In seeking treatment for epilepsy and its comorbidities, patients and families interact with primary care, emergency, and specialist physicians, as well as a range of other health professionals. Beyond the technical aspects of care, high-quality care for people with epilepsy requires health professionals who are willing and able to co-manage patients across specialties (e.g., primary care, neurology, psychiatry, obstetrics/gynecology) and to coordinate care across disciplines (e.g., medicine, nursing, psychology, nutrition, rehabilitation, pharmacy). Teams should comprise professionals assembled and prepared to meet the diverse needs of individual patients. Research has identified gaps in health professionals’ knowledge about treating epilepsy and its comorbidities and in their level of confidence in doing so. At the same time, few educational interventions have been developed to improve health professionals’ knowledge about the epilepsies, and researchers have found that physicians outside of the epilepsy field may be reluctant to take advantage of epilepsy education programs that are available. Negative perceptions of people with epilepsy among health professionals contribute to stigma and can affect quality of care. Epilepsy centers and epilepsy advocacy organizations can—and often do—play a major role in supporting professional education programs. Actions needed to improve the education of health professionals include defining essential knowledge and skills, indentifying specific knowledge gaps and information needs, evaluating the efficacy and reach of current educational opportunities, exploring and developing innovative educational tools and technologies, and disseminating educational materials and tools more broadly.
Building the health care workforce’s knowledge base and skill sets in diagnosing, treating, supporting, and generally working with people with epilepsy is necessary to ensure that patients and families have access to high-quality care. People with epilepsy typically encounter a variety of health professionals, including an array of physicians (e.g., neurologists, epileptologists, psychiatrists, neurosurgeons, primary care physicians), nurses, psychologists and counselors, pharmacists, emergency medical technicians (EMTs) and first responders, electroneurodiagnostic (END) technologists, and direct care workers, who play differing roles in their health care (Appendix D provides examples of these roles and the relevant professional boards and organizations). Health professionals need current knowledge about many aspects of the epilepsies: seizure recognition and diagnosis; prevention and treatment options; associated comorbidities, risks, and safety concerns; necessary social services; psychosocial and quality-of-life factors; and stigma. The specific types and depth of knowledge required vary across professions, depending on the roles, responsibilities, and scope of practice of the professionals and the specific settings in which they work.
In considering how to improve the education of health professionals, the committee conducted a search for literature and available resources. However, at the outset, it must be underscored that few articles are available on the epilepsy-related educational needs of the wide range of health professionals or on effective teaching methods for meeting those needs. Much of the available information is outdated or international and not necessarily applicable to professionals in the United States. For some aspects of education, the strongest information pertains to physicians, although the committee fully recognizes the important role of the nonphysician workforce (e.g., nurses, pharmacists, psychologists and counselors, END technologists, direct care workers) in caring for people with epilepsy. However, very little has been done to assess their specific knowledge gaps and information needs or to develop targeted, effective educational interventions for them. The committee was not asked to conduct an in-depth review and analysis of the various educational opportunities, licensing and certification requirements, or specific curricula and content taught in the diverse range of educational programs for all of the health care disciplines individually. Therefore, this chapter focuses on how education and training could be improved broadly, across all professions involved in caring for people with epilepsy, rather than focusing on specific professions or educational opportunities, except to describe a few illustrative programs and knowledge gaps.
The committee’s vision for the education of health professionals about epilepsy would culminate in a workforce that has been taught and trained in multidisciplinary settings to provide high-quality, coordinated, and patient-
centered care (as described in Chapter 4). It further sees the ideal practice environment as being a team-oriented, learning environment that allows professionals to practice to the fullest extent of their training and skills, consistent with their roles, responsibilities, and scope of practice. Health professionals also need to have opportunities to deepen their understanding and strengthen their array of skills over entire careers, in accord with evolving guidelines, best practices, and research advances. Ideally, the health care workforce would be sufficiently prepared to provide every person experiencing seizures with accurate diagnostic services and patient-centered care that meets the patient’s (and family’s) needs, delivered in a manner that takes into consideration health literacy, cultural, and psychosocial factors.
Physicians in every branch of medicine and mental health workers in every branch of mental health need to recognize the symptoms of epilepsy, and they need to know where to refer and what good treatment looks like.
Through its work the committee identified three areas with documented knowledge gaps in epilepsy care: providing primary care, treating comorbidities, and responding to the specific needs of women. The testimony provided to the committee during its deliberations by people with epilepsy and their families suggests additional gaps in knowledge, including areas related to accurate diagnoses, new treatment options, the risks of sudden unexpected death in epilepsy (SUDEP), and how to sufficiently and sensitively convey those risks. Additionally, Hirsch and colleagues (2011) noted the dearth of research and data related to health professionals’ knowledge about SUDEP and their comfort in discussing SUDEP with patients and their families. Gaps in knowledge across various areas likely exist among neurologists without specialized education in epilepsy and, more broadly, among physicians and other health professionals outside of the neurology field (e.g., emergency medicine, psychiatry). Specific knowledge gaps may also exist with respect to treating a number of subpopulations:
• infants, very young children, and all children with the rarer, more severe epilepsy syndromes;
• people at any age who have complex comorbidities or who have seizure-like events with a psychological basis that may or may not be associated with an epilepsy diagnosis;
• the growing number of older adults whose clinical picture is complicated by chronic physical and mental conditions associated with aging and who may already have a complicated drug regimen;
• people who have low health literacy and who may have difficulty following clinicians’ instructions; and
• people who can be identified as at higher risk of premature death from suicide, injury, or SUDEP.
However, detailed exploration of knowledge gaps in these areas and how to remedy them awaits future assessment and documentation.
Each [pediatrician] asked about car seats, home safety, and second-hand smoke, but none noticed [the] seizures or developmental delays until we asked.
I experienced a couple of complex partial seizures for the first time, then a dozen or so complex partial seizures in a single day. Our family doctor was unavailable so I saw one of his associates. He was baffled and prescribed Tylenol, Gatorade, and rest.
A number of medical disciplines make up the nation’s primary care physician workforce, including family physicians, general internists, general pediatricians, obstetrician-gynecologists, and geriatricians. Other primary care providers include physician assistants and nurse practitioners. Many patients with new-onset seizures are first evaluated in primary care settings (Chapter 4). In the United States, high-quality primary care is essential for people with epilepsy, inasmuch as only 17 percent of those with new-onset epilepsy see a neurologist, and primary care physicians provide most of the day-to-day care and treatment for about 40 percent of epilepsy patients (Fountain et al., 2011; Montouris, 2000). Additionally, Begley and colleagues (2009) found that people with epilepsy who were racial/ethnic minorities, had low incomes, or were uninsured or insured through public programs (e.g., Medicaid, Medicare) were less likely to receive specialty care and more likely to receive care through generalists (Chapter 4). This finding further emphasizes the importance of high-quality epilepsy care in primary care settings and the importance of these providers having sufficient knowledge about diagnosing, treating, and referring patients with epilepsy to specialty care when needed.
Primary care providers’ knowledge, skill, and comfort regarding diagnosing and treating the epilepsies have been questioned (by themselves and others) and sometimes criticized (Chappell and Smithson, 1999; Elliott and Shneker, 2008; Gomes, 2000; Hayes et al., 2007; Minshall and Smith, 2012; Montouris, 2000; Moore et al., 2000; Sweetnam, 2011; Thapar et al., 1998; Theodore et al., 2006). It is believed that primary care physi-
cians gain the majority of their knowledge pertaining to epilepsy during medical school through a combination of didactic coursework and clinical experiences, such as neurology clerkships. One study concluded that medical students and residents had low confidence and difficulty when caring for patients with neurological conditions generally, which resulted, in part, from limited exposure to neuroscience subject matter and neurological patients throughout their education. The authors expressed concern about these findings, noting that the number of patients with neurological conditions being cared for in primary care settings is increasing (Zinchuk et al., 2010). Education about epilepsy and other neurological conditions in medical school curricula is disjointed, and not all medical schools require students to participate in a neurology clerkship (discussed below) (Devinsky et al., 1993; Galetta et al., 2006). Moore and colleagues (2000) hypothesized that the development of new seizure medications and a lack of knowledge in prescribing them likely contribute to clinicians’ lack of confidence in caring for people with epilepsy.
