Results: Good social outcome was significantly reduced in ... by restricting car driving (33%), work and occupation. (19%), and ... The school performance of 225 patients ...... Tessler R, Mechanic D. Psychological distress and perceived.
Epilepsiu, 38(6):708-715, 1997 Lippincott-Raven Publishers, Philadelphia 0 International League Against Epilepsy
Social Adjustment and Competence 35 Years After Onset of Childhood Epilepsy: A Prospective Controlled Study Merja Jalava, Matti Sillanpaa, *Carol Camfield, and *Peter Camfield Department of Child Neurology, University of Turku, Turku, Finland; and *Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada
Summary: Purpose: To study the effect of childhood-onset epilepsy without other neurologic deficit on adult social adjustment and competence. Methods: Social competence was studied in a prospective, population-based cohort of childhood-onset epilepsy after a mean follow-up of 35 years. One hundred patients (60% of the total cohort) had no other neurologic problems (“epilepsy only”), and for each patient, two matched controls, a “random” control and an “employee” control were chosen. Results: Good social outcome was significantly reduced in the “epilepsy only” cohort compared with random controls: education [cumulative odds ratio (COR), 2.4; 95% confidence interval (CI), 1.4-4.11; employability (COR, 7.3; 95% CI, 2.7-20.0); and marriage rate (COR, 3.7; 95% CI, 1.97.3). The patients with epilepsy rated their own ability to
control their lives as “poor or missing” four times more frequently than the employee controls. Patients receiving antiepileptic polytherapy, but not monotherapy, were significantly less satisfied with their present life (OR, 6.7; 95% CI, 1.9-24.1) and felt their general health was significantly poorer (OR, 5.1; 95% CI, 1.2-21.3) than did the employee controls. Furthermore, patients with continuing seizures were significantly less satisfied with their present life (OR, 4.1; 95% CI, 1.1-15.1) than were employee controls. Conclusions: Many patients with “epilepsy only” beginning in childhood have persistent and significant socialadjustment and competence problems in adulthood. Key Words: Pediatric epilepsy-Social adjustment in epilepsy-Education and employability in epilepsy-Life management in epilepsy.
The unpredictable nature of epilepsy can cause distress in persons even with well-controlled seizures and result in negative psychosocial consequences (1,2). According to Wall et al. (3), 77% of people with epilepsy felt that epilepsy limited their daily life by restricting car driving (33%),work and occupation (19%), and swimming (14%). Although the majority of children with epilepsy attend regular school, their grades tend to be below average (4). The school performance of 225 patients with childhood-onset epilepsy was not substantially different from that in the general population, with the exception of a higher percentage of subjects without any education (5). Of patients with uncontrolled seizures, 56% underwent mainstream education, and 44% received special education (6). Employability problems are experienced by 2575% of people with epilepsy, including “underem-
ployment” (7). A disproportionately high number of patients with epilepsy are employed in unskilled and poorly paid jobs (8,9). According to Callaghan et al. (lo), 40% of 343 patients with epilepsy attending a seizure clinic belonged to the social groups 5 and 6, compared with 14% of the general population. “Employed full-time” has been suggested as the only significant predictor of well-being among patients with epilepsy (9). Social relations with other people are important in psychosocial adjustment (11). Persons with epilepsy have a lower marriage rate and fewer friends than people without epilepsy (12-14). More than half of the sample of Rodin et al. (15) had psychological, social, or behavioral problems. A high prevalence of such difficulties has been reported by many investigators (6,9,16-26). In a U.K. community-based study of epilepsy in an unselected population of people, the most important predictor of psychosocial functions was current seizