4

Health Care: Quality, Access, and Value

While significant progress has been made in developing seizure medications with fewer adverse effects, as well as in refining medical devices and surgical techniques for select types of epilepsy, much remains to be done to reduce the sometimes lengthy delays in diagnosis and referral to more advanced levels of care, to improve access to care for underserved and rural patients, to improve co-management of patients between primary care and specialty providers, and to improve care for those with refractory epilepsy. Efforts are ongoing to improve the quality of epilepsy care through the development and implementation of physician performance measures and other performance metrics. Involvement of epilepsy centers is critical to providing specialized care. Clarifying the role of primary care providers in epilepsy care is also crucial as is delineating clinical pathways and decision points for referrals. A patient-centered approach to health care is needed with an emphasis on the coordination of epilepsy-specific services with care for comorbidities and with links to community services. Actions needed to ensure that health care for people with epilepsy is evidence based, population based, and patient centered include accrediting epilepsy centers and establishing a network of centers, developing and implementing a quality care framework and performance measures, and enhancing the screening and referral options and protocols for early identification of epilepsy in high-risk populations, of comorbidities, and of refractory epilepsy.

My daughter (now 16) started having seizures when she was 9. Her first seizure was big and we thought she was dying … maybe she was having



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4 Health Care: Quality, Access, and Value While significant progress has been made in developing seizure medications with fewer adverse effects, as well as in refining medical devices and surgical techniques for select types of epilepsy, much remains to be done to reduce the sometimes lengthy delays in diagnosis and referral to more advanced levels of care, to improve access to care for underserved and rural patients, to improve co-management of patients between primary care and specialty providers, and to improve care for those with refractory epilepsy. Efforts are ongoing to improve the quality of epilepsy care through the development and implementation of physician performance measures and other performance metrics. Involvement of epilepsy centers is critical to providing specialized care. Clarifying the role of primary care providers in epilepsy care is also crucial as is delineating clinical pathways and decision points for referrals. A patient-centered approach to health care is needed with an emphasis on the coordination of epilepsy-specific services with care for comorbidities and with links to community services. Actions needed to ensure that health care for people with epilepsy is evidence based, population based, and patient centered include accrediting epilepsy centers and establishing a network of centers, developing and implementing a quality care framework and performance measures, and enhancing the screening and referral options and protocols for early identification of epilepsy in high-risk populations, of comorbidities, and of refractory epilepsy. My daughter (now 16) started having seizures when she was 9. Her first seizure was big and we thought she was dying . . . maybe she was having 161

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162 EPILEPSY ACROSS THE SPECTRUM a brain hemorrhage . . . we couldn’t figure it out. It was terrifying. . . . We were very blessed to meet a good neurologist from the start. He was rare—a small town doctor with the big town connections. . . . He encour- aged us to get a second opinion and was extremely accessible to us. He had personal experience with epilepsy in his family, a real plus. In my volunteering with the Epilepsy Foundation of Virginia, I have encountered many people whose neurologists did not refer them to an epileptologist or a neurologist with a special interest in epilepsy. –Laurie Kelly Like other rural-frontier populations, Wyoming’s citizens continually face problems in accessing quality health care and health education. Health care accessibility is particularly problematic in Wyoming, where distance, geography, inclement weather, and isolated communities all present chal- lenges for the state’s residents in gaining education and access to health care. –Richard Leslie I mproving the lives of people with epilepsy and their families involves sustained and coordinated efforts, ranging from increasing the under- standing of the biomedical mechanisms of the disorder to enhancing clinical treatment and community services. Because epilepsy is a common neurological disorder that can have many physical, psychological, cogni- tive, and social manifestations, quality care may require the knowledge and skills of a wide range of health and community service professionals and necessitate that people with epilepsy, family members, and caregivers are knowledgeable about the disorder, can recognize potential danger signs, and are skilled in self-management as appropriate. The committee’s vision for improving health care for people with epi- lepsy is that all individuals with epilepsy should have access to patient- centered care that incorporates a comprehensive and coordinated approach to addressing the physiological, psychological, cognitive, and social di- mensions relevant for each person and his or her family. This care is best delivered by a coordinated team of professionals that can assess and treat all facets of the patient’s condition and comorbidities and can integrate ap- propriate community services. As highlighted in the Institute of Medicine (IOM) report Crossing the Quality Chasm, “Health care should be: • Safe—avoiding injuries to patients from the care that is intended to help them • Effective—providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit (avoiding underuse and overuse, respectively) • Patient-centered—providing care that is respectful of and respon-