An international literature review revealed the need for “earlier targeted education to improve [primary care physicians’] attitudes toward and beliefs about epilepsy and confidence in managing epilepsy” (Elliott and Shneker, 2008). Yet it appears that few educational interventions have been specifically developed to improve education and training about the epilepsies. Such programs need to be sensitively designed, taking into account the considerable caseloads, wide range of clinical conditions, increasing responsibilities, and lower reimbursements that primary care providers face.
The American Academy of Neurology’s (AAN’s) Family Practice Curriculum in Neurology is the result of collaborations between neurology and family practice faculty that aims to provide family care physicians with knowledge about common neurological conditions. The curriculum was designed for medical students, residents, and practicing physicians and includes information and case studies on seizures and epilepsy (AAN, 2011). However, the curriculum is provided as an informational resource and may or may not be widely used in developing or updating educational programs. Nor has the impact of this resource on physician education and knowledge been assessed insofar as the committee could determine.
Surveys of UK general practitioners have concluded that the epilepsy-related topics about which they are most interested in learning are medication therapies and side effects, diagnosis and referral, how to give advice about lifestyle, and non-medication therapies (Chappell and Smithson, 1999; Stuart and Muir, 2008). Practitioners preferred courses that were up to a day in length and that were offered during the week. Additionally, they wanted the information on epilepsy to be combined with information on other neurological conditions. Younger practitioners preferred online
courses and case studies as teaching mechanisms (Chappell and Smithson, 1999; Stuart and Muir, 2008).
A handful of educational programs have been developed and used in different countries to improve the knowledge of primary care providers and general practitioners about epilepsy (Adamolekun et al., 1999; Fernandes et al., 2007; Isler et al., 2008; Minshall and Smith, 2012; Stuart and Muir, 2008):
• Stuart and Muir (2008) developed a half-day course specifically tailored to the needs and preferences of UK general practitioners and nurses. The course used case studies and multidisciplinary lectures to deliver information on medication therapy and side effects, the specific needs of women with epilepsy, and ways to respond to prolonged seizures or status epilepticus. Although participants expressed satisfaction with the course, the developers conducted no assessment of improved knowledge or changes in practice.
• In another UK study, the authors concluded that to be most effective in promoting practice changes among general practitioners, practice guidelines should be paired with targeted educational interventions (Minshall and Smith, 2012; Minshall et al., 2011).
• A Brazilian study found success in three types of educational programs: an 8-hour information course for physicians stressing diagnosis, treatment, and related basic content; a 3-hour “social reintegration” course on the biopsychosocial aspects of epilepsy, designed to equip practitioners and community leaders to provide social support; and a 20-hour “train-the-trainer” course to prepare physicians to pass information on to other health care personnel. These authors highlighted the need for ongoing education to improve quality and management of care (Fernandes et al., 2007).
• Isler and colleagues (2008) used a modular education program that included videos and was delivered via CD-ROM. The program significantly improved seizure recognition and classification skills among pediatric residents, nurses, and electroencephalography (EEG) technologists working in general pediatric clinics in Turkey.
• A program developed in Zimbabwe taught rural primary care nurses and community health educators about epilepsy with a focus on diagnosing and managing people with generalized tonic-clonic seizures. The program included a 1-day seminar with lectures, case studies, and video presentations, and authors documented a significant increase in the knowledge of the nurses, increased patient recruitment to the health center (74 percent), and improved medication adherence (Adamolekun et al., 1999).
As noted in Chapter 4, high-quality primary care services for people with epilepsy can lead to improved seizure control and reductions in emergency hospitalizations (Shohet et al., 2007). Targeted educational interventions can be used to increase knowledge and change practices among primary care providers, which in turn would improve quality of care. Although educational programs and courses need to be tailored to meet the needs, preferences, and time constraints of primary care providers (Chappell and Smithson, 1999), all primary care providers, including nurse practitioners and physician assistants who are playing an increasingly important role in primary care (Bielaszka-DuVernay, 2011; IOM, 2011), need current knowledge about the epilepsies.
Special consideration also should be given to epilepsy education for primary care providers who focus on children, older adults, and women’s health because these groups have specific, and often complex, epilepsy-related needs, as described throughout this report. Part of this training should enable primary care providers to recognize when referrals to specialist physicians or specialized assistance are necessary (Montouris, 2000).
Care for Comorbidities
The epilepsies are associated with a range of physical and mental health comorbidities and cognitive impairments that can have an impact on many aspects of quality of life from family and social relationships and interactions to academic performance and independent living. Research has connected epilepsy with a variety of physical conditions (somatic comorbidities), such as diabetes and cardiovascular disease (Chapter 3). Often these comorbidities, especially mental health conditions and cognitive impairment, go undiagnosed and untreated or undertreated, despite patients’ symptoms (Barry, 2003; Devinsky, 2003; Marchetti et al., 2004; Ott et al., 2003; Wiegartz et al., 1999). Mental health services are a critical component of comprehensive and effective epilepsy care for many people. A range of health professionals—including psychiatrists, neurologists, primary care physicians, psychologists and counselors, psychiatric nurses, and clinical social workers—can provide the necessary services. However, knowledge about these comorbidities—even among epileptologists and neurologists— appears to be lacking, and knowledge about epilepsy among mental health professionals is also inadequate.
Few studies have examined health professionals’ knowledge about comorbidities of epilepsy and their specific educational needs. However, common concerns voiced among neurologists and epileptologists caring for both children and adults with epilepsy are that they are not confident in assessing and diagnosing common comorbid mental health conditions and that few mental health specialists are available and both willing and well
prepared to treat individuals with epilepsy (Hayes et al., 2007; Smith et al., 2007; Sweetnam, 2011). Participants in focus groups conducted at the 2010 American Epilepsy Society (AES) annual meeting identified management of psychological and social comorbidities as a “critical professional practice gap” and noted that “they weren’t trained to treat comorbidities and are uncomfortable doing so” (Sweetnam, 2011, p. 5). At the same time, participants were reluctant to refer patients to psychiatrists and psychologists because of their perceived lack of knowledge about epilepsy.
A study conducted in Brazil, where many psychiatrists reported caring for people with epilepsy,1 found a significant lack of knowledge about epilepsy and its comorbid conditions (Marchetti et al., 2004). Of particular concern was the fact that less than half of psychiatrists knew that depression is the most common comorbid mental health condition associated with epilepsy, which leads to questions about whether depression is being recognized and appropriately treated. While this study may not be directly transferable to U.S. health professionals, it does demonstrate that regular interaction with epilepsy patients is not enough to establish awareness about the complexities of their condition, and specific educational interventions are necessary.
In an effort to improve knowledge of mental health and cognitive comorbidities associated with epilepsy, Smith and colleagues (2007) demonstrated the efficacy of a 50-minute lecture in improving the knowledge of pediatricians and pediatric neurologists on epilepsy topics, such as the cognitive and mental health comorbidities; effects of epilepsy, seizure medications, and stress on behavior and learning; and suicidality. Despite the effectiveness of this small intervention, pediatricians and pediatric neurologists “made it clear that they did not have time” (p. 405) to pursue such educational opportunities, regardless of delivery mechanism (e.g., lecture, video, papers, manuals). This response reiterates the overall deficit in awareness and knowledge about the importance of mental health and cognitive comorbidities and their impact on patients’ quality of life. Clinicians’ lack of awareness and understanding creates a substantial barrier to obtaining needed mental health services, which, in turn, can increase morbidity and mortality (Barry, 2003).
The committee did not find studies that evaluated the epilepsy-specific knowledge of nonphysician mental health professionals, such as psychologists, counselors, or psychiatric nurses. Apparently, despite the demonstrated educational needs and concerns of health professionals, few efforts have been made to develop corresponding educational programs or resources. Developing creative ways to encourage and incentivize health
1Of those psychiatrists surveyed, 95 percent had worked with people with epilepsy and mental disorders previously and 48 percent frequently work with epilepsy patients with comorbid mental health conditions (Marchetti et al., 2004).
professionals to participate in educational opportunities that focus on comorbidities appears essential.
Caring for Women with Epilepsy
Women with epilepsy have specific needs and concerns that health care providers must understand in order to provide high-quality care. For example, hormonal fluctuations can affect seizure frequency, and some seizure medications have adverse effects on reproductive functioning, pregnancy, and breastfeeding. A number of evidence-based practice guidelines and parameters exist that define optimal care for people with epilepsy, and there are a number of guidelines and parameters that are specific to women with epilepsy (see Box 4-2 in Chapter 4). These guidelines are designed to inform health professionals caring for women with epilepsy about evidence-based best practices in the field; they include specific information on a number of topics such as which medications are safe to prescribe during pregnancy, risks associated with seizure frequency during pregnancy, and the use of folic acid supplements during pregnancy (Harden et al., 2009a,b,c). The guidelines present an important opportunity to educate physicians about caring for women with epilepsy. However, little information is available on how often existing guidelines are followed or what role they play in educating health professionals.
