6

Quality of Life and Community Resources

Having epilepsy is about much more than having seizures. People with epilepsy and their families typically face an array of challenges to daily living that vary with the severity and nature of the epilepsy disorder and that may change as the individual gets older. The negative effects on quality of life can be severe and involve family and social relationships, academic achievement, and opportunities for employment, housing, and the ability to function independently. Family and community support is critical across a range of services. Improvements in community services and programs are needed to ensure that they are individually centered to meet the needs of the person with epilepsy; locally focused, taking into account the full range of resources in the area; easily accessible; thoroughly evaluated; closely linked to health care providers, particularly epileptologists and epilepsy centers; and innovative and collaborative. Actions necessary to achieve these goals include identifying and disseminating best practices in the provision of epilepsy services and innovative collaborations with organizations and agencies focused on other neurological and chronic conditions or on similar service needs.

We saw four pediatric neurologists in that first year. The fourth doctor told us to stop worrying about stopping the seizures because he could not figure out her EEG [electroencephalogram]. He told us to concentrate on her quality of life. She was 4, not talking, no longer walking, and could not even smile. We were losing everything. What quality of life did she have and where was the bottom of this spiral? We did not want to find out, but we did. We now live at the bottom of the spiral looking up.

-Janna Moore and Tom Weizoerick



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6 Quality of Life and Community Resources Having epilepsy is about much more than having seizures. People with epi- lepsy and their families typically face an array of challenges to daily living that vary with the severity and nature of the epilepsy disorder and that may change as the individual gets older. The negative effects on quality of life can be severe and involve family and social relationships, academic achieve- ment, and opportunities for employment, housing, and the ability to function independently. Family and community support is critical across a range of services. Improvements in community services and programs are needed to ensure that they are individually centered to meet the needs of the person with epilepsy; locally focused, taking into account the full range of resources in the area; easily accessible; thoroughly evaluated; closely linked to health care providers, particularly epileptologists and epilepsy centers; and innovative and collaborative. Actions necessary to achieve these goals include identify- ing and disseminating best practices in the provision of epilepsy services and innovative collaborations with organizations and agencies focused on other neurological and chronic conditions or on similar service needs. We saw four pediatric neurologists in that first year. The fourth doctor told us to stop worrying about stopping the seizures because he could not figure out her EEG [electroencephalogram]. He told us to concentrate on her quality of life. She was 4, not talking, no longer walking, and could not even smile. We were losing everything. What quality of life did she have and where was the bottom of this spiral? We did not want to find out, but we did. We now live at the bottom of the spiral looking up. –Janna Moore and Tom Weizoerick 269

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270 EPILEPSY ACROSS THE SPECTRUM It is a terrifying helplessness that one feels as a parent knowing that your child’s brain is misfiring so badly that if left to continue untreated it will result in a vastly reduced life expectancy and severely reduced intellectual function. –Jeffrey Catania E pilepsy is much more than seizures. For people with epilepsy, the disorder is often defined in more everyday terms, such as challenges in school, uncertainties about social and employment situations, limitations on driving a car, and questions about independent living. Family members also may struggle with how to best help their loved one and main- tain their family life. Because of the range of seizure types and severities and the high rate of comorbid health conditions, the types of issues that have an impact on quality of life for people with epilepsy and their families and the degree to which they are affected vary widely. As a result, the range of community services potentially needed may be extensive (Table 6-1). This chapter aims to provide a brief introduction to the diversity of ways in which the lives of people with epilepsy are affected by the disorder and the range of community efforts that can provide support and assistance. The chapter begins with an overview of quality of life and the facets of quality of life that are particularly relevant for differing age groups. The major areas of focus for community services are then discussed—families, day care and school, sports and recreation, employment, transportation, housing, and first aid training—with each section providing the commit- tee’s thoughts on next steps and opportunities to be explored. The chapter concludes with a discussion of navigating the broad array of community services and cross-cutting opportunities to improve services for people with epilepsy and their families. OVERVIEW OF THE IMPACTS OF EPILEPSY ON QUALITY OF LIFE Quality of life is a person’s subjective sense of well-being that stems from satisfaction with one’s roles, activities, goals, and opportunities, rela- tive to that individual’s values and expectations, within the context of cul- ture, community, and society. According to the World Health Organization (1996), “Quality of life is defined as individuals’ perceptions of their posi- tion in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (p. 5). The term “health-related quality of life” is generally used when re- ferring to quality of life in the context of a person’s health status (CDC, 2011a; Wilson and Cleary, 1995). Health-related quality of life is multi- dimensional, and for people with chronic conditions such as epilepsy, it is often related to functioning in three areas: physical, psychological, and social (Elliott and Mares, 2012; Koot, 2001; Solans et al., 2008). For the

