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5 Health Professional Education 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, phar- macy). 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 in- terventions 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 pro- grams that are available. Negative perceptions of people with epilepsy among health professionals contribute to stigma and can affect quality of care. Epi- lepsy 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. 231
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232 EPILEPSY ACROSS THE SPECTRUM B uilding 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 comorbidi- ties, risks, and safety concerns; necessary social services; psychosocial and quality-of-life factors; and stigma. The specific types and depth of knowl- edge required vary across professions, depending on the roles, responsibili- ties, 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 avail- able 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 nec- essarily 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. How- ever, very little has been done to assess their specific knowledge gaps and in- formation 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 oppor- tunities, 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-
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233 HEALTH PROFESSIONAL EDUCATION 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 evolv- ing guidelines, best practices, and research advances. Ideally, the health care workforce would be sufficiently prepared to provide every person experi- encing 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. DEMONSTRATED KNOWLEDGE GAPS 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. –Susan Farber Through its work the committee identified three areas with documented knowledge gaps in epilepsy care: providing primary care, treating comor- bidities, 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 sensi- tively 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 com- plicated by chronic physical and mental conditions associated with aging and who may already have a complicated drug regimen;
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234 EPILEPSY ACROSS THE SPECTRUM • 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. Primary Care Each [pediatrician] asked about car seats, home safety, and second-hand smoke, but none noticed [the] seizures or developmental delays until we asked. –Carrie Baum 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. –Jim Ashlock 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 pa- tients (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 suf- ficient knowledge about diagnosing, treating, and referring patients with epilepsy to specialty care when needed. Primary care providers’ knowledge, skill, and comfort regarding di- agnosing 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-
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235 HEALTH PROFESSIONAL EDUCATION cians gain the majority of their knowledge pertaining to epilepsy during medical school through a combination of didactic coursework and clini- cal 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 neuro- logical 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 re- quire 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 tar- geted 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 epilep- sies. 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 Cur- riculum 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 in- cludes 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 medica- tion 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
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236 EPILEPSY ACROSS THE SPECTRUM 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 lec- tures 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 effec- tive in promoting practice changes among general practitioners, practice guidelines should be paired with targeted educational in- terventions (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 pro- vide 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 educa- tion 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 pa- tient recruitment to the health center (74 percent), and improved medication adherence (Adamolekun et al., 1999).
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237 HEALTH PROFESSIONAL EDUCATION As noted in Chapter 4, high-quality primary care services for people with epilepsy can lead to improved seizure control and reductions in emer- gency hospitalizations (Shohet et al., 2007). Targeted educational inter- ventions 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 im- portant 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 spe- cialist 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 comor- bidities), such as diabetes and cardiovascular disease (Chapter 3). Often these comorbidities, especially mental health conditions and cognitive im- pairment, 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 compo- nent 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
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238 EPILEPSY ACROSS THE SPECTRUM 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, par- ticipants 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 car- ing 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 depres- sion 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 interven- tions are necessary. In an effort to improve knowledge of mental health and cognitive comorbidities associated with epilepsy, Smith and colleagues (2007) dem- onstrated 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 medi- cations, and stress on behavior and learning; and suicidality. Despite the effectiveness of this small intervention, pediatricians and pediatric neu- rologists “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. Clini- cians’ 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 psycholo- gists, counselors, or psychiatric nurses. Apparently, despite the demon- strated educational needs and concerns of health professionals, few efforts have been made to develop corresponding educational programs or re- sources. Developing creative ways to encourage and incentivize health 1 Of those psychiatrists surveyed, 95 percent had worked with people with epilepsy and men- tal disorders previously and 48 percent frequently work with epilepsy patients with comorbid mental health conditions (Marchetti et al., 2004).
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239 HEALTH PROFESSIONAL EDUCATION 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 ex- ample, 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 pa- rameters 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 educat- ing 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 provid- ing 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 criti- cal 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).