A survey was conducted in 1998 by the Epilepsy Foundation to assess the knowledge and awareness of health professionals involved in the care of women with epilepsy following the release of practice guidelines for providing care for women with epilepsy by the AAN and the American College of Obstetricians and Gynecologists. The majority of respondents across all disciplines were not aware of the effects of estrogen and progesterone on seizures or the interactions of seizure medications with oral contraceptives (Morrell et al., 2000). More recent surveys continue to find that physicians, including neurologists and neurology residents and pharmacists, lack critical knowledge about the unique needs of women with epilepsy, particularly the effects of epilepsy and seizure medications on pregnancy, breastfeeding, and sexual dysfunction (Long et al., 2005; McAuley et al., 2009; Roberts et al., 2011).
Roberts and colleagues (2011) concluded that, despite the availability of guidelines from the AAN and AES, knowledge about the use of seizure medications during pregnancy was low—less than half of neurologists were able to identify which medications were linked to adverse events during pregnancy. Additionally, less than a third knew that women with epilepsy do not have a significantly increased risk for pregnancy complications or that epilepsy does not increase the risk of perinatal mortality. The authors concluded that more needs to be done to implement existing guidelines, including educational outreach (Roberts et al., 2011).
These studies and others highlight the persistent knowledge gaps associated with the specific needs of women with epilepsy, and they identify an important opportunity for targeted educational efforts.
Because physicians can by their personal attitudes enhance or diminish stigma of epilepsy in the community and within the family, they are also central to quality of life issues.
Effective epilepsy care requires a productive and positive relationship and effective communication among health care providers and patients and their families. Negative attitudes and beliefs about people with epilepsy that may exist among some health professionals can perpetuate stigma and negatively affect quality of care. Generally, the literature on the attitudes and beliefs of health professionals who care for people with epilepsy is outdated; it comes primarily from Australia, the United Kingdom, and Brazil; and it focuses solely on medical students and physicians. In these studies, health professionals recognize the social stigma associated with the epilepsies (Beran et al., 1981; Davies and Scambler, 1988; Gomes, 2000; Hawley et al., 2007; Hayes et al., 2007), but they may not recognize how their own attitudes and beliefs affect the quality of care they provide and contribute to broader societal stigma and felt stigma for their patients.
International studies of medical students, general practitioners and other physicians have identified negative perceptions of people with epilepsy (who may be characterized as having behavioral and emotional problems, mood swings, or aggressive behavior, for example) and linked these perceptions with stigma (Beran and Read, 1983; Beran et al., 1981; Caixeta et al., 2007; Davies and Scambler, 1988; Frith et al., 1994; Marchetti et al., 2004). Davies and Scambler (1988) emphasized that health care providers can unknowingly promote stigma by avoiding discussion and treatment of patients’ psychosocial challenges and mental health and cognitive comorbidities. Two decades later, Hayes and colleagues (2007) highlighted attitudes of U.S. health professionals as a serious barrier in achieving positive health outcomes for people with epilepsy, especially attitudes associated with caring for patients with multiple needs, working with families that have expectations that may be misaligned or unrealistic, treating patients who do not follow medication regimens as prescribed, responding to cultural variation, and managing patients with negative attitudes, including skepticism and denial. The resulting perception among some health professionals is that people with epilepsy can be difficult to work with (Hayes
et al., 2007). These studies demonstrate the need for targeted efforts to improve the attitudes of health professionals about working with people with epilepsy and their confidence and skills in working with these patients and families.
According to a UK study, attitudes of general practitioners can affect patient-rated quality of care. In this research, patients rated quality of care higher when general practitioners indicated they believed epilepsy is “a primary care responsibility” (Thapar and Roland, 2005, p. 3). A previous study noted that educational initiatives could play a role in building health care providers’ confidence in caring for people with epilepsy and in improving quality of care (Thapar et al., 1998). The results from the few international studies that have examined the impact of educational interventions on improving attitudes of health professionals are mixed (Fernandes et al., 2007; Mason et al., 1990; Noronha et al., 2007). However, it is promising that the more recent studies have observed positive changes in attitude as a result of educational interventions (Fernandes et al., 2007; Noronha et al., 2007).
As mentioned above, some health professionals in the epilepsy field may also be concerned about the nature of the care provided to people with epilepsy by other health professionals, which can negatively affect the interface among primary care, mental health, and neurology professionals (Hayes et al., 2007; Sweetnam, 2011). Hayes and colleagues (2007) indicated that negative attitudes can interfere with professional relationships, which in turn affect referral patterns, effective interdisciplinary collaboration, and patient co-management. The extent of distrust and lack of referrals among health care providers is unknown but could potentially have a significant impact on the quality of epilepsy care. Efforts are needed to foster improved interdisciplinary collaboration and co-management of patients with epilepsy, and those efforts must start during the educational process (see also Chapter 4).
Although it is unknown whether the negative attitudes of health professionals observed in other countries are prevalent in the United States or have persisted over time, some evidence suggests that attitudinal challenges do exist here (e.g., Hayes et al., 2007). As Gomes (2000) pointed out, “Care is influenced not only by knowledge, but by doctors’ attitudes.” Additional research is needed, in order to understand current attitudes and beliefs of U.S. health professionals about epilepsy and the corresponding impact on stigma and quality of care. Educational programs can attempt to foster more positive attitudes and beliefs through building confidence in providing care; providing opportunities to practice strategies for handling challenging situations; and, in general, promoting a patient-centered approach to improve quality of care through professional collaboration and co-management (Chapter 4).
Interactive Online Education
The widespread availability and use of interactive, web-based teaching has had a great impact throughout the educational continuum and can be used in didactic education, clinical training, and continuing education (CE) programs. It offers opportunities to improve and expand the reach of epilepsy educational information and programs, not only for health professionals, but also for individuals with epilepsy and their families (Chapter 7) as well as the public (Chapter 8). Demand for online education2 will likely increase as health professionals become accustomed to using the growing array of new technologies and devices for obtaining educational content.
Studies of online education for health professionals have shown that it is efficient and just as effective as traditional teaching approaches such as lectures (Chumley-Jones et al., 2002; Cook et al., 2008). Online education can be interactive, provides instant feedback, can be flexible in time and location, promotes active learning, and can adapt to the pace and other specific needs of users (Cook et al., 2008; Ochoa and Wludyka, 2008).
Health professionals’ preferences as to the delivery mechanism for educational material on the epilepsies vary. Some professionals and students prefer online education, while others prefer in-person courses or facilitated case discussions (Bye et al., 2009; Chappell and Smithson, 1999; Farrar et al., 2008). A few studies of epilepsy-specific online educational programs demonstrate efficacy and significant improvements in the knowledge of users. Most of these programs were developed and evaluated outside the United States (Bye et al., 2009; Farrar et al., 2008; Isler et al., 2008; Ochoa and Wludyka, 2008; Wehrs et al., 2007). One U.S. study used an interactive, multimedia, online approach with real case studies to supplement didactic lectures for third-year medical students (Ochoa and Wludyka, 2008). The program focused on seizure identification and classification, diagnosis, and management and included photos and videos of people having seizures and links to more detailed information. Because clinicians witness seizures only rarely, the authors emphasized the importance of using video to teach seizure recognition and classification and concluded that their online program, in combination with the standard curriculum, was more effective in short-term learning than the standard curriculum alone (Ochoa and Wludyka, 2008).
Available evidence supports the further development, implementation, and evaluation of interactive, online modules to enhance and augment education about the epilepsies. Targeted online modules could be developed
2Online education is used in this section to describe learning opportunities that are computer based and may be accessed through the Internet.
for different professions or for specific topic areas (e.g., health care for women with epilepsy). The committee supports the use of video to teach seizure recognition and classification whenever possible and emphasizes the importance of the interactive nature of online educational modules, rather than static slide sets or lectures on video. Dissemination and incorporation of these types of modules into curricula and CE will require collaboration among a variety of professional organizations and academic health centers.