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163 HEALTH CARE: QUALITY, ACCESS, AND VALUE sive to individual patient preferences, needs, and values and ensur- ing that patient values guide all clinical decisions • Timely—reducing waits and sometimes harmful delays for both those who receive and those who give care • Efficient—avoiding waste, including waste of equipment, supplies, ideas, and energy, and • Equitable—providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic loca- tion, and socioeconomic status” (IOM, 2001, pp. 5-6). This chapter begins with an overview of epilepsy care (patterns of care, diagnosis, and treatment), followed by a discussion of the key components of improving care—quality, access, and value; it concludes with the com- mittee’s model of patient-centered, collaborative, and high-quality epilepsy care. A comprehensive and coordinated approach to health and human services is explored in this and subsequent chapters. OVERVIEW OF EPILEPSY CARE Patterns of Care As noted in Chapter 1, when someone first has a seizure the initial medical visit is generally to the emergency department or primary care pro- vider.1 Some health systems have first seizure clinics that explore potential diagnoses (Hamiwka et al., 2007), or patients may be referred to a general neurologist or an epileptologist, particularly if seizures recur frequently; however, little is known about referral patterns other than that there is tremendous variability. The likelihood of a referral may vary according to the seriousness of the patient’s condition, including the presence of comor- bidities; the patient’s age; demographic and social factors; the preferences of the patient, family, and health professionals involved; and availability of specialized health professionals. A community-based survey of people with epilepsy explored views and experiences of epilepsy care and found that primary care providers were the first health professionals consulted by 58 percent of respondents (Fisher et al., 2000b). During the course of their disorder, almost all (94 percent) had consulted a neurologist at some point, with 62 percent having a neurologist as their primary physician for epilepsy care at the time of the survey. Respondents were more likely to have consulted a neurologist if they had been diagnosed within the previous 1 Throughout the report, the term “primary care provider” is used to encompass many health professionals, including family physicians, general internists, general pediatricians, obstetrician-gynecologists, geriatricians, physician assistants, and nurse practitioners.

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164 EPILEPSY ACROSS THE SPECTRUM year, had a seizure in the previous month, were diagnosed before age 12, or had multiple seizure types. To obtain more information on patterns of epilepsy care, four differ- ent health care and surveillance systems (Geisinger Health System, Henry Ford Health System, South Carolina Epilepsy Surveillance System, and the Veterans Health Administration) agreed to assist the committee by querying their databases on health care utilization patterns of people with epilepsy. The data provided by these systems (Appendix B) highlight the variability in patterns of care, but they also reveal three common initial points of care where people are first evaluated: (1) in the hospital emergency department, (2) with a referral to a neurologist, or (3) during a regular visit with a primary care provider. Across the four systems, from 32 to 71 percent of patients’ first encounters were with neurologists. Evidence from several of these systems suggests that people with new-onset epilepsy use more health services than people with prevalent epilepsy. However, the types of services received during the initial year after diagnosis, such as the number of phy- sician visits or diagnostic procedures performed, varied widely across sys- tems. Evidence from some of the health systems seems to confirm that care of individuals with ongoing epilepsy (prevalent epilepsy) tends to stabilize over time, but again, the patterns varied among systems and also among subgroups within each system. For example, over the course of a year, 14 to 48 percent of epilepsy patients were treated in emergency departments, 8 to 55 percent were hospitalized, 21 to 75 percent had a neurologist visit, and 68 to 100 percent received seizure medications. The range in percent- ages of patients receiving seizure medications was more consistent across sites, ranging from 70 to 80 percent. More needs to be learned about these patterns of care and the extent to which variations in care affect patient outcomes. Information about patterns of care from non-neurologist health profes- sionals could not be obtained. Although nurses, social workers, psycholo- gists, psychiatrists, and vocational specialists are all described as important members of an interdisciplinary epilepsy care team (Labiner et al., 2010), whether and when patients or families are seen by these professionals varies between health systems. A clearer understanding of how multidisciplinary teams are best implemented and of the individual roles of health profession- als in the care trajectory is needed to identify best practices and improve quality of care. Diagnosis of the Epilepsies Accurately diagnosing epilepsy is challenging because clinicians rarely have the opportunity to observe seizures and there are many types of seizures and epilepsy syndromes with differing presentations. A clinician

