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CHAPTER 95 QUALITY OF LIFE WITH EPILEPSY
According to the World Health Organization Quality of Life Group, quality of life (QoL) is defined as the individual perception of position in life in the context of value system, goals, expectations, standards, and concerns (1). As for any chronic disease, there is a component of psychosocial adjustment when living with epilepsy. The stigma and misconceptions that surround epilepsy come from the general public’s lack of understanding about the condition. This includes response to seizures and to individuals who have them. People with epilepsy have limitations that affect how they think of themselves as individuals. This stigma badly affects the health and well-being of these individuals as a whole. In addition, comorbidities, seizure frequency, and antiepileptic drugs (AEDs) affect QoL in epilepsy.
HISTORICAL OVERVIEW
QoL is not a new concept and can be traced back to the days of Greek philosopher Aristotle (2). According to the Center for Disease Control “health” includes physical, mental, and social dimensions (2,3). In much the same way, epilepsy is a multidimensional disease affecting individuals physically, mentally, and socially (4). QoL is subjective and is thereby defined differently by a number of groups and populations (5). For this reason, it is hard to measure. The U.S. Department of Health and Human Services states that QoL is synonymous with well-being and can be defined by both positive and negative emotions in one’s life (6). QoL is influenced not only by a person’s health but also by his or her day-to-day functioning. Health-related quality of life (HRQOL) is a disease-related measure that explores how one’s health status affects one’s QoL (3). It is important in epilepsy to be cognitive of how the condition is interfering with daily tasks (3).
QUALITY OF LIFE IN EPILEPSY
In children with epilepsy (CWE), lack of accurate knowledge about the condition has been associated with social anxiety and poor self-esteem (7). Disruption of normal tasks required to be attained by different developmental stages impacts the social functioning of the individual with epilepsy (7).
In Early and Middle Childhood
In this stage, children are learning tasks to become independent. They need a family environment that facilitates their development and is conducive to exploration of the world around them. Parents of CWE are distressed about seizure probability, hence restricting child social interactions and potentially hindering their development both socially and emotionally. Studies looking at level of parental anxiety and socialization in CWE describe that anxious parents are more likely to have children with poor socialization skills. Parental skills are another important issue in CWE; because the child has a chronic illness, parents feel guilty enforcing family rules, which consequently impacts negative behaviors (7).
In Adolescence
One of the most important developmental tasks of adolescence is the formation of identity. In this stage, adolescents build a sense of emotional and physical competence. Epilepsy impacts the ability to feel confident about emotional and physical well-being, and feeling unable to perform some tasks impacts self-esteem. Bullying is frequent in this stage and impacts the way adolescents perceive themselves and their world. In a study examining adolescents’ attitudes toward peers with epilepsy, three-quarters of the adolescents in the general population believed that peers with epilepsy were more likely to be bullied. Also, less than one-third of adolescents reported that they would date someone with epilepsy (8). A separate study found that adolescents with epilepsy felt that the stigma of having a chronic debilitating condition set them apart from their peers. They also felt that the uncontrollability of the seizures made it hard to become independent (9). In addition, driving is an important developmental task in late adolescence, and people with epilepsy feel that the inability to drive limits opportunity for participation in social activities (7).
In Adulthood
Most of the studies on psychosocial function on adults with epilepsy were conducted in clinical population samples, limiting their generalization. Employment is key in the personal development of adults and is a predictor of QoL in patients with epilepsy (10). Many studies have reported on the struggles that patients with epilepsy face gaining and maintaining employment. The unemployment rates for people with epilepsy are reported to be around 42% to 50% and are higher than in the general population. Patients feel the epilepsy is an important barrier to gaining employment (11).
Important cultural differences have been reported on rates of marriage in people with epilepsy. In developed countries, rates of marriage are around 66.2% overall (10), 32% for men and 58% for women (11). In a British study, 50% of people with epilepsy were married. In India, laws that prohibited people with epilepsy from getting married were only recently repealed (12). Other developing countries still have negative connotations associated with epilepsy, which limits the potential for people with epilepsy to get married.
Woman with epilepsy are affected differently than men with epilepsy. It is vital that this be addressed early on in the diagnosis of epilepsy in females. Health needs unique to the female and her sexuality extend beyond pregnancy, and it is never too early to start counseling (13). In the prepubescent and pubescent female and throughout the rest of female adult life (including menstruation years, pregnancy, and menopause), seizure frequency, severity, and duration are affected. Seizure frequency may be directly related to the menstrual cycle in the pattern known as catamenial epilepsy (13). Folic acid supplementation should be discussed at the start of AEDs in the menstruating woman of any age (13). In addition to other potential side effects of AEDs, their cosmetic side effects need be considered when starting treatment in the female. Cosmetic effects of AEDs, such as acne, weight gain/loss, and hirsutism, affect a woman’s self-image and thereby affect her QoL. It is important to know that what is acceptable to the clinician is not always acceptable to the patient (14,15). Communication between the patient and the provider is very important, as sometimes the deleterious side effects of higher doses of AEDs could worsen the QoL more than the lesser seizure control previously attained with the lower dose of the medication. Patients might also neglect to share with the provider the dose of the AED that they are actually taking.