In addition to online educational programs, many other online informational resources are available to educate health professionals about epilepsy. For example, peer-reviewed journals (e.g., Epilepsia, Epilepsy and Behavior, Epilepsy Currents) and clinical guidelines specific to epilepsy are available for physicians and nurses through professional organizations such as the AAN and American Association of Neuroscience Nurses (AANN). Additionally, the International League Against Epilepsy (ILAE) is currently developing an e-textbook that will cover a wide range of topics and is expected to be launched in 2012 (Personal communication, C. T. Tan, ILAE, November 21, 2011). Epilepsy organizations, such as the AES, the Epilepsy Foundation, and the Epilepsy Therapy Project (ETP), maintain websites that offer resources targeted to health professionals. As the nation’s foremost provider of epilepsy-related CE and educational resources for health professionals, the AES has a range of resources available on its website3 for its members and health professionals; many of these resources are described in more detail below. Additionally, the ETP’s health professional website4 features videos and webcasts, case studies, and a variety of educational resources on comorbid conditions, the needs of people with specific epilepsy conditions, diagnosis and treatment, refractory seizures, and “challenging cases.” Also, there are informational websites maintained by federal agencies (e.g., National Institutes of Health [NIH],5 Centers for Disease Control and Prevention [CDC]6) and private organizations (e.g., Medscape7) that may also be valuable for informing and educating health professionals about seizures and the epilepsies.
While extensive online resources such as those mentioned above are available, clinicians must seek them out. To date, the effectiveness of these types of resources in educating health professionals and how frequently they are used by those within and outside of the epilepsy field have not been systematically assessed. Existing online educational resources should be evaluated, kept up to date, and tested for reproducibility across different
health professions. Additional online resources, including those available for CE credit, are described below.
One teaching strategy being deployed in many health professional education and training programs is the use of simulation, often involving high-fidelity mannequins.8 Simulation allows students to practice skills in a safe environment where they can make and learn from mistakes without endangering patients. Simulation can provide students with opportunities to practice decision making and prioritization; communication, collaboration, and conflict resolution; and delegation and role clarification (Deering et al., 2011; IOM, 2010b). It also increases exposure to conditions or events that may not happen often enough in a clinical setting to ensure that all students gain experience with them (Weaver, 2011).
The nursing profession, in particular, has embraced simulation as an opportunity to improve education and expand hands-on learning experiences to augment clinical education (IOM, 2010b; Weaver, 2011). To further promote the use of simulation in nursing education, the National League for Nursing has developed the Simulation Innovation Resource Center,9 an online community that provides nursing faculty with resources for designing, implementing, and evaluating education using simulation (IOM, 2011).
Recent literature reviews of the use of simulation in the education of health professionals demonstrate the efficacy and value of this approach to teaching (Cook et al., 2011; McGaghie et al., 2011; Weaver, 2011). Simulation can be used to teach virtually every aspect of clinical encounters and has been used for decades in surgery, emergency resuscitation, and medical examinations, and in a “nearly endless variety of scenarios” (Deering et al., 2011, p. 95). One review of more than 600 studies of the use of simulation in the education of physicians, nurses, EMTs, and other allied health professionals concluded that simulation is “consistently associated with large effects for outcomes of knowledge, skills, and behaviors and moderate effects for patient-related outcomes” (Cook et al., 2011, p. 978).
In its review of the literature, the committee identified few examples of simulation that have been used to teach information on the epilepsies. Konikow (1987) evaluated a program for neuroscience nurses that used computer simulation exercises to deliver case studies on a range of neuroscience topics, including epilepsy and febrile seizures. The authors highlighted
8“High-fidelity” refers to interactive mannequins that are full scale and to other learning experiences (e.g., virtual reality) that “are extremely realistic and provide a high level of interactivity and realism for the learner” (NLN, 2011).
the value of this simulation in teaching diagnostic reasoning skills. Currently, an evaluation of a team-based simulation program that focuses on improving patient safety in epilepsy monitoring units (EMUs) is being conducted by Dworetzky and colleagues (Personal communication, B. Dworetzky, Harvard Medical School, January 3, 2012). The study is testing the use of a procedural checklist for responding to simulated, unexpected events in order to develop critical-thinking, decision-making, and communication skills in teams of residents and nurses; to build the confidence of teams in managing seizures and responding to complications; and to educate them about standard safety procedures and emergency responses in EMUs. This set of knowledge and skills is vital to the safety of patients in EMUs, whose seizure medications are purposefully discontinued to trigger seizures in order to facilitate the diagnosis of seizure type and locus. As a result of the interruption in medication schedules, these patients are at increased risk for unexpected—and serious—events (e.g., falls, injuries, status epilepticus, cardiac arrest, SUDEP) that necessitate immediate and appropriate response from the health care team.
High-fidelity simulation offers a unique opportunity to improve epilepsy education for health professionals, promote interdisciplinary education and collaboration, and ultimately improve quality of care. Simulation’s standardized scenarios can be repeated as necessary and may be particularly useful in teaching seizure recognition and identification, seizure first aid, response to status epilepticus, and connections between epilepsy and its comorbidities. Simulations of seizures and status epilepticus could be especially beneficial for teams of health professionals working in emergency rooms, intensive care units, and EMUs. In many ways, EMUs are a natural fit for the use of simulation for educating health professionals. EMU patients are at higher risk for serious, unexpected events; care is often team-based and requires the participation of a range of health professionals (e.g., epileptologists, nurses, END technologists); and many patient encounters are videotaped as part of standard practice and can easily be reviewed. Simulation of EMU events for health professionals new to this type of setting provides them with an opportunity to practice and learn from scenarios that may be common in EMUs without endangering patients.
There is no formal curriculum in medical school and … there is currently a great diversity of training, which is dependent on the interests of the faculty, the patient mix at the clinical training facility, and the individual resident interests.
A baseline knowledge about the epilepsies is essential for all health professionals, given the large population of people with epilepsy and the challenges of their comorbidities, which may bring them in contact with professionals in multiple disciplines, from cardiology, to mental health, to nutrition, to gerontology and nursing. Very few studies have examined knowledge gaps broadly (studies of specific knowledge gaps are described above). While the epilepsy knowledge base of U.S. physicians—and other health professionals—has not been widely assessed, international studies have demonstrated an overall lack of epilepsy knowledge among physicians and medical students (Beran and Read, 1983; Beran et al., 1981; Caixeta et al., 2007; Elliott and Shneker, 2008; Gomes, 2000; Tiamkao et al., 2007). However, some efforts are being made across the health professional education continuum in the United States to ensure the adequacy and availability of epilepsy-specific education; this section highlights a few of these models and approaches, most of which have focused on the physician workforce.
In an effort to guide medical education in neurology, the AAN has developed core curricula and competencies for neurology clerkship, residency, and fellowship programs, which feature seizures, status epilepticus, and epilepsy as areas to be taught. However, as previously noted, these curricula and competencies are offered as resources, and the extent of their actual implementation is unknown (AAN, 2011). Providing additional guidance for physician education, Morse and Holmes (2011) recently outlined the requisite knowledge and skills for pediatric neurologists treating children with epilepsy.
To fully understand the extent to which epilepsy is represented in medical education and in curricula for other health professions, comprehensive curricula assessments would be required that encompass a range of programs from prelicensure training through CE. Almost two decades after an AES committee found that “education of medical students about epilepsy is often fragmentary and incomplete” (Devinsky et al., 1993, p. S2), epilepsy content in medical school curricula—and other health professions’ training programs—is believed to remain low. Updated studies of curriculum content could provide insight into any advances that have been made and identify important remaining gaps.
For medical students, neurology clerkships are an important opportunity to learn about the epilepsies through clinical experiences and hands-on teaching approaches. However, not all medical students are required to complete a neurology clerkship (Galetta et al., 2006), and the time and content devoted to epilepsy are unknown and can be assumed to be variable, as clerkships must cover information on the full range of neurological conditions from headache and chronic pain to autism spectrum disorders and Alzheimer’s and Parkinson’s diseases. One example of a clerkship that has taken a unique approach to teaching students about epilepsy is a
combined neurology-psychiatry clerkship program at the University of California, San Francisco, School of Medicine. During this clerkship, students develop a patient history, differential diagnosis, and clinical strategy for hypothetical cases presented through an interactive online module, including cases that focus on topics relevant to epilepsy. These exercises bring in both neurological and mental health factors for the students to consider (Hales, 2011), and the advantages include interdisciplinary collaboration and the use of highly informative, rigorously developed case studies that emphasize patient-centered care. The efficacy of these types of modular approaches should be evaluated, and opportunities for expanding the use of them in other clerkship programs and in advanced training of other health professionals—such as advanced practice registered nurses, physician assistants, and emergency medical services (EMS) personnel—could be explored.
