Age-Related Considerations

Ann Jacoby

Gus A. Baker

Introduction

The goals of therapy for people with epilepsy were discussed in an earlier chapter. They can be seen as being broadly concerned with reducing the impact of the condition on daily functioning and overall quality of life (QoL) by reducing seizure frequency and severity, minimizing the side effects associated with prescribed treatment regimes, and providing the necessary information and support to enable patients to manage their condition successfully. In considering what constitutes appropriate therapy for any individual patient, it is important to recognize that the impact of epilepsy and its treatment will vary across a number of patient characteristics, of which age is an important one. The quality of people’s lives overall reflects the level of their functioning within a number of different spheres, and this may be enhanced or reduced by their condition and its treatment. However, the importance attached to optimal functioning within particular spheres varies at different stages of the life cycle, and as a result so does the extent to which the condition and its treatment are seen to impinge on quality of life.

This chapter considers the differential impact on quality of life of epilepsy and treatment for epilepsy at different stages of the life cycle—childhood, adolescence, and the earlier and later years of adulthood. Although the effects of epilepsy and its treatment on the quality of life may differ according to a person’s age group, there are nonetheless implications common to all age groups, and these are discussed first.

A chronic illness such as epilepsy is associated with several concomitant problems, regardless of the point in the life cycle at which it develops. Conrad³¹ identified among these the problem of managing the uncertainty that accompanies the onset of chronic illness; the impact that chronic illness can have on a person’s sense of self; the issue of stigma, which is more problematic in some conditions than others; the impact of chronic illness not only on the patient, but also on the patient’s family members; and the problem of managing treatment regimes. These are discussed in greater detail in the following paragraphs:

The problem of managing uncertainty in chronic illness. A defining quality of most chronic conditions, including epilepsy, is uncertainty, which relates not only to the interpretation of symptoms and the diagnosis, but also to the projected clinical course. Radley¹⁰⁰ argued that uncertainty is endemic to the situation of people who are chronically ill and “is not limited to one period of time or one situation.” A person with epilepsy can face uncertainty regarding whether and when seizures will recur, the nature of seizures and how they can best be controlled, and whether the illness will ultimately go into remission. The unpredictability of the nature and course of epilepsy can thus be a key factor in the problems it engenders, whatever the age of the person affected.
The impact of chronic illness on sense of self. A number of authors have considered the impact that a chronic illness has on a person’s self-concept.²¹^,²²^,²⁷^,¹⁴⁰ The restrictions imposed by chronic illness, the inability to fulfill former tasks and roles, the consequent social isolation, and the increased dependency on others combine to make chronic illness what Charmaz²⁷ described as a fundamental form of suffering because those who become ill have to contend with “a crumbling away of their former self-images, without simultaneous development of equally valued new ones.” This is clearly the case for people with epilepsy, who may face various statutory and nonstatutory restrictions as a result of their illness, find themselves unable or unwilling to pursue particular activities, either because of their fears of precipitating seizures or as a result of the attitudes of others toward them, and consequently become increasingly socially isolated. The impact on self-concept may be felt equally acutely by the child with epilepsy excluded from sporting activities at school and the elderly person with epilepsy who is no longer regarded as capable of caring for a grandchild.
The issue of stigma. It has been argued that all chronic illnesses are stigmatizing to a greater or lesser degree by virtue of their representing a deviation from a state of health,⁹⁵ but epilepsy has, historically, been a stigmatizing condition par excellence.¹²⁶ For this reason, people with epilepsy often appear to regard their condition as a “new moral weight” that they have to carry,¹¹⁴ and some see it as having an extremely negative impact on the quality of their lives. A number of authors have shown how the parents of children with epilepsy can act as what Goffman⁵⁶ referred to as “stigma coaches,” inculcating in their offspring a sense of shame about their condition and counseling them not to disclose it to others.¹¹⁴^,¹³⁹ Scambler¹¹⁰ contended that because having epilepsy has more salience for people in some roles and situations than in others (and so, potentially, a greater effect at some periods of the life cycle than at others), the degree to which a person feels stigmatized by epilepsy will vary.
Impact of chronic illness on family members. Coping with chronic illness takes a toll not only on the person affected, but also on the patient’s family members, so that their quality of life too can be diminished.⁴^,⁵^,¹³⁴ Venters¹³⁴ listed among the range of familial consequences of chronic illness increased communication difficulties, accentuation of preexisting marital problems, and increased social isolation and disorganization of family routines; although Venters was concerned with a specific condition, cystic fibrosis, it seems likely that these outcomes are common to all chronic conditions, epilepsy included. Confronted with the problem of chronic illness, many families become dysfunctional. Scambler and Hopkins¹¹²
examined the way epilepsy is accommodated in families and concluded that to survive intact the family must reestablish the equilibrium lost at the onset of chronic illness in one of its members.
Managing treatment regimes. Managing a treatment regime is part of the “work” of a chronic illness,¹¹⁹ and people who are chronically ill often have to become experts in their own treatment, considering the associated costs and benefits and adhering to or adapting their prescribed regimes accordingly. Pinder⁹⁷^,⁹⁸ illustrated clearly how people who are chronically ill are constantly involved in maintaining a balance between minimizing the symptoms of their illness and incurring the side effects of medication. The problems of managing a drug regime are nowhere more apparent than in the sociological literature on epilepsy. Schneider and Conrad¹¹⁴ and Scambler¹⁰⁹ found that adults with epilepsy frequently self-regulated their antiepileptic drugs, missing, raising, or reducing doses at particular times and in particular circumstances. West,¹³⁹ considering children with the condition, reported that their parents often decided to contravene the medication rules specified by the child’s physician out of anxiety about the effectiveness of antiepileptic drugs and their possible side effects.