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165 HEALTH CARE: QUALITY, ACCESS, AND VALUE typically diagnoses epilepsy based on the patient’s self-report or a fam- ily member’s report of seizures and the patient’s medical history. This is complicated by the fact that a number of medical conditions that are not epilepsy can look like seizures (Chapter 1). Diagnostic tests can provide relevant information, usually starting with the electroencephalogram (EEG) (Table 4-1). However, because the typical duration of an EEG is only 20 to 45 minutes, it is unlikely to coincide with an actual seizure. Further, the initial EEG may not show evidence of seizures in approximately half of people with epilepsy (Marsan and Zivin, 1970; Salinsky et al., 1987). Con- tinuous video-EEG monitoring, which can last from hours to days and is usually conducted in a hospital setting, is often the only way to definitively diagnose the type of seizure and affected areas of the brain. TABLE 4-1 Diagnostic Studies Used in Evaluating and Treating People with Epilepsy Diagnostic Tests Description Indication Electroencephalograph Measures electrical activity Useful for any individual with (EEG) in the brain suspected seizures Continuous video-EEG Combines long-term EEG Useful in determining seizure monitoring recording with video type; essential for patients recording of an individual’s undergoing a surgical evaluation behavior for epilepsy Magnetic resonance Uses magnetic fields Useful for imaging the brain for imaging (MRI) to detect structural lesions such as tumors and scar abnormalities in the brain tissue Computerized Uses radiation to detect Useful for detecting structural tomography (CT) structural abnormalities in abnormalities such as tumors as the brain well as hemorrhages Magnetoencephalography Uses magnetic signals to Useful primarily for patients (MEG) detect abnormalities in the undergoing surgical evaluation brain’s electrical activity Positron emission Uses radioactive tracers to Useful in determining the area tomography (PET) or assess glucose metabolism of the brain where seizures arise single positron emission or blood flow in the brain since these areas typically have tomography (SPECT) decreased glucose metabolism and blood flow in between seizures Genetic or metabolic Uses blood, urine, and Useful for diagnosing epilepsy- testing spinal fluid tests to related genetic or metabolic determine if there is a disorders. Although many tests genetic cause of the are available, there is not yet a epilepsy standard screen SOURCES: Chandra et al., 2006; Engel, 1984; Erbayat Altay et al., 2005; Knake et al., 2006; McNally et al., 2005; Provenzale, 2010; Stockler-Ipsiroglu and Plecko, 2009; Thadani et al., 2000; Wheless et al., 2004.

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166 EPILEPSY ACROSS THE SPECTRUM Advances in technology permit family members and other caregivers to record seizures as they occur. Kotani and colleagues (2007) described a case study where the mother of a teenager with epilepsy was able to capture his seizure on a cell phone camera, which a doctor had not been able to diagnose due to seizure infrequency. Similarly, the improved vi- sualization of seizures through digital cameras with video capabilities and video monitoring in home settings may be particularly beneficial for individuals with infrequent seizures or with more than one type of seizure and for those who do not have easy access to epileptologists and epilepsy monitoring units. Also, the recording of seizures using web-based tracking systems, diaries, or journals can help people with epilepsy and their fami- lies maintain records of seizure activity and evaluate patterns with their health care provider (Le et al., 2011). The observation of seizure patterns can help identify a target for medication and lifestyle interventions to im- prove seizure management. Treatment of the Epilepsies For many people with epilepsy, current treatment options are effective in reducing or eliminating seizures. However, medication side effects are a concern, and approximately one-third of people with epilepsy do not re- spond to medications (Kwan and Brodie, 2000). This report provides only a brief overview of the treatments for epilepsy and its comorbidities, which need to be tailored to the unique diagnostic and treatment considerations of specific individuals and also of specific populations, some of which are highlighted in Table 4-2. Seizure Medications The primary method of treatment for the epilepsies is medication aimed at controlling seizure recurrence, typically by decreasing brain excitation or increasing brain inhibition. In a population-based survey, Kobau and colleagues (2008) found that among adults reporting they have active epi- lepsy, 93 percent were currently taking a medication, and 55 percent had no seizures in the previous 3 months (Table 4-3). The first medication to be used in the treatment of epilepsy in the 1800s was potassium bromide; more than 35 seizure medications have been introduced since then (Figure 4-1) (Loscher and Schmidt, 2011). Initially medications were developed that blocked sodium channels in neurons, resulting in reduced brain excitation or increasing inhibition of neurons through activation of inhibitory receptors (Brodie, 2010; Rogawski and Loscher, 2004). In the past 20 years, a better understanding of the patho- physiology of the epilepsies and epileptogenesis (the process by which epi-