Another example of a strategy for educating health professional students about the epilepsies involves the use of “standardized patients,” trained volunteer patients or actors who typically are given a script or specific instructions for a scenario to role-play with a medical student. Standard patients are a staple of medical education and can be especially useful in teaching about disabling conditions (Long-Bellil et al., 2011). The University of South Carolina’s School of Medicine has updated the standard patient scenarios used during its family medicine rotation to include epilepsy as an example and teaches students about high-risk comorbidities for patients with intellectual developmental disabilities (Long-Bellil et al., 2011). Standardized-patient scenarios and simulation specific to epilepsy also could be used to educate advanced practice registered nurses, physician assistants, and other health professionals who are involved in the diagnosis, treatment, and management of epilepsy and its comorbidities. Additional epilepsy-specific medical educational models have been developed and evaluated outside the United States (e.g., Bye et al., 2007; Mason et al., 1990; Noronha et al., 2007). In these studies, content was delivered through lectures and seminars that ranged from intensive 1-day courses to a series of shorter lectures, and they effectively increased students’ knowledge about the epilepsies. These studies highlighted the importance of ongoing and continuous education about the epilepsies, the use of video and expert commentary in educational efforts, and the need for monitoring and evaluation of educational opportunities to determine efficacy and best teaching practices.
Residency and fellowship programs for the range of physician specialties, and clinical rotations and preceptor programs for advanced practice registered nurses and physician assistants, offer additional opportunities for improving epilepsy education. However, program requirements and curricula vary considerably from one discipline, specialty, or program to another, and diverse competing interests typically preclude extensive
focus on epilepsy. The curricula and content for these advanced training programs need to be assessed in order to evaluate the epilepsy-specific content and to identify specific opportunities and strategies for improving these programs.
In literature about the experiences of individual neurology residents, observations have indicated that these programs tend to focus on less prevalent neurological conditions in acute care settings rather than on more common neurological diseases and disorders, including epilepsy, that are predominant in outpatient care (Ances, 2011; D’Esposito, 1995; Moore and Chalk, 2005). Additionally, an informal survey of psychiatry residency program directors demonstrated large variation in the “attention paid to neurology rotations and objectives” (Hales, 2011).10Box 5-1 provides an example of one psychiatry residency program that may provide insight into some best practices for educating psychiatry residents about epilepsy and its associated comorbidities.
An important step toward improving education for physicians interested in specializing in the care of people with epilepsy is a new subspecialty board certification in epilepsy, being created by the American Board of Psychiatry and Neurology (ABPN). A subspecialty board-certification examination for epilepsy will be offered for the first time in 2013 and, for the first few years only (through 2017), will be open to all practicing neurologists. Subsequently, eligibility will be limited to graduates of accredited 1-year fellowships in epilepsy (ABPN, 2012). The core curriculum for the accredited fellowships is being developed by the AAN and includes five subjects: the basic science of epileptology, clinical epileptology, pharmacologic therapy of epilepsy, surgical therapy of epilepsy, and other therapies for epilepsy (AAN, n.d.). Approximately 80 1- to 2-year epilepsy fellowships currently are available in the United States (Theodore et al., 2006). The creation of this subspecialty will promote standardization of fellowships and the content that is taught and also will provide a better understanding of the number of practicing epileptologists in the United States. To assist its members who are interested in taking the certification exam, the AES plans to develop self-assessment and “performance in practice” modules (Personal communication, C. A. Tubby, AES, September 28, 2011).
Although there is not an epilepsy-specific certification for nurses in the United States, the American Board of Neuroscience Nursing (ABNN) offers a certification exam for registered nurses who are interested in specializing in neuroscience nursing. In addition to this certification, educational resources are available through the AANN, including a core curriculum
10Deborah Hales, Director of the Education Division for the American Psychiatric Association, conducted this informal survey to inform the presentation she gave at the committee’s June workshop.
The first 2 years of the 4-year program provide didactic instruction through a weekly clinical neuroscience course, which includes 3 or 4 hours on epilepsy (including classification of seizures, seizure terminology, phenomenology, and recognition of seizure types through video) and 1 hour on electroencephalograph (EEG) interpretation. The neuropsychiatry section of the core curriculum includes a 90-minute session on behavioral concerns relevant to epilepsy that reviews common neuropsychiatric comorbid conditions. A psychopharmacology seminar includes side effects of seizure medications, among other topics. First-year residents also participate in a 3-month rotation in neurology. One of those months is devoted to neuropsychiatry and includes pre- and post-surgical evaluation of people with epilepsy, neuropsychiatric pathology, drug treatment challenges for people with epilepsy, and weekly EEG reading tutorials. The third and fourth years of the residency provide a 90-minute session on epilepsy surgery and a 2-year biological psychiatry seminar, which includes four sessions per year on clinical neuropsychiatric conditions. An elective neuropsychiatry journal club devotes 1 month per year to epilepsy-related papers. Additional opportunities to learn about epilepsy and its comorbidities include an elective longitudinal neuropsychiatric clinic; weekly case discussion among all residents, fellows, and faculty; and case conferences and readings.
SOURCE: Hales, 2011.
for neuroscience nurses that has a chapter on epilepsy and clinical practice guidelines for nurses caring for patients with seizures (AANN, 2009; Bader and Littlejohns, 2010). Like neurology clerkships, residency programs, and the board certification exam for physicians, this exam and core curriculum cover a wide range of neurological conditions and disorders, including epilepsy. Certification offered through the ABNN is not required to practice as an epilepsy nurse, which in the United States is usually a self-designated titled for nurses working in epilepsy centers. It is believed that epilepsy nurses practicing in the United States receive most of their epilepsy-specific education through on-the-job training. Efforts should be made to assess nurses’ knowledge gaps about the epilepsies, to evaluate existing educational programs and opportunities, and to develop educational interventions that meet the specific learning needs of epilepsy nurses and the wide range of nurses (e.g., advanced practice registered nurses, psychiatric nurses) who work with people with epilepsy and their families.
Epileptologists, neurologists, and other health professionals involved in the care of people with epilepsy have benefited from the J. Kiffin Penry Epilepsy Education Programs, developed almost three decades ago. Box 5-2 describes the intensive courses offered through the Penry program, which provide opportunities beyond what may be possible through standard health professions education and training programs.
Since the launch of the first pilot program in 1986, the J. Kiffin Penry Epilepsy Education Programs have provided learning opportunities for more than 4,000 physicians and other health professionals. Approximately 20 percent of all practicing U.S. neurologists have participated in at least one of its five educational programs:
• The Residents Program in Epilepsy is a 3-day course designed for second-year residents in neurology or pediatric neurology. Its goals are to “host at least one resident from each neurology residency program in the country” and to “increase residents’ knowledge and interest in epilepsy and encourage them to pursue epilepsy fellowships.”
• The Pediatric Epilepsy Program is a 3-day course available to child neurology residents, and it covers a diverse spectrum of topics relevant to diagnosing, treating, and managing children and adolescents with epilepsy, with an emphasis on seizures and syndromes with pediatric onset.
• The MiniFellowship Program is targeted to epilepsy fellows and in 4 days covers a comprehensive range of topics that includes diagnosis, treatment, and management of the epilepsies; advances in the field;, quality of life; psychosocial concerns; and needs of specific subpopulations.
• The Advances in Epilepsy Program provides practicing neurologists and other health professionals with a streamlined weekend course that covers the fundamentals of diagnosis, treatment, and management of the epilepsies. Continuing medical education (CME) credit is available for this course.
• The Advances in Epilepsy IDD/LTC Program was designed specifically for physicians who care for individuals with epilepsy who are also intellectually developmentally delayed. This weekend course qualifies for CME credit and focuses on specific diagnosis, treatment, and management considerations for this population, including quality of life and behavioral challenges.
The sessions are conducted in an intensive learning environment, are limited to a small number of participants, and include lectures, peer group discussions, and case studies. Experts across the epilepsy field and faculty from the Comprehensive Epilepsy Center at Wake Forest University teach the sessions. Participation not only provides access to an online alumni center that includes educational and networking resources but also fosters lasting relationships among professionals. During a focus group discussion conducted at the 2010 AES Annual meeting, participants identified the Penry program as a “seminal event that changed [their] professional practice” (Sweetnam, 2011).
SOURCE: J. Kiffin Penry Epilepsy MiniFellow Network, 2011.