Age-Related Impact of Epilepsy

Although all people with epilepsy have to contend to some degree with the problems just outlined, the precise extent to which their impact is felt by any one individual is determined by a number of factors relating to their personal and social situation, of which age is one. This section gives more detailed consideration to the way in which such problems are manifested in childhood, adolescence, adulthood, and older age.

Impact of Epilepsy in Childhood and Adolescence

Epilepsy is the most common chronic neurologic problem of childhood, its incidence being highest in the first decade of life.⁶⁰ It is now known that a number of the childhood epilepsies are benign and will either remit or be easily controlled by appropriate treatment, whereas others have a much poorer prognosis and are often accompanied by significant brain dysfunction and developmental delay.⁴¹ The epilepsies of early childhood tend to carry the worst prognosis because they are commonly associated with congenital disorders or birth and perinatal trauma.⁹⁹ At least 70% of childhood epilepsies, particularly the benign partial epilepsies, are known to remit at or before adolescence¹; some, including severe myoclonic epilepsies and the Lennox-Gastaut syndrome, persist through adolescence and into adulthood; a third group, including juvenile absence and juvenile myoclonic epilepsy, begin in adolescence.³⁹

Main Quality-of-Life Effects in Childhood

Compared with parallel work in adults, research into the impact of chronic illness on quality of life in children and adolescents has been hampered by a number of difficulties concerning measurement. These relate to the rapid physical, cognitive, and emotional changes that occur through this period,⁴³ which necessitate the development of scales focusing on narrow age ranges and developmental levels. Although efforts have been made recently to develop appropriate methodologies for obtaining information regarding quality of life from children and adolescents themselves,²⁸^,⁴⁷ studies of the impact of chronic illness on quality of life in childhood have generally rested on the assessments of parents, for reasons that are self-evident: Very young children are unable to express themselves verbally, and school-age children may have difficulty filling in forms or schedules or may be intimidated when asked questions by an unfamiliar researcher.

Despite such difficulties, an important finding from the work that has been done is that children and adolescents with epilepsy appear to have a relatively more compromised quality of life than children and adolescents with other chronic conditions or their healthy peers.¹²^,⁵⁰^,⁹⁰ Identified risk factors for poor quality of life include epilepsy severity, antiepileptic drug (AED) side effects, and lower socioeconomic status.³⁶ Miller et al.⁹⁰ compared quality of life in children with epilepsy and healthy controls, using a generic measure, the Child Health Questionnaire, and showed that the former had more limited life quality in terms of physical function, emotional well-being, self-esteem, parental impact, and family activity; predictors for impaired quality of life were number of AEDs and presence of comorbid neurologic impairments. Räty et al.¹⁰¹ found that even uncomplicated epilepsy exerted a negative impact, especially in the areas of competence. Both they and others³⁶^,⁹¹ reported that patients in late adolescence are at greater risk of compromised quality of life than are those at earlier developmental stages, and as discussed later in this chapter, it appears that such effects sometimes persist into adulthood.