The Role of Stigma and Quality of Life
The negative social perception of epilepsy dates back to the Biblical New Testament where epilepsy is mentioned as “a madness.” Early primitive societies attributed the cause of epilepsy to demonic possession or as a consequence of negative karma by the individual or family (8). In some ancient cultures, people with epilepsy were segregated in a remote location to prevent “contagion” of the illness. The evolution of the concept of epilepsy from “badness to sickness” has potential important correlations with the role of stigma (16). Early studies reporting increase of aggressive behavior, criminal behavior, sexual misconduct, and negative personality characteristics have certainly perpetuated the stigma that patients with epilepsy face. Scambler (17) describes how people with epilepsy exposed to negative perceptions about the disease develop a “special identity” that is certainly related to the exposure to stigma.
Cultural beliefs have an important role in societal stigma against epilepsy. In the highly educated population, the lack of understanding about the disease impacts societal views about epilepsy. In the United States, Austin et al. (8) stated 22% of adolescents reported uncertainty about epilepsy being contagious. Westbrook et al. (18) remarked how up to 50% of the families studied decided to keep the condition secret from others. Falcone et al. (19) identified that 50% of families decided not to disclose the epilepsy diagnosis to the school. Bauman et al. (20) reported that one out of four of the families surveyed believe that having a child with epilepsy in the classroom deteriorates the learning environment.
PSYCHOSOCIAL ADJUSTMENT OF PEOPLE WITH EPILEPSY
McQueen et al. (21) described two different models to understand the psychosocial adjustment in people with epilepsy. The medical model focuses on severity of epilepsy and is the driver of the psychosocial adjustment. The sociologic model attributes the adjustment to the perception of the individual’s condition or social stigma.
Seizure frequency has been reported by many studies as the most important predictor of psychosocial functioning. The better seizure control, the better the QoL. QoL directly relates to seizure frequency and severity. What may be a medically safe frequency to the provider may not be defined the same by the patient who is having the seizures, and the same goes for seizure severity (14). In addition, frequency and severity and how both affect QoL may vary from the caretaker’s opinion to the epilepsy patient’s opinion.
Chronicity is another important factor; newly diagnosed people usually adjust better than do patients with chronic epilepsy. The age of onset of epilepsy may also have a key role in psychosocial adjustment (19). For example, the first 8 years of life are key in the development of social skills; when epilepsy starts in this important developmental period, it might also have important repercussions in the development of social skills. Parents also play a very important role in the development of social skills, and overprotective parents or social isolation might also have an important role in the inability of youth with epilepsy to develop appropriate social interaction with peers (19). A patients’ perception of his or her own ability has an important key role in QoL, and good self-perception was correlated with better QoL in epilepsy. Some have suggested that the patient’s own perception of disability was a stronger predictor than was seizure frequency in affecting different domains of QoL such as employment or social interaction (19).
In a study attempting to elucidate the effect of the different factors on QoL, Suurmeijer et al. (10) reported that <5% of QoL was related to the clinical aspects of epilepsy (onset, seizure frequency, and side effects of the medication) and only 15% to clinically related aspects such as perception of epilepsy and health perception. Social functioning, self-efficacy, and psychological functioning contributed twice as much to the QoL compared to the clinical aspects of epilepsy. Social support was reported as a key factor in the emotional adjustment to having a chronic illness such as epilepsy.
THE ROLE OF PSYCHIATRIC COMORBIDITIES IN QUALITY OF LIFE IN PATIENTS WITH EPILEPSY
Psychiatric comorbidities are frequent in patients with epilepsy. Among psychiatric comorbidities in patients with epilepsy, depression is one the most frequent. In fact, the prevalence of depression in epilepsy appears to be higher than in other chronic illnesses. In a population-based study involving 18,000 individuals, the prevalence of depression for patients with epilepsy was 29% compared to 17% in those with diabetes and 16% in those with asthma (22). Epidemiologic studies indicate that 10% to 20% of patients with epilepsy and 20% to 60% of patients with recurrent seizures have depression (23). Likewise, rates of psychopathology are very high, ranging from 37% to 77% in children and adolescents with epilepsy (23–25). A meta-analysis of 29 cohorts of epileptic patients demonstrated increased suicidality as compared with the general population (26). Despite continued progress in the treatment of epilepsy, the psychosocial outcome in adults is reported as poor, even in patients who reach seizure freedom (23). Patients with epilepsy and depression have some of the lowest scores on QoL, even when seizures are under control (23).
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