Impact of epilepsy in adolescence: A UK controlled study
Introduction
Adolescence is a turbulent period of development marked by identity formation and self-definition [1], a period when individuals pay particular attention to peer norms and beliefs [2]. Adolescents engage in social activities and begin to prepare for employment, relationships, and driving [3], [4]. These are all important aspects in the move toward achieving independence [5]. It is thus recognized as a crucial time for the acquisition of knowledge and social skills that allow for natural integration into society [6].
The majority of individuals emerge from this transitional period with a positive self-image, a strong sense of self-identity, and an ability to interact positively with their friends, family, and society as a whole [6]. Epilepsy is the most common neurological disorder in adolescents, with a prevalence of 1.5–2% [2], [7], [8]. Its presence can impact on the formation of such independence through its social, educational, emotional, and behavioral consequences [5]. Recent studies have demonstrated that for the adolescent with epilepsy, this particular period may be difficult to negotiate [9], [10], [11]. This can be explained by the prohibitive impact that epilepsy can have on many aspects of the adolescent’s life, including schoolwork, sports, employment, and driving [12].
A study investigating the relationship between stigma and self-esteem in adolescents [13] using a multivariate approach found that low self-esteem could be predicted by high seizure frequency and the belief that epilepsy was stigmatizing. Studies have shown that children with epilepsy have poorer perception of control, as well as lower self-esteem, than those without epilepsy [14]. Austin and Dunn [15] found that children with epilepsy were concerned about seizures, their effects, their timing, and what restrictions they would impose on their day-to-day activities. They also reported fear of seizures, concern about why they had them and whether they would be the subject of bullying or teasing, and guilt about the anxiety their parents experienced. These findings suggest that children with epilepsy may be at greater risk from anxiety and depression as a consequence of the fear of the reactions of others. A number of studies have identified individual predictors of adjustment to epilepsy in children and adolescents with the condition. These include being a boy [16], seizure control, polytherapy/monotherapy, and parental marital status [17], and seizure frequency [18].
Few studies, however, have examined whether the psychosocial problems associated with adolescents with epilepsy can be observed in adolescents without the condition to a similar or lesser degree. One study of adolescents with epilepsy (AWE) who were matched for age and sex with controls reported that the AWE group was more likely to report problems with transport and behavior in class, and had lower reading abilities, than the control group [19].
This study set out to examine whether the psychological difficulties observed in adolescents with epilepsy are unique or can be observed in populations without significant health problems and whether possessing knowledge of epilepsy is likely to ameliorate the effects of the condition on psychological functioning. The aims of this study were twofold: (1) to investigate psychological adjustment of adolescents with epilepsy in comparison to healthy control subjects (matched for age, sex, and reading ability); (2) to identify whether clinical and demographic variables and knowledge of epilepsy could influence psychological functioning in adolescents with epilepsy.
Section snippets
Methods
This study was a matched, controlled study. Adolescents aged between 12 and 18 with epilepsy were matched by age, sex, and reading ability (a surrogate for intellectual functioning) with adolescents who do not suffer from any physical or psychological health problems. Adolescents with epilepsy were recruited from two major epilepsy centers in the United Kingdom (London and Liverpool, where specialist adolescent epilepsy clinics have been established). The control group was recruited from
Results
Of the 305 adolescents with epilepsy who attended epilepsy clinics at the two centers, 126 were not considered suitable (learning difficulties, non-English-speaking, other severe medical and/or mental disabilities). Of the remaining 179, only 42% (75) agreed to participate. Participants were matched by age, sex, and reading age. Of the 75 adolescents, 5 could not be matched with any of the controls for reading age and, thus, were not included in the between-group analysis.
Discussion
The aims of this study were twofold: (1) to investigate psychological adjustment of adolescents with epilepsy in comparison to healthy control subjects (matched for age, sex, and reading ability); (2) to identify whether clinical and demographic variables and knowledge of epilepsy could influence psychological functioning in adolescents with epilepsy.
Adolescents with epilepsy had significantly higher levels of depression relating to interpersonal problems and anhedonia, as measured by two of
Acknowledgments
This study was supported by an educational grant provided by the Charles Sykes Memorial Fund. The authors dedicate this work to the memory of Charles Sykes, a young man with epilepsy who dedicated his brief career as a psychologist to understanding the impact of the condition.
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