In a recent review of quality-of-life issues affecting children and adolescents with chronic illness,¹³⁵ self-esteem and school functioning were identified as being among the most significant. The relevance of both these issues for children with epilepsy is demonstrated in the work of a number of authors. Long and Moore⁸³ collected information from children with epilepsy about the effects of being “different” from other children and found that they had significantly lower levels of self-esteem than their healthy siblings. Poor self-concept among children with epilepsy has also been reported by Matthews et al.,⁸⁷ Hoare,⁶⁴ and Austin et al.¹² Matthews and Barabas⁸⁶ studied 45 children between the ages of 7 and 12 years, 15 with epilepsy, 15 with diabetes, and 15 in good health. Compared with the rest, the children with epilepsy had poorer esteem in relation to their intellectual and academic functioning and were also more likely to see themselves as unpopular with their peers.

Role of Important Others in Mediating Childhood Quality-of-Life Effects

Matthews and Barabas hypothesized that children’s self-concept is threatened by a sense of lack of control, experienced as a result of the unpredictability of their seizures—an element of epilepsy that can, of course, be as much a problem for the families of children with epilepsy as for the children themselves.⁷ The “vulnerable child syndrome,”⁵⁸ in which the fear and anxiety of both child and parent inhibit normal development, is not an uncommon phenomenon in families with children with a chronic illness such as epilepsy. Overprotectiveness on the part of parents may leave them reluctant to grant the child autonomy, so that his or her sense of competency and self-worth is threatened.¹⁴⁴ Williams et al.¹⁴¹ documented the role of parental anxiety in compromising the quality of life of children with epilepsy and concluded that targeted interventions and support may be critically important.

Table 1 An ecological framework for understanding the role of family factors in child psychopathology

Proximal factors	Distal factors	Context factors
Quality of parent–child relationship, e.g., rejection/acceptance, parental attachment Parenting, e.g., level of parental support and control	Parent characteristics, e.g., maternal depression, parental beliefs concerning their competence in parenting, ineffective coping strategies Parental congnitions, e.g., perceptions concerning epilepsy, parental expectations for the child	Marital conflict Family adaptation Family conflict/cohesion Family stress Social support
Adapted from Rodenburg et al.¹⁰⁴

Matthews and Barabas also suggested that children’s sense of self is the outcome of the feedback they receive from important others, and that such feedback may be fundamentally different for them than for children without epilepsy. There is evidence for this in the studies of interaction in families of children with epilepsy.⁴⁹^,⁵⁷^,¹⁰² In a recent review, Rodenburg et al.¹⁰⁴
attempted to address the question of whether the families of children with epilepsy differ from others on distinct family factors and whether these factors are linked to psychopathology in the affected child. The theoretical framework for their analysis distinguished among proximal, distal, and context factors (Table 1).

Summarizing results from 35 studies involving 1,400 children aged 5 to 25 years, these authors reported that, compared to controls, parents of children with epilepsy appear to be less supportive and competent and more inconsistent and authoritative, with fathers being overnurturing and mothers exhibiting higher levels of emotional overinvolvement. Families of children with epilepsy tend to be more rigid and less close and more stressed and to have fewer social resources and support. With regard to the role of these family factors, maternal warmth and encouragement are shown to reduce psychopathology in children with epilepsy, as are parental support, satisfaction with family relationships, and family social support, whereas maternal criticism, depression and worry about epilepsy, parental overcontrol, perceived limitations and stigma, and family stress and conflict increase it. The authors made some important observations about these findings: Emotional overinvolvement can generate positive, as well as negative, effects for the affected child’s adjustment; epilepsy is a stressor for parents as well as their affected child, but parental attitudes can become more positive over time; and lack of knowledge may induce negative parental perceptions of epilepsy but increasing knowledge can decrease parenting problems. They argued that future research should aim to determine the unique contributions made by family factors relative to neurologic and medication factors and to identify strategies to help families cope better with the challenges epilepsy in childhood can present.

Their conclusions are supported by the work of Oostrom et al.⁹³ who investigated factors associated with cognitive-behavioral function in children with newly diagnosed epilepsy attending mainstream school. Their analysis showed that in “epilepsy-only” children, context-related rather than epilepsy-related factors were important in predicting cognitive and behavioral disadvantages over time; children with persistent deficits were more likely to have shown behavior problems prediagnosis and to come from families with increased dysfunction and where the parents reported discontinuity in parenting style following the onset of epilepsy in their child. Similarly, Fastenau et al.⁴⁶ showed that in children with chronic epilepsy, neuropsychologic deficits had a smaller impact on their academic achievement if they were living in supportive and well-organized homes. These authors concluded that interventions that increase family structure, stability, and support can reduce the risk of adverse academic outcomes for such children and, it is hoped, their overall quality of life.