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240 EPILEPSY ACROSS THE SPECTRUM These studies and others highlight the persistent knowledge gaps as- sociated with the specific needs of women with epilepsy, and they identify an important opportunity for targeted educational efforts. ATITTUDES AND BELIEFS OF HEALTH PROFESSIONALS 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. –Paula Apodaca Effective epilepsy care requires a productive and positive relation- ship and effective communication among health care providers and pa- tients 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 phy- sicians. 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 epi- lepsy (who may be characterized as having behavioral and emotional prob- lems, 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 comor- bidities. Two decades later, Hayes and colleagues (2007) highlighted atti- tudes 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 cul- tural variation, and managing patients with negative attitudes, including skepticism and denial. The resulting perception among some health profes- sionals is that people with epilepsy can be difficult to work with (Hayes
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241 HEALTH PROFESSIONAL EDUCATION 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 improv- ing quality of care (Thapar et al., 1998). The results from the few interna- tional 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 profession- als (Hayes et al., 2007; Sweetnam, 2011). Hayes and colleagues (2007) indicated that negative attitudes can interfere with professional relation- ships, which in turn affect referral patterns, effective interdisciplinary col- laboration, 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 pro- fessionals observed in other countries are prevalent in the United States or have persisted over time, some evidence suggests that attitudinal chal- lenges 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 ap- proach to improve quality of care through professional collaboration and co-management (Chapter 4).
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258 EPILEPSY ACROSS THE SPECTRUM 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 op- portunities 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 Ap- pendix D), in order to develop, implement, and evaluate innovative ap- proaches. Partnerships are essential for expanding the reach of the resources that are available and are especially important when funding is scarce. Part- nerships 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. Epilepsy Centers 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 activi- ties” (Labiner et al., 2010, pp. 2325-2326). Despite promulgating profes- sional 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 estab- lishing 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
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259 HEALTH PROFESSIONAL EDUCATION 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 technolo- gists. 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 pro- fessionals 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. EDUCATING HEALTH PROFESSIONALS TO EDUCATE PEOPLE WITH EPILEPSY AND THEIR FAMILIES Health professionals need good skills in communication and patient ed- ucation (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
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260 EPILEPSY ACROSS THE SPECTRUM 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 regi- men. 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 provid- ers 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 physi- cians 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 deci- sion 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 pa- tients 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 pro- viding education and counseling; • be competent in patient and family education and communication, including targeting education to the specific needs of the patient; • be comfortable discussing risks associated with the epilepsies and their treatments including SUDEP, suicide, and status epilepticus (Chapter 3, 4, and 7); • 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.
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261 HEALTH PROFESSIONAL EDUCATION CONCLUSION The preceding review of current information about efforts for educat- ing health professionals about epilepsy reveals several important points: • Because of epilepsy’s prevalence and its diverse comorbid condi- tions, 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 ongo- ing 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 encour- age participation by a wide range of health professionals. • Epilepsy education programs should reflect current research find- ings, 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 profes- sional 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 dis- seminating 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.
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262 EPILEPSY ACROSS THE SPECTRUM PRIORITY EPILEPSY EDUCATIONAL AREAS FOR Box 5-5 HEALTH PROFESSIONALS 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: • arious seizure types and syndromes associated with the epilepsies, v broadly, and mechanisms for recognizing and diagnosing them; • ppropriate responses to seizures, seizure first aid, and response and treat- a ment for status epilepticus; • tiologies of and risk factors for seizures and the epilepsies, with a focus e on prevention; • vailable treatments—including medications, diet, devices, and surgery— a and the efficacy and effectiveness of those treatments—including aware- ness of which treatments work best for which patients, their possible side effects or harmful interactions, and the risks associated with discontinua- tion or nonadherence; • vailable clinical guidelines, best practices, and quality indicators for ensur- a ing the best possible care for people with epilepsy; • isks associated with seizures and the epilepsies, such as accidental injury, r early mortality (e.g., sudden unexpected death in epilepsy, suicide); • he full range of comorbid conditions—including somatic disorders, neuro- t logical 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; • actors related to quality of life and burden of the disorder on patients and f families; • vailable health care and community resources and services, such as epi- a lepsy treatment centers, sources of information for patient and family education, family support groups, and tools for self-management; • pproaches to personalizing care based on the patient’s social situation, a cultural background, health literacy level, and other personal and family factors; • f fective s trategies f or pa tient an d f amily ed ucation an d pa tient e self-management; • he role of other health professionals in providing care for individuals with t epilepsy and best practices in referring patients to other clinicians; • tigma that people with epilepsy face and strategies for reducing stigma; s and • pplicable laws and regulations, such as driving restrictions for individuals a 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
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