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167 HEALTH CARE: QUALITY, ACCESS, AND VALUE TABLE 4-2 Diagnostic and Treatment Considerations for Specific Populations Population Diagnostic and Treatment Considerations Children • Diagnostic challenges of age-related clinical and electroencephalograph features of seizures • Different side effects and dosing schedules for medications • Identifying seizure medication formulations determined to be appropriate for children • Potential lifelong cognitive and disabling effects of seizures suffered during childhood • Helping children begin to take responsibility for self-management • Education of school personnel in recognition and treatment of seizures Youth • Impact of hormonal changes on seizures, side effects of medications, drug interactions, and comorbidities • Increased responsibilities for self-management • Impact of seizures, treatment, and comorbidities on educational and vocational planning and on driving and transportation Older adults • Potential for drug interactions with medications for other health conditions • Possible cognitive side effects of some medications • Increased potential for injury • Self management may be in jeopardy, depending on cognitive functioning caregiver assistance may be needed Women • Susceptibility to changes in seizures during menstrual cycle or at other times of hormonal fluctuations (e.g., menopause) • Potential impact of seizures and/or medications on reproductive functioning, pregnancy, breastfeeding • Risk for malformations and impaired cognitive development of offspring of women taking seizure medications or suffering seizures during pregnancy Individuals with • Communication difficulties may hamper diagnosis and ability to intellectual delineate the seizure type disabilities • Assessing drug toxicity or treatment side effects in patients with severe intellectual disabilities may be challenging • High risk of injury from seizures and side effects of medications • High rate of psychiatric comorbidities Underserved • Reduced treatment options relative to access to health services populations • Medication adherence • Other access and health literacy issues, including language barriers and the need, in some cases, for medical interpreters • High rates of comorbidities People with • Seizures associated with brain injury may be missed or misdiagnosed traumatic brain as mental health conditions or other physical problems injury • Seizure medications must be selected carefully to avoid exacerbating other problems of traumatic brain injury Oncology • Interactions of seizure medications with chemotherapeutic drugs that patients may decrease concentrations of chemotherapeutic agents in the body