Quality-of-Life Effects for Family Members of Children With Epilepsy

The sometimes considerable effects of chronic illness on other family members, as noted in a number of sociological studies, are evidenced in epilepsy also. Perhaps as a result of parental preoccupation with and overprotectiveness of the affected child, families of children with epilepsy appear often emotionally skewed,⁵⁷ so that psychiatric morbidity is increased not only in children with the condition, but also in their siblings.⁵⁰^,⁶⁵^,⁶⁶ The effect on their other children was one of the main anxieties expressed by parents in the study by Ward and Bower,¹³⁷ who reported that siblings were often upset by the limitations imposed on the family as a whole as a result of the onset of epilepsy, jealous of their parents’ preoccupation with the affected child, and resentful at the increased responsibilities assigned to them in helping to care for the child. The negative impact on parents is apparent from the reported higher rates of psychological difficulties¹⁰⁵ and of separation and divorce among the parents of children with epilepsy than in the general population.¹¹⁵

Impact of Antiepileptic Drugs on Quality of Life of Children

That the adverse effects of AEDs can reduce the quality of life for children and adolescents with epilepsy is well recognized. Besag¹⁸ noted that although some antiepileptic drugs are notorious for causing gross overactivity and behavioral disturbance in children, others are known to have a marked sedative effect, particularly if used in combination. Aldencamp² reviewed findings from more than 300 studies (although not all in children) on the cognitive effects of antiepileptic drugs; these indicate associated impairments in memory, concentration, and mental and motor speed. The adverse effects of AEDS, particularly on cognition,¹³¹ have provided one of the major arguments for their withdrawal in children²⁵; it is interesting, however, that Aldencamp et al.³ studied drug withdrawal in 100 children who were seizure free for at least 1 year and found a significant improvement in their scores on only one of a large battery of cognitive tests. Whether this was because, as the authors suggested, the impact of antiepileptic drugs on cognitive function in children is limited, or because, as Dreifuss⁴⁰ argued, it is less likely to be reversible for children than for adults is not clear. Whatever the results of such studies, it is clear from investigating the issue of patient adherence with drug regimes¹³⁸ that parents
worry about the adverse effects of antiepileptic drugs on their children and so may decide to discontinue them; one study of the management of childhood epilepsy produced a figure for noncompliance of 60%.³⁵ With or without parental complicity, nonadherence to medication regimes appears to be a more common feature of adolescence than earlier childhood, a fact that Thornton¹²⁹ attributed both to a misunderstanding of the need for medication and an attempt to deny the “predicament” of having epilepsy. Wide fluctuations in blood levels of AEDs among adolescents have been reported by Takaki et al.,¹²³ indicating that erratic compliance was commonplace.

Reflecting concerns about further undesired effects of antiepileptic drugs on the developing brain, considerable emphasis has been given in studies of quality of life in children with epilepsy to emotional/behavioral issues¹⁰^,⁶⁴^,¹¹⁸^,¹²⁸ and the effect of epilepsy on school performance.⁶⁷^,¹¹⁸^,¹³⁰ Berg et al.¹⁷ assessed longitudinally the influence of epilepsy etiology and syndrome and seizure control for adaptive behavior in children; they concluded that in the majority of cases, it is in the normal range and shows no evidence of decline over time. The exception was for children with what these authors characterized as “epileptic encephalopathies” (including West syndrome and Lennox-Gastaut syndrome), who demonstrate impaired adaptation at the time of diagnosis and continue to experience further decrements. Austin and her colleagues examined academic achievement in children with both recent-onset and chronic epilepsy.⁹^,⁸⁹ In a group of children diagnosed 12 months previously, they showed that mean academic achievement was in the average range. The same was true for children with established but low-severity or inactive epilepsy, although not for those with high-severity epilepsy, in whom scores were significantly lower. In both recent-onset children and children with established epilepsy, academic performance was significantly associated with adaptive competency (i.e., working hard, behaving appropriately, and being happy). An unexpected finding from the work reported is that there were no changes in academic achievement over the course of the 4 years during which the latter group were followed, that is, children with high-severity epilepsy did not get any worse in terms of academic achievement, but neither did children whose epilepsy was reduced in severity get any better. These findings highlight the need to ensure that the focus on medical management of epilepsy does not lead to problems with academic performance being overlooked.

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