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271 QUALITY OF LIFE AND COMMUNITY RESOURCES TABLE 6-1 Spectrum of Potential Epilepsy-Related Needs and Community Services Types of Needs Community Services Information needs about the • Nonprofit organization websites with general disorder, treatments, and health information about epilepsy (e.g., epilepsyfoundation. services (Chapter 7) org; epilepsy.com) • Nonprofit organization websites with information specific to an epilepsy syndrome (e.g., dravet.org; tsalliance.org) • Federal and state websites and information resources • Health care providers, including community health workers • Case managers and social workers • State and local Epilepsy Foundation affiliatesa Information needs about local • Nonprofit organizations community services • Social workers, case managers Help in coping with the disorder • Support groups and the associated comorbidities • Self-management programs and challenges • Counseling School-related needs • Cognitive testing and educational assistance • Individualized education programs (IEPs) • Teachers and school counselors who are informed about epilepsy Employment-related needs • Vocational programs, vocational rehabilitation programs • Disability-related organizations and government agencies Transportation-related needs • Social service organizations • Local transportation agencies • Government agencies Housing-related needs • Social service organizations • Nonprofit organizations, including faith-based organizations • Government agencies Recreation and leisure • Camps • Sports and recreational programs Assistance for family members • Respite care programs and caregivers • Support groups for family members NOTE: As indicated throughout the report, family members, friends, caregivers, and others are key providers of social and psychosocial support. aThe Epilepsy Foundation is a nonprofit organization with a national office and more than 50 affiliates nationwide that offer varying services. SOURCE: Adapted from IOM, 2008.

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272 EPILEPSY ACROSS THE SPECTRUM purposes of this report, the committee uses the term quality of life to incor- porate health-related quality of life. Many of the physiological aspects of improving quality of life (e.g., improved treatment options, optimal care, improved access to care) are discussed in Chapter 4. The burden of seizures and epilepsy, particularly severe forms of epi- lepsy or disabling comorbidities, can be overwhelming for many individuals and their families. The social and emotional toll of care (sometimes round- the-clock care) can place financial and emotional strains on marriages and families, altering roles, relationships, and lifestyles. Family members may need to take extensive leave or unexpected days off work that can disrupt careers and drain family finances. Many speakers at the committee’s work- shops emphasized that epilepsy—regardless of its level of severity—creates life challenges because of the unpredictability of seizures (Box 6-1). Studies that have examined the economic impact of epilepsy find that the indirect costs to society (productivity-related costs) generally exceed direct costs (treatment-related costs). A number of validated generic and epilepsy-specific instruments are used to assess quality of life (Chapter 2). In a systematic review of 22 cost-of-illness studies conducted around the world, among those that used reasonably comprehensive accounting for indirect cost, the indirect costs of epilepsy ranged from 12 to 85 percent of total costs (Strzelczyk et al., 2008). A study of the cost burden of epilepsy in the United States estimated a total annual cost of $12.5 billion per year, $10.8 billion in indirect costs (86.5 percent) and $1.7 billion in direct costs (13.5 percent) (Begley et al., 2000). Overall, lifetime productivity is esti- mated to decline 34 percent for men and 25 percent for women. Estimates of indirect costs are significantly higher for people with refractory epilepsy (Begley et al., 2000). Children and Adolescents In general, research comparing quality of life across different chronic conditions indicates that children and adolescents with epilepsy have a rela- tively high physical quality of life, but fare much worse in the psychologi- cal and social quality-of-life domains. For example, in a study comparing children with epilepsy with children with asthma, those with epilepsy had better quality of life in the physical domain but significantly lower quality of life in the psychological and social domains (Austin et al., 1994). Many studies have focused on the psychosocial challenges faced in childhood. Recent comparison studies demonstrate that children and ado- lescents with epilepsy have relatively more social problems than children and youth who do not. Social problems in children and adolescents include feelings of being different, social isolation, and being subject to teasing and bullying (Elliott et al., 2005). Children with epilepsy who were 3 to 6 years