CE is critical to a well-educated health care workforce and essential for keeping health professionals’ knowledge and competencies up to date and abreast of advances in research, diagnosis, treatments, technology, and approaches to caring for patients with epilepsy. CE also offers an op-
• American Academy of Neurology
• American Academy of Neuropsychology
• American Association of Neurological Surgeons
• American Association of Neuroscience Nurses
• American Clinical Neurophysiology Society
• American Epilepsy Society
• American Psychiatric Association
• American Society of Electroneurodiagnostic Technologists
• Association of Child Neurology Nurses
• Child Neurology Society
• Congress of Neurological Surgeons
• Epilepsy Foundation
• Foundation for Education and Research in Neurological Emergencies
• International League Against Epilepsy
• International Neuropsychological Society
• National Academy of Neuropsychology
• National Association of School Nurses
• Society of Neurological Surgeons
portunity to broaden the understanding of health professionals regarding comorbidities, psychosocial concerns, quality of life, and needs of specific populations. Box 5-3 provides examples of professional organizations that offer, or have offered, epilepsy-relevant CE.
The requirements and approaches to CE vary significantly across professions and often are guided by requirements developed by professional boards, associations, and state licensing authorities. In 2010, the Institute of Medicine (IOM) released the report Redesigning Continuing Education in the Health Professions that described some of the shortcomings of current CE approaches, noting that “there are major flaws in the way CE is conducted, financed, regulated, and evaluated” (p. 2) and that “the science underpinning CE for health professionals is fragmented and underdeveloped” (p. 2). The report called for additional emphasis on interdisciplinary CE opportunities—which would be particularly valuable for professionals caring for people with epilepsy—and a new, comprehensive vision for professional development (IOM, 2010a).
This section of the chapter provides examples of currently available CE opportunities related to epilepsy that range from annual meetings and lectures to online education and targeted courses. The committee encourages developers of epilepsy-related CE to explore interdisciplinary educational opportunities, use innovative approaches that move beyond lectures at annual meetings, develop teaching approaches that are interactive and
relevant to clinical settings and situations, focus on improving outcomes rather than merely fulfilling credit-hour requirements, and reach health care providers beyond the epilepsy fields (e.g., primary care providers, nurses, psychologists, counselors).
Annual Meetings and Lectures
The annual meetings of professional organizations, such as the AES, ILAE, AAN, AANN, and those listed in Box 5-3, offer numerous lectures and workshops for CE credit that are relevant to epilepsy. The committee did not review these educational opportunities in detail, but notes that they typically are designed to meet the educational needs and preferences of the specific association’s membership. The AES’s annual meeting draws more than 4,000 attendees, who have available to them a range of educational programs (AES, 2011a). The society maintains online archives of all of its symposium programs. However, CE credits for physicians, nurses, and pharmacists are available only for those who attend the meeting in person (Personal communication, C. A. Tubby, AES, September 28, 2011). Participants have highlighted the need for additional educational opportunities at these meetings, explicitly for nurses and surgeons (Sweetnam, 2011).
The ILAE also hosts regional and international meetings (called congresses) for health professionals around the world. The sessions at these meetings range from lectures and poster presentations to interactive workshops and debates. The 2011 International Epilepsy Congress, held in Rome, drew almost 4,000 delegates from 114 countries. Increasingly, congress sessions and teaching courses are uploaded to a website for the benefit of people unable to attend in person. Additionally, the organization is creating short video summaries of selected presentations and using social media to disseminate congress messages and facilitate distance learning. European continuing medical education credits are available for these meetings and workshops, which can be converted to CE credits recognized by the American Medical Association (Personal communication; E. Bertram, F. Quinn, and C. T Tan; ILAE; November 17, 21, and 26, 2011).
According to the IOM (2010a) report on CE, experience suggests that health professionals who attend these meetings for CE credit are likely to focus on fulfilling requirements to maintain their licenses and certification in areas they are familiar with, rather than pursuing topics that would advance their practice. Evidence that these programs effectively improve knowledge and change attendees’ practice patterns is generally lacking (IOM, 2010a). Nevertheless, they offer important opportunities for developing and sustaining professional relationships in the field of epilepsy—a field with relatively small numbers of health professionals (Sweetnam, 2011).
Online Continuing Education Courses
Online education can be an effective and innovative approach to expanding the reach of educational opportunities for health professionals and is increasingly used to fulfill CE requirements. This section describes three examples of epilepsy-specific CE programs offered exclusively online: one is targeted to END technologists (also referred to as EEG technologists), one is targeted to neuropsychologists, and the third to health professionals outside the United States. Those descriptions are followed by brief summaries of programs available both online and in-person for school nurses and for EMS and law enforcement personnel. Online epilepsy education programs should be evaluated for their suitability as models for a range of health professionals, such as other types of nurses, counselors, and direct care workers, and more broadly for others who interact with people with epilepsy, including teachers, day care workers, coaches, and social workers (Chapter 6).
As described above and throughout the report, psychologists, psychiatrists, and other mental health professionals are essential for delivering comprehensive epilepsy care, including diagnosis, treatment, and management of mental health and cognitive comorbidities. In an effort to educate neuropsychologists about the epilepsies, the National Academy of Neuropsychology developed an online program first offered in March 2011 that focuses on the neuropsychological aspects of epilepsy and epilepsy surgery. The program is 8 weeks in duration and provides 16 CE credits for participants. Since its inception, 75 participants have taken the course including practicing neuropsychologists, clinical psychologists, and psychology students (e.g., graduate students, interns, postdoctoral residents). The course is divided into four learning modules that cover the range and classification of epilepsy disorders and syndromes, approaches to diagnosis and treatment, the cognitive and behavioral effects of epilepsy and seizure medications, and the role of the neuropsychologist in providing care for people with epilepsy. The course uses a textbook, a DVD on seizure classification developed by the Epilepsy Foundation, online discussion forums, and quizzes to convey and test knowledge (NAN, 2010, 2011; Personal communication, Gregory Lee, Medical College of Georgia, December 6, 2011).
END technologists play an important role in the diagnosis and care of people with epilepsy, especially in EMUs. The American Society of Electroneurodiagnostic Technologists offers structured online CE courses, including one on EEG and epilepsy that features information on seizure classification, identification of EEG patterns associated with epilepsy, clinical identification of different seizure types and other seizure-like events, case studies, and samples of EEG patterns. Other online courses offer information on seizure first aid and EEG pattern recognition (ASET, 2011). These courses build on content taught through END programs, which include
competencies in long-term monitoring for epilepsy, knowledge of treatment options for epilepsy, and recognition of common seizure patterns on EEGs (ASET, n.d.).
Highlighting the global need for improved education for health care providers about the epilepsies is the Out of the Shadows Campaign, launched in 1997 and developed through a collaboration of the ILAE, the International Bureau for Epilepsy, and the World Health Organization (WHO, 2011). In order to extend educational opportunities for health professionals globally, the ILAE in 2004 developed a distance-learning program called VIREPA (the Virtual Epilepsy Academy).11 A variety of courses are offered each year, including pharmacology and pharmacotherapy, use of the EEG in the diagnosis and management of epilepsy, and neuroimaging. A course on the genetics of epilepsy will be offered in 2012. Courses designed for mental health professionals working in African countries also are being developed (Personal communication, P. Shisler, ILAE, November 16 and 18, 2011).
VIREPA courses are generally targeted to practicing neurologists, last a few months in length, are limited to 30 participants, and are taught and moderated by actively practicing experts from around the world (ILAE, 2011). Each course is designed around learning scenarios that feature virtual discussion forums and require participants to complete specific tasks. Approximately 100 health professionals from 40 to 45 countries participate in VIREPA programs each year, but only a small number (3 of 96 in 2011) are from the United States. CE credits are not provided for participants. In addition to its workshops and VIREPA, the ILAE offers additional educational opportunities and resources12 (Personal communication; E. Bertram, F. Quinn, and C. T. Tan; ILAE; November 17, 21, and 26, 2011).
A small number of targeted CE programs have been developed to improve the knowledge of specific nonphysician health professionals who do not typically fall within the epilepsy field. Two are described below.
