regional setting.1.8.2 Recognize when brain imaging results will support management decisions.1.8.3 Recognize when electrocardiogram results will support management decisions.1.8.4 Recognize when EEG results will support management decisions.2.3.4Demonstrateworking knowledge and provide guidance regarding common measures to prevent epilepsy (e.g., latrines, pig farming, fences and handwashing to prevent neurocysticercosis, safety belt or helmet to prevent traumatic brain injury, prenatal care to prevent birth injuries, etc.).2.3.5 Educate people with epilepsy and their families about the disease specifics (e.g.prognosis, risk factors for seizure worsening, risk of death etc.).2.3.6 Educate people with epilepsy and their families on serious consequences of epilepsy (e.g.accidents, injury and death, including sudden unexpected death in epilepsy (SUDEP)) and measures to decrease these risks.2.4 Counsel women with epilepsy of childbearing age about the implications and management of epilepsy.2.4.1 Provide guidance regarding contraception and interaction with antiseizure medications.2.4.2Provide guidance regarding pregnancy, including teratogenicity of the various antiseizure medications (e.g., valproate).2.4.3Provide guidance regarding post-partum activities e.g.breastfeeding and child care.2.5 Demonstrate working knowledge regarding issues related to elderly people with epilepsy (e.g., comorbidities and drug interactions).3.2 Recommend appropriate therapy based on epilepsy presentation.3.2.1 Recommend appropriate therapy according to seizure type.3.2.2Choose the appropriate antiseizure medication and dosage in elderly patients.ILAE curriculum for primary health care providers Epileptic Disord, Vol. 24, No. 6, December 2022 3.6.3Know when revision of antiseizure medication regimen is needed, following the first trial (choice of medication, dosage, adherence, etc.).4.0 Referral 4.1 Demonstrate working knowledge about patient referral management to a higher level of care.4.1.1Recognize when to refer (e.g., failure to control seizures, epilepsy with significant neurological abnormality, psychiatric or somatic comorbidity, genetic counselling, intellectual disability, etc.).4.1.2Know how to access information about referral options within the health care system.4.1.3Know how to triage the referral (e.g., urgency, type of service, level of care) within the available health care system.4.1.4Communicate appropriate referral information to a higher level of care.4.1.5Communicate to the patient and caregivers the rationale for referral and the actions required.5.2.3 Recognize and manage common causes or precipitants of status epilepticus (e.g., non-adherence to medication, intoxication, metabolic and electrolyte disturbances, infection, etc.).6.0 Comorbidities 6.1 Demonstrate the ability to recognize and provide initial management of common psychiatric comorbidities.~ T able 1. ~ T able 2. ~ T able 1.

Primary Health Care Epilepsy Curriculum Knowledge and Skills acquisition cycle
is one of the first steps in improving epilepsy knowledge and skills among them.The Primary Health Care Providers' Epilepsy Educational Curriculum devised by the Primary Care Task Force of the ILAE Education Council is evidence-based and expert consensus-driven.The Curriculum has been endorsed widely by the ILAE leaders and constituency.The Curriculum comprises of six domains and 26 competencies.
& Figure1.Theoretical basis of the learning cycle for primary health care providers.ILAE curriculum for primary health care providersEpileptic Disord, Vol. 24, No. 6, December 2022• 991 providers