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168 EPILEPSY ACROSS THE SPECTRUM TABLE 4-3 Adults with a History of Epilepsy, Behavioral Risk Factor Surveillance System, 2005 Total with History Active Epilepsya of Epilepsy (n = 1,626) (n = 919) Currently taking medication to control seizure disorder or epilepsy Yes 48.8 (44.1-53.6) 93.1 (90.3-95.1) No 51.2 (46.4-55.9) 6.9 (4.9-9.7) Number of seizures in previous 3 months None 71.0 (66.5-75.2) 55.1 (48.6-61.5) One 8.1 (5.8-11.1) 15.3 (11.1-20.7) More than one 15.0 (11.9-18.9) 28.6 (23.0-34.9) 1.0 (0.3-2.8)b No longer have 5.9 (4.0-8.6) aDefined as having been told by a doctor they had a seizure disorder or epilepsy and also responded that they were currently taking medication for epilepsy, had 1 or more seizures in the previous 3 months, or both. bRespondents who reported taking medication for epilepsy. SOURCE: Kobau et al., 2008. lepsy develops), as well as the development of animal models that mimic clinically relevant forms of the disorder, have resulted in medications with other specific mechanisms of action that achieve the same effect but with fewer side effects. These mechanisms include targeting calcium and potas- sium channels and the synaptic release and uptake of neurotransmitters (Brodie, 2010; Loscher and Schmidt, 2011; Rogawski and Loscher, 2004). Seizure medications can be categorized into those used to stop seizures and those used to prevent them. Drugs used to stop seizures are typically given intravenously, rectally, intranasally, or buccally. For example, status epilep- ticus is treated with intravenous lorazepam, diazepam, phenobarbital, or phenytoin (Abend et al., 2010). Rectal diazepam is often used in children as an outpatient rescue medication to stop seizures (Poukas et al., 2011). The vast majority of seizure medications are used in chronic therapy and taken daily. Chronic seizure medications are either broad-spectrum drugs that are effective in treating a variety of different seizure types or narrow- spectrum drugs that are primarily effective for specific seizure types (e.g., absence, myoclonic, tonic-clonic). Despite the large number of available drugs for epilepsy, patients re- main concerned about the effectiveness of medications in controlling sei- zures, side effects (e.g., headache, fatigue, cognitive impairment), being able to establish an appropriate dosing schedule, and the high cost of some medications (Fisher et al., 2000b). In a community-based survey, ap- proximately one-third of people with epilepsy reported that they were not

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169 HEALTH CARE: QUALITY, ACCESS, AND VALUE Eslicarbazepine acetate Lacosamide Rufinamide 35 Stiripentol Pregabalin Levetiracetam Third generation Tiagabine Topiramate 30 Gabapentin Felbamate Number of Seizure Medications Oxcarbazepine Lamotrigine Zonisamide 25 Vigabatrin Progabide Clobazam Clonazepam Valproate Carbamazepine 20 Second generation Diazepam Sulthiame Chlordiazepoxide Ethosuximide 15 Ethotoin Methsuximide Primidone Phensuximide Phenacemide 10 Corticosteroids/ACTH Paramethadione Mephenytoin First generation Trimethadione Acetazolamide 5 Phenytoin Phenobarbital Mephobarbital Borax Bromide 1850 1870 1890 1910 1930 1950 1970 1990 2010 Year of Introduction FIGURE 4-1 Seizure medications. NOTE: Some medications are not available in the United States. SOURCE: Loscher and Schmidt, 2011. Reprinted with permission from John Wiley and Sons. fully satisfied with their current seizure medication(s) and noted a range of problems including issues with cognition, energy level, and sexual function (Fisher et al., 2000b). For people whose seizures do not respond to medications, surgery or medical devices are potential treatment options. However, not all types of epilepsy are amenable to surgery. Today, surgically remediable epilepsy syndromes are easier to recognize than they were previously, largely be- cause of improvements in magnetic resonance imaging (MRI) and other imaging technologies, which allow noninvasive identification of areas in the brain with abnormal neural function. Unfortunately, the length of time from seizure onset to surgery remains quite long, averaging 17 to 23 years (Choi et al., 2009; Cohen-Gadol et al., 2006; Haneef et al., 2010) (see later discussion of access). A randomized controlled study found that 58 percent of people with mesial temporal lobe epilepsy who received epilepsy surgery were free

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170 EPILEPSY ACROSS THE SPECTRUM of disabling seizures by the end of the first year, compared to 8 percent among those who continued with medical therapy for 1 year (Wiebe et al., 2001). Long-term outcomes also are promising. De Tisi and colleagues (2011) found that 52 percent of adults who had undergone epilepsy sur- gery remained seizure-free (excluding simple partial seizures) 5 years after surgery and 47 percent were seizure-free after 10 years. Promising new, less invasive types of surgery for epilepsy are being evaluated (Chang and Huang, 2011). An evidence review that was conducted to develop practice param- eters for epilepsy surgery found that surgery’s benefits outweighed the benefits of continued medical therapy in people with mesial temporal lobe epilepsy, while not posing greater risk, and recommended consideration of referral to an epilepsy surgery center for individuals with refractory seizures (Engel et al., 2003). The biological, psychological, and social consequences of uncontrolled seizures have been well documented, but the timing of when these problems develop varies, complicating deci- sions regarding the timing of surgery. For many people, cognitive and behavioral problems are found early in the course of their epilepsy, and questions may arise as to whether surgery could prevent these problems from becoming disabling. Variability among epilepsy types and syndromes also complicates the question about when or if to consider surgery. This complexity is particularly true for children, some of whom stop having seizures when they get older (Berg et al., 2006; Langfitt and Wiebe, 2008). Further study is needed to assess the most beneficial timing of surgery, as well as its long-term results, impact on quality of life, and effectiveness compared to other forms of treatment. Devices implanted to electrically stimulate the vagus nerve have been found to reduce or eliminate seizures in some individuals (DeGiorgio et al., 2000, 2001, 2005; Elliott et al., 2011; Handforth et al., 1998; Uthman et al., 2004). Studies of vagus nerve stimulation in adults showed a mean seizure reduction of 49 to 64 percent 2 years after implanta- tion, with the number of seizures at least halved for 43 to 75 percent of patients (Rossignol et al., 2009). This technique also was shown to be cost-effective within 1.5 years of implantation (Helmers et al., 2011). Results among children with epilepsy have been variable (Englot et al., 2011; Rossignol et al., 2009); however, vagus nerve stimulation appears particularly effective for those with Lennox-Gastaut syndrome (Englot et al., 2011; Frost et al., 2001; Rossignol et al., 2009). Other forms of brain stimulation being tested include deep brain stimulation and focal responsive brain stimulation (Morrell, 2011). At present, these invasive therapeutic approaches are reserved for patients who are not good can- didates for surgery.

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171 HEALTH CARE: QUALITY, ACCESS, AND VALUE Additional Treatments Several additional types of treatments have been found to be helpful for controlling seizures, teaching people how to manage their epilepsy, and improving quality of life. Some of these therapies, such as behavioral therapy, are used as complements to medical treatment, while some—such as dietary therapy—may be used as a form of medical therapy. Further ef- forts are needed to study the effectiveness of some of these therapies. Dietary therapy is a treatment modality often tried for children with epilepsy. The observation that individuals with epilepsy have fewer seizures during fasting led to diets that reduce carbohydrate ingestion and induce ketosis (Wheless, 2008). Several small studies have shown reductions in seizures for people with epilepsy who adhere to the ketogenic diet, medium- chain triglyceride diet, modified Atkins diet, or low-glycemic-index diet (Kossoff et al., 2009; Payne et al., 2011); however, more research is needed in larger populations. Further, dietary therapy is rigorous, requiring daily adherence to a strict schedule, which can be a challenge for both the indi- vidual with epilepsy and his or her family (Kossoff et al., 2009). Many phy- sicians are reluctant to recommend dietary therapy because of the difficulty of adherence and the need for close monitoring by a dietician and clinician. Certain types of behavioral therapy can be considered a form of self- management2 (the strategies people use to manage their epilepsy and its ef- fects on their daily life). A behavioral therapy is usually intended to change unhealthy behavior and promote positive or healthy behavior. Many of these strategies overlap with educational efforts for patients and families (Chapter 7). For example, trigger management involves teaching people how to recognize or identify possible seizure triggers by observing envi- ronmental, personal, or lifestyle factors (such as lack of sleep, flashing lights, fever, or excessive alcohol consumption) that appear to increase their susceptibility to seizures. For many people, seizure control can improve if they avoid these triggers. Teaching about trigger management and lifestyle modifications is a frequent component of epilepsy care provided by nurses and social workers (Legion, 1991; Shafer, 1994). Other behavioral approaches include seizure control using relaxation, yoga, biofeedback, and counseling; self-control approaches or acceptance and commitment therapy using individual and group sessions; and mind- body techniques (Andrews and Schonfeld, 1992; Lundgren et al., 2006, 2008a,b; Snead et al., 2004; Wagner et al., 2010). Relaxation treatment studies, while limited in number, generally show positive results in reducing seizures and improving quality of life (Dahl et al., 1987; Puskarich et al., 2 Asnoted in Chapter 1, the committee adopted the concept of “optimal self-management,” recognizing that it represents a wide range of possibilities and that what is optimal for one person may be beyond the capacity of another.

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