School nurses play an important role in the lives of children with epilepsy across the country, but few have received formal education about epilepsy and its management. The Epilepsy Foundation, in collaboration with the National Association of School Nurses (NASN) and with support from the CDC, developed a program to educate school nurses about caring for students with epilepsy. The learning objectives for the program include seizure recognition, treatment options and side effects, first aid, seizure ac-
12For example, the Asian Epilepsy Academy offers a two-part EEG certification exam and the Asian Epilepsy Academy and Latin American Commission offer fellowship opportunities. Additionally, the North American Commission has developed visiting professorships programs in North America, Latin America, and the Caribbean (Personal communication, C. T. Tan, ILAE, November 21, 2011).
tion planning, and teaching school personnel about epilepsy (NASN, 2011). The program is offered in two formats, both of which provide 3.2 CE credits: in-person meetings offered through state and local Epilepsy Foundation affiliates and online modules through the NASN website (NASN, 2011). Between October 2009 and September 2010, more than 6,700 school nurses participated in the in-person meetings and almost 1,500 participated in online training, making the program among the NASN’s most frequently used sources of CE (Personal communication, K. Price, Epilepsy Foundation, June 9, 2011).
EMS personnel and other first responders (e.g., firefighters, law enforcement personnel) are frequently involved in the emergency care and transportation of people with epilepsy. Box 5-4 describes two targeted programs designed to supplement epilepsy-relevant information in existing EMS curricula. The first program was developed by the Epilepsy Foundation under a cooperative agreement with the CDC, and the second was included as part of a clinical trial network funded by the NIH. One of the Epilepsy Foundation’s goals with its educational efforts for EMS and law enforcement personnel is to prevent emergency personnel from using excessive force when confronted with a person having a seizure or someone who is disoriented following a seizure. The Epilepsy Foundation’s legal defense fund has represented individuals who have been injured, in some cases fatally, as a result of interactions with first responders (Epilepsy Foundation, 2011a,b). Because of their vital interactions with epilepsy patients during emergency situations, some of which may be life-threatening, first responders and EMS personnel require accurate, up-to-date knowledge and skills and must be trained to recognize, stabilize, and treat seizures and seizure-related emergencies, such as status epilepticus. Programs such as the one offered through the Epilepsy Foundation are necessary to ensure high-quality, safe emergency services for people with epilepsy.
The AES, ILAE, Epilepsy Foundation, and ETP each play a vital role in educating health professionals, as described previously. This section of the chapter describes some additional educational efforts that have been attempted by the AES, which has the mission to “promote research and education for professionals dedicated to the prevention, treatment, and cure of epilepsy” (AES, 2012a; Personal communication, C. A. Tubby, AES, September 28, 2011).
In addition to educational sessions at its annual meeting, the AES offers numerous educational opportunities throughout the year, including an
As a person who has lived with epilepsy since the age of 3, I am very concerned that many people know what a tonic-clonic seizure is and looks like, as well as the first aid needed, but they have no idea how to recognize or react to someone who has a complex-partial seizure. Police departments and other public workers need to be educated about this type of seizure and other seizures that are not … tonic-clonic.
The Epilepsy Foundation’s program for law enforcement officers focuses on seizure types, seizure recognition, and on-scene care, while the program for emergency medical services (EMS) personnel promotes seizure recognition, prehospital care, and transportation issues. Between December 2009 and September 2010, nearly 4,000 EMS personnel were trained through 16 state and local Epilepsy Foundation affiliates using the EMS personnel training curriculum. The Epilepsy Foundation contracted with Centrelearn to provide an online learning portal and develop online training modules for both the law enforcement and the EMS training curricula. Through this mechanism, an additional 1,200 EMS personnel completed the training online between March and June 2011, and nearly 200 officers completed the law enforcement training online in the first 5 months of 2011 (Epilepsy Foundation, 2011c). Continuing education credits are available through both the classroom-based and online training programs. Additional national partnerships with EMS and law enforcement entities will allow further outreach as well as seizure and epilepsy awareness and education in the coming years (Epilepsy Foundation, 2010).
Seizure-related educational opportunities for first responders also have been available through research projects. For example, the National Institutes of Health developed the NETT (Neurological Emergencies Treatment Trials) Network “to conduct large simple trials to reduce the burden of very acute injuries and illnesses affecting the brain, spinal cord, and peripheral nervous system” (Barsan, 2011), including a randomized control trial (RAMPART [Rapid Anticonvulsant Medications Prior to Arrival Trial]) for status epilepticus in the prehospital care setting. It has involved more than 4,000 advanced emergency medical technicians (EMTs) and EMT paramedic personnel from more than 75 hospitals and dozens of EMS agencies (NETT, n.d.). A training curriculum was developed by the NETT Clinical Coordinating Center that included emphasis on seizure treatment and protocol training, thus providing epilepsy and seizure-related information to large numbers of participating professionals (Barsan, 2011; Cearnal, 2006).
online Epilepsy Education Program, available at no charge but that does not provide CE credit (AES, 2012b). The program contains five sections: neurogenetics of epilepsy, basic mechanisms of epilepsy, clinical epilepsy, neuropharmacology, and neurosurgical aspects of epilepsy (AES, 2011b) and could be useful to medical students, residents, and practicing health professionals alike. However, the program consists of static slide sets that can be downloaded and reviewed by the user and is not interactive. Four
of the five sections offer a self-test on the information covered. The AES continues to develop new slide sets and two new ones will focus on improving nurses’ knowledge about epilepsy. The first set will target nurses who are new to epilepsy and will be available in early 2012. The second set will focus on nurses who are already working in the epilepsy field; a launch date for this program has not yet been determined (Personal communication, C. A. Tubby, AES, November 17, 2011). Although the Epilepsy Education Program is consistently among the top educational resources visited on the AES website, it has not been evaluated (Personal communication, C. A. Tubby, AES, September 28, 2011). Further, the committee encourages the AES to investigate more interactive educational options.
The AES previously offered a program called Teleconsults in Epilepsy that, over 8 years, presented 16 webinars targeted to nurses and other nonphysician health professionals, but the program was discontinued in 2009 due to lack of funding (Personal communication, C. A. Tubby, AES, November 17, 2011). The webinars were led by experts from various disciplines; they covered a wide range of topics, such as seizure recognition and diagnosis, comorbidities, learning disabilities, quality of life, vocational opportunities, SUDEP, and treatment side effects; and they offered CE credits for those who participated in the live webinars. Although the last webinar was hosted in 2009, the manuscripts and audio files are archived and available on the AES website.13 It appears that this program was among the few designed specifically for nurses and other nonphysicians, and the AES may be able to fill some of the remaining gap through the nurse-focused content being developed for the Epilepsy Education Program, above.
In recent years, the AES has attempted to develop more interactive educational opportunities. The society partnered with Aurora Health Systems and TheraSim to develop an interactive epilepsy patient simulation module called “Waiting for Your Diagnosis.” The module was designed for general neurologists and featured two clinical case studies that involved a simulated patient interview, diagnostic testing orders, and simulated treatment and follow-up. The program was available for CE credit for physicians through June 2011 (Personal communication, J. Melin, AES, November 16, 2011). However, the AES faced a number of challenges in developing and implementing this program, including loss of funding, lack of interest among general neurologists despite an e-mail marketing effort, and challenges in developing an algorithm to provide the underpinnings of the case studies. In reviewing the program, after only a few dozen neurologists used the module, the AES ultimately decided not to continue marketing it (Personal communication, J. Melin, AES, November 16, 2011).
The AES has recently formed a potentially fruitful collaboration with the National Association of Epilepsy Centers (NAEC) to develop an online, interactive program (described below) to improve patient safety in EMUs. Despite some setbacks, online and interactive approaches to education are promising and deserve further exploration. Significant and creative efforts will be required to promote and incentivize the use of these modules by health professionals inside and outside the epilepsy field.
Epilepsy organizations have developed an array of educational opportunities to teach health care providers about the epilepsies. They need to continue to lead efforts to promote improved education and to expand efforts to reach the full range of health professionals. These organizations need to forge partnerships with each other and with other professional organizations (e.g., the AAN, ABPN, and those listed in Box 5-3 and Appendix D), in order to develop, implement, and evaluate innovative approaches. Partnerships are essential for expanding the reach of the resources that are available and are especially important when funding is scarce. Partnerships with organizations that represent other neurological diseases and disorders (e.g., autism spectrum disorders, stroke, Alzheimer’s disease) also could be especially beneficial in expanding the reach of educational efforts.
Although the NAEC’s 2010 guidelines for specialized epilepsy centers primarily focus on the essential elements of care delivery, some guidance on professional education within the centers also is included. The guidelines note that CE offered through the centers “can take the form of journal clubs, case management conferences, didactic lectures, development of care plans or clinical pathways, and quality assessment and improvement activities” (Labiner et al., 2010, pp. 2325-2326). Despite promulgating professional education as a goal for epilepsy centers, the NAEC has not collected data from epilepsy centers about the actual educational opportunities they offer (Personal communication, E. Riker, NAEC, September 20, 2011). A survey of opportunities, format, and frequency could be beneficial in establishing best practices for engaging clinicians in continuous, interdisciplinary learning within epilepsy centers.