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273 QUALITY OF LIFE AND COMMUNITY RESOURCES COSTS OF EPILEPSY Box 6-1 At the March workshop, Lori Towles, the mother of Max, who is 17 years old, detailed the impact of epilepsy on Max and their family. Max had brain surgery in 2010 to remove the lesion that was causing his seizures and in December 2011 celebrated 18 months of being seizure free. $3,000 The amount I’ve paid to an advocate to secure services for Max at his current high school because of the ignorance of the school district regarding epilepsy and students with medical disabilities 19 Anti-seizure pills Max has taken per day 10 Medical and service providers that make up Max’s support team 9 Anti-seizure medications he’s tried 6:30 Pill-time—morning and night—it’s set as an alarm on everyone’s cell phone in the house 5 Number of caring and gifted teachers that have come to the house to teach math, English, and science in the last 3 years 4 Number of neurologists he sees regularly 3 Number of times Max has received the Anointing of the Sick 2 Number of additional diagnoses: ADD at age 7 and anxiety at age 10 due to the seizures 1 Years of home schooling while we tried to find a working combination of medications to control the seizures 0 Number of times he has said, “Why me” 0 Number of friends he has now Countless • ours waiting in line at the pharmacy, driving to doctors’ appointments, H and documenting his seizure activity • ays missed from school due to seizures D • nsulting and rude remarks made by classmates (ignorant and informed) I because of his twitching, mumbling, seizing, and falling asleep in class • eetings, e-mails, and phone calls to his teachers and school support M personnel to explain what to expect with his medical condition • ays missed from my work to take him to doctors appointments, have D meetings at school, and just be there for him • inutes where my daughter and I watch Max slip away into another place M while his brain seizes • rayers from family and friends, coworkers, and neighbors P NOTE: ADD = attention deficit disorder.

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274 EPILEPSY ACROSS THE SPECTRUM old showed fewer age-appropriate social skills (Rantanen et al., 2009). Children with epilepsy ages 8 to 16 were found to have significantly lower social skills (cooperation, assertion, responsibility, and self-control) com- pared to healthy children; however, they did not differ significantly in social skills from children with chronic renal disease (Hamiwka et al., 2011). In a somewhat older group, youth ages 11 to 18 with epilepsy had poorer social competence, with girls having significantly less social competence than boys (Jakovljevic and Martinovic, 2006). Having a chronic condition might help explain some of the poorer so- cial skills described among children with epilepsy (Hamiwka et al., 2011). Beyond that possibility, Caplan and colleagues (2005) identified a number of other variables associated with social problems in children with epilepsy, including lower IQ, externalizing behavior problems, racial/ethnic minor- ity status, and impaired social communication skills. In this study, seizure variables (e.g., age of onset, frequency, duration) were not related to social functioning. In addition, a prospective study of children and adolescents who had epilepsy surgery showed no changes in social functioning one year later, regardless of surgery outcome (Smith et al., 2004); however, improve- ment in social functioning was found after 2 years (Elliott et al., 2008). In childhood epilepsy, school performance and academic achievement are commonly affected, as described later in this chapter. Compared to children with other chronic health conditions, siblings, and control groups, children with epilepsy are at increased risk for mental health conditions such as depression and attention problems (Rodenburg et al., 2005). In the 1999 nationwide British Child and Adolescent Mental Health Survey, rates of mental health comorbidities were higher in children with epilepsy (37 percent) than in children with diabetes (11 percent) or in control children (9 percent). In children with epilepsy and another type of comorbidity, such as cognitive or neurological deficits, the rate of mental health comorbidities was even higher (56 percent) (Davies et al., 2003). Children with epilepsy and intellectual disability have high rates of mental health conditions; in one study, more than 90 percent of children with epilepsy and intellectual disability could be classified as having a psychiat- ric diagnosis also (Steffenburg et al., 1996). A meta-analysis of 46 studies found that internalizing problems such as anxiety, depression, and social withdrawal were more common in children with epilepsy than externalizing problems such as aggression or delinquency (Rodenburg et al., 2005). Prior to the past decade, it was generally assumed that mental health conditions and other comorbidities occurred in response to having a chronic condition, such as epilepsy. Studies of children with new-onset sei- zures, however, have demonstrated that mental health conditions, cognitive problems, and behavioral problems can occur very early in the disorder and in some cases precede the onset of seizures (Austin et al., 2001, 2011;