The specific educational area highlighted in the NAEC guidelines is the need for educating nurses about patient safety. The guidelines indicate that “there should be a formal educational program at centers to assure nursing competency with regard to patient safety. This should include epilepsy-specific training for nursing staff that will be responsible for the patients undergoing video-EEG monitoring and other diagnostic testing” (Labiner et al., 2010, p. 2325). The number of centers that have formal programs of this nature is unknown. However, the NAEC and AES currently are
partnering to develop an online program called “Enhancing Patient Safety in Epilepsy Monitoring Units,” which could be implemented across all epilepsy centers and will benefit physicians, nurses, and END technologists. The program will include modules and case studies that will cover areas such as a culture of safety, injury and adverse events, assessing safety, patient and family education, and transitions to outpatient care and will include systematic and individual aspects of patient safety. The objectives of this program are to “provide standardized information, teach appropriate skills, and make usable resources on patient safety and preferred practices readily available to professionals caring for people in monitoring units” and to promote interdisciplinary approaches to patient safety (Personal communication, C. A. Tubby, AES, September 28, 2011). The development of this online program and the collaboration between the NAEC and AES signify important steps toward improving the education of clinicians who care for patients in epilepsy centers.
Significant opportunities exist for epilepsy centers not only to play a role in educating health professionals within the centers, but also to develop partnerships and educational opportunities for other health professionals in the communities and regions where they are located. The NAEC guidelines say that “comprehensive epilepsy center personnel [should] also participate in education of the larger health care community” (Labiner et al., 2010). While this may happen in some locations, the extent of any such efforts has not been documented.
Epilepsy centers provide an important venue for educating a wide range of health professionals about the epilepsies. The education of health professionals could be made a priority among the criteria for epilepsy center accreditation (Chapter 4). Continued collaboration between the NAEC and AES could facilitate definition of best educational practices and improve educational programs and resources for many disciplines. Opportunities to use innovative teaching approaches and technologies, including high-fidelity simulation, also could be explored.
Health professionals need good skills in communication and patient education (see also Chapters 4 and 7). They play an essential role in educating patients and families about the epilepsies and in directing them to accurate and reliable resources and tools to improve knowledge, skills, and self-management. In contrast, poor clinician-patient communication is a major barrier to patients’ ability to successfully navigate the health care system, act on basic health instructions, and self-manage chronic or other health conditions. Studies indicate that patients recall as little as half of what their
physicians tell them during an outpatient appointment (Schillinger et al., 2003). Physicians need to confirm that patients understand their condition (e.g., specific seizure type, epilepsy syndrome, seizure triggers), how to carry out treatment and medication instructions, and risks associated with their condition and nonadherence or discontinuation of their treatment regimen. However, in one diabetes study, physicians assessed patients’ recall and comprehension of new concepts in only one in five patient encounters, even though such practices have been shown to improve clinical outcomes (Schillinger et al., 2003). Therefore, it is critically important that health professionals provide patients and their families with written information about their specific seizure type, epilepsy syndrome, and treatment plan to augment discussions that happen in the clinical setting.
In order to educate patients and families effectively, health care providers must be knowledgeable and skilled in communicating and conveying information that meets the individual needs and preferences of patients. A UK survey highlighted the desire of patients with epilepsy to have physicians who are both knowledgeable and effective communicators (Poole et al., 2000). In addition, patient-rated quality of care also increases when health care providers use patient-centered communication and shared decision making (Thapar and Roland, 2005).
Based on the discussion presented in Chapter 7, it is important that health professionals learn how to
• recognize the critical junctures for patient and family education—at diagnosis, during the first year, when there is a change, in treatment options (e.g., introduction, switch, discontinuation), or when a new concern develops (Box 7-5);
• understand the specific information needs and preferences of patients and their families and take into consideration factors related to health literacy and culture, including cultural differences that may exist between them and their patients (Chapter 7);
• listen actively and put the patients and their needs first when providing education and counseling;
• be competent in patient and family education and communication, including targeting education to the specific needs of the patient;
• be aware of informational resources for patients and families that are available online and through local epilepsy organizations; and
• promote the use of self-management tools and programs.
The preceding review of current information about efforts for educating health professionals about epilepsy reveals several important points:
• Because of epilepsy’s prevalence and its diverse comorbid conditions, most clinicians need at least a basic knowledge of epilepsy diagnosis, treatment, comorbidities, and mortality risks.
• Primary care providers and others providing epilepsy services need a deeper understanding of the epilepsies and more skills and ongoing educational opportunities (a priority list of educational areas for health professionals is included in Box 5-5).
• Ideally, epilepsy education programs would be evidence-based, with content designed to meet providers’ needs and fill identified knowledge gaps; programs would be delivered in ways most likely to improve practice; and effective incentive systems would encourage participation by a wide range of health professionals.
• Epilepsy education programs should reflect current research findings, promote best practices, incorporate clinical guidelines, and undergo evaluation to ensure that educational objectives are being met.
• Providers need to know how to educate other members of the care team and patients and families.
• Educational innovations—interactive online courses, increasingly sophisticated simulations, and other means—need to be developed, tested, and evaluated, so that limited resources for educational programs are used most effectively.
• Innovative and effective strategies should be used to train health professionals throughout the educational continuum and into their careers, through robust CE programs.
• Epilepsy centers and organizations have an important leadership role in designing high-quality educational programs, but they need to work collaboratively with each other and with other professional associations and credentialing bodies within and outside the epilepsy field, in order to ensure the programs’ quality, relevance, value, and sustainability.
• Epilepsy centers and organizations should be at the forefront of disseminating high-quality educational tools and resources to health professionals, making them available online, and promoting their use.
• Research is needed on the scope and penetration of current epilepsy education and training in order to identify specific gaps and make improvements.
In order to ensure the highest quality of care for people with epilepsy and their families, the committee believes that health professionals should have—at a level appropriate to their roles, responsibilities, and scope of practice—knowledge and skills regarding the following:
• various seizure types and syndromes associated with the epilepsies, broadly, and mechanisms for recognizing and diagnosing them;
• appropriate responses to seizures, seizure first aid, and response and treatment for status epilepticus;
• etiologies of and risk factors for seizures and the epilepsies, with a focus on prevention;
• available treatments—including medications, diet, devices, and surgery— and the efficacy and effectiveness of those treatments—including awareness of which treatments work best for which patients, their possible side effects or harmful interactions, and the risks associated with discontinuation or nonadherence;
• available clinical guidelines, best practices, and quality indicators for ensuring the best possible care for people with epilepsy;
• risks associated with seizures and the epilepsies, such as accidental injury, early mortality (e.g., sudden unexpected death in epilepsy, suicide);
• the full range of comorbid conditions—including somatic disorders, neurological disorders, mental health conditions, cognitive disorders, infectious diseases, infestations, disabilities, injuries, and nutritional problems—and the impact they have on a patient’s health and quality of life;
• factors related to quality of life and burden of the disorder on patients and families;
• available health care and community resources and services, such as epilepsy treatment centers, sources of information for patient and family education, family support groups, and tools for self-management;
• approaches to personalizing care based on the patient’s social situation, cultural background, health literacy level, and other personal and family factors;
• effective strategies for patient and family education and patient self-management;
• the role of other health professionals in providing care for individuals with epilepsy and best practices in referring patients to other clinicians;
• stigma that people with epilepsy face and strategies for reducing stigma; and
• applicable laws and regulations, such as driving restrictions for individuals with active seizures.
Throughout this chapter, the committee has provided the basis for its research priorities and recommendations regarding improvements needed in epilepsy education for health professionals that are detailed in Chapter 9. In order to improve epilepsy education for health professionals, additional research and time needs to be devoted to
• define the essential knowledge and skills for the various professions;
• identify knowledge gaps and information needs;
• evaluate existing educational materials and learning opportunities to ensure they reflect current research, clinical guidelines, and best practices;
• explore and develop innovative educational tools and technologies that are interactive and engaging; and
• disseminate educational information and tools more broadly.
Partnerships among epilepsy organizations and relevant professional boards and associations, such as the AES, ILAE, Epilepsy Foundation, and those listed in Appendix D, will be critical to realizing these goals.
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