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275 QUALITY OF LIFE AND COMMUNITY RESOURCES Jones et al., 2007; Oostrom et al., 2003). In addition, epidemiologic studies have shown that attention deficit hyperactivity disorder (ADHD) and other mental health conditions are risk factors for developing seizures in children (Hesdorffer et al., 2004; McAfee et al., 2007) (Chapter 3). A number of other risk factors for mental health comorbidities have been identified. Seizure severity and frequency are associated with an in- crease in mental health comorbidities in some but not most studies (Austin and Caplan, 2007). Family-related psychosocial variables, such as greater family stress, fewer family resources, negative child and parent attitudes about epilepsy, poorer coping skills, and poorer family adjustment also were associated with higher rates of mental health comorbidities in children (Austin and Caplan, 2007). The authors concluded that research has not identified the causal direction of children’s mental health comorbidities and that disruptions in the family environment and mental health conditions in the child are most likely reciprocal. Although for some individuals, epilepsy is an experience of childhood with seizures stopping during adolescence or early adulthood, for many other people seizures continue into adulthood and others live with the long- term effects that seizures have had on their cognitive or social development (Geerts et al., 2011; Kokkonen et al., 1997; Shackleton et al., 2003). For example, a 35-year prospective, population-based study in Finland found that compared to adults without epilepsy, adults who had epilepsy during childhood had poorer social outcomes in adulthood; they had less formal education, were less likely to be married or have children, and were more likely to be unemployed (Jalava et al., 1997; Sillanpää et al., 1998). Ad- verse lifespan outcomes have been found to be associated with histories of neurobehavioral comorbidities including early learning or cognitive and psychiatric problems (Kokkonen et al., 1997; Shackleton et al., 2003). In working to reduce the health and quality-of-life impacts of epilepsy, it is critical to address the needs of all individuals affected by the disorder. Adults Surveys of adults have identified risk factors for reduced quality of life for people with epilepsy, including having a greater number of seizures, longer duration of seizures, and earlier age of seizure onset (Baker et al., 1997; Jacoby and Baker, 2008; Kerr et al., 2011; Wheless, 2006). Other fac- tors affecting quality of life include side effects of seizure medications, lack of adherence to medications, depression or anxiety, lack of social support, stigma, and concerns about employment (Aydemir et al., 2011; Baker et al., 2005; Hovinga et al., 2008; Taylor et al., 2011b). Higher rates of comor- bid mental health conditions for adults with epilepsy compared to those without are described in Chapter 3, and large surveys indicate that adults

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276 EPILEPSY ACROSS THE SPECTRUM with epilepsy are relatively likely to report more mentally and physically unhealthy days per month than adults without epilepsy, with the highest rates found in those with seizures in the past 3 months (Kobau et al., 2007, 2008; Wiebe et al., 1999) (Figure 6-1). Results from a large U.S. survey also indicated poorer social outcomes for adults with a history of epilepsy, compared to those without, including being less likely to be married and more likely to have lower levels of edu- cation, employment, and income (see Table 6-2 and discussion later in this chapter on employment and epilepsy) (Kobau et al., 2008). Older Adults The quality of life for older adults with epilepsy is understudied (Devinsky, 2005). A recent study by Laccheo and colleagues (2008) dem- onstrated that older adults with epilepsy have a significantly lower quality of life across all domains when compared with the general population. No. of Unhealthy Days in the Past 30 Daysa Overall unhealthy 20 Physically unhealthy 16 Mentally unhealthy Activity limitation 12 8 4 > 1 Seizures No History Inactive Active No Seizures Epilepsyb Epilepsyc of Epilepsy in Past in Past 3 Monthsc 3 Months Epilepsy Status FIGURE 6-1 Health-related quality of life in adults with epilepsy. aSelf-reported measure of health-related quality of life (Behavioral Risk Factor Surveillance System data). bRespondents with self-reported, doctor-diagnosed seizure disorder or epilepsy who had not had a seizure in the past 3 months and were not taking medication to control epilepsy. cRespondents with self-reported, doctor-diagnosed seizure disorder or epilepsy who were currently taking medication to control it, had one or more seizures in the past 3 months, or both. SOURCE: CDC, 2011b; based on data from Kobau et al., 2008.

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277 QUALITY OF LIFE AND COMMUNITY RESOURCES TABLE 6-2 Comparison of Adults With and Without a History of Epilepsy With History of Without History of Epilepsy Epilepsy (n = 2,207) (n = 118,638) % % Marital status • Married or unmarried couple 55.5 64.1 • Formerly married 22.9 18.0 • Never married 21.5 17.9 Income • < $25,000 40.9 26.3 • $25,000 to $49,999 30.0 29.7 • ≥ $50,000 29.2 43.9 Employment status • Employed 45.8 61.6 • Unemployed 6.8 5.0 • Unable to work 23.7 4.8 • Other (homemaker, student, or retired) 23.7 28.6 Could not visit doctor because of cost • Yes 23.7 13.4 • No 76.3 86.6 Self-rated health • Good, very good, or excellent 63.0 84.2 • Fair or poor 37.0 15.8 Life satisfaction • Very satisfied or satisfied 83.4 94.6 • Dissatisfied or very dissatisfied 16.6 5.4 SOURCE: Kobau et al., 2008. Because a relatively higher percentage of epilepsy in older adults is a result of stroke, brain tumor, or dementia (Chapter 3), each with the potential to decrease quality of life, it might be anticipated that compared to other people with epilepsy, the quality of life would be lower in older popula- tions. However, this study did not find a difference in quality-of-life scores between older adults with epilepsy and other age groups with epilepsy (Laccheo et al., 2008). The authors noted that instruments evaluating all facets of quality of life for older people with epilepsy need to be developed (Laccheo et al., 2008). The impact of epilepsy on quality of life may reflect some differences by age and time since diagnosis. A study of three adult groups (young, middle- aged, and older) with epilepsy found that young and middle-aged adults had higher physical functioning and poorer psychological functioning than

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278 EPILEPSY ACROSS THE SPECTRUM older adults (Pugh et al., 2005). The authors propose that having epilepsy made it more difficult for middle-aged adults to accomplish the many tasks of middle age, such as providing financial and emotional support to the family, mentoring the younger generation, and providing support to aging parents. In other studies, quality of life was not found to differ between older and younger people with epilepsy, however, older adults diagnosed later in life reported more anxiety and symptoms of depression than those diagnosed earlier (Baker et al., 2001) and more concern about medication side effects (Martin et al., 2005). FAMILIES My family and I took a trip to Florida once, and in the midst of my en- joyment and bliss, [my brother], who had been seizure-free for a couple months, had a relapse. [It] sent my parents into shock, my sister into tears, and me into a hurricane of resentment, fear, anger, and hatred. Why did he have to have these things at the most inopportune times? . . . I was afraid [my brother] would die, but I disliked that every family conversation fo- cused on his disease. And I didn’t want to disturb the already fragile nest which was my family by inserting my own issues regarding the situation. –Joseph Abrahams [W]hen I was 12 years old, my mother, who had suffered a stroke at the age of 29, had begun to have seizures. ln the coming weeks she was diagnosed with epilepsy and our lives were never the same. . . . As an adolescent, I struggled with being my mother’s primary caretaker. . . . I vacillated between fear and anger, grief and bitterness, self-sacrifice and resentment. These emotions are often conveyed by parents of children with epilepsy, but l’m here to tell you that those feelings are no less intense for the children of those who suffer. lmagine being the one immediately responsible for a patient’s care—and now imagine shouldering that burden as 12- or 13-year-old. –Carmita Vaughan Epilepsy in one family member can negatively affect the quality of life of the entire family (Baker et al., 2008; Ellis et al., 2000; Lv et al., 2009; Taylor et al., 2011a). Epilepsy can be more disruptive to the family than many other chronic conditions because of its hidden, episodic, and unpre- dictable nature; potential for injury and death; frequency of comorbidities; and associated stigma. Episodic chronic health conditions are considered among the most stressful for families, because even during periods of no symptoms, the family remains on alert in anticipation of problems (Rolland, 1994). Concerns about the safety and possible death of the per- son with epilepsy can further increase the stress and anxiety experienced by families. Comorbidities, such as depression and cognitive deficits, present additional demands on the family’s attention. Finally, the stigma associated

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279 QUALITY OF LIFE AND COMMUNITY RESOURCES with epilepsy and the possible fears that people with epilepsy and their families associate with seizures in public can curtail social and leisure ac- tivities, increasing social isolation and further reducing quality of life (Ellis et al., 2000; Fisher, 2000). The literature contains few studies focusing on the quality of life of the family, rather than the person with epilepsy, and most family studies assess effects on the parents of children with epilepsy (Ellis et al., 2000). Studies comparing families of children with epilepsy to families of children with other chronic conditions or healthy children consistently demonstrate that families of children with epilepsy experience more dysfunction and parental anxiety, depression, and worry (Lv et al., 2009; Rodenburg et al., 2005). Although families of adults and older adults with epilepsy have been studied much less, findings indicate that the quality of life of these families is similarly affected (Ellis et al., 2000). Research is needed to identify the impact on the quality of life and psychosocial adjustment of family mem- bers and the services that might be particularly helpful to them in learning to cope. Limitations of the literature include small sample sizes, studying only one person from each family, focusing on mothers, an underrepresen- tation of men and racial/ethnic minorities, and a lack of focus on families with very young children (Duffy, 2011). The committee’s vision is for all family members of people with epilepsy to have access to resources, support, and services that would allow them to make an optimal adjustment to having a family member with epilepsy and to attain the highest possible physical, emotional, and social well-being. The next section reviews what is known about the impact of epilepsy on the quality of life of the family, followed by how these negative effects can be reduced by improving programs and services. Three broad areas are discussed: emotional health, family social and leisure activities, and employ- ment and role expectations. Impact on the Emotional Health of Family Members Epilepsy can have a negative effect on the emotional and psychological health of family members. Parents of children with epilepsy—the most stud- ied group—had high rates of worry, stress, anxiety, and depression symp- toms; this is especially true for parents of children with refractory epilepsy (Duffy, 2011; Lv et al., 2009; O’Dell et al., 2007b; Taylor et al., 2011a; Thompson and Upton, 1992; Wood et al., 2008). A common parental worry focused on the future of the child with epilepsy (Baker et al., 2008; Ramaglia et al., 2007). Some family members appear to be more at risk for a negative emotional impact. The emotional impact on parents of younger children, unmarried parents, and parents of children and adolescents who have both epilepsy and comorbidities have been shown to produce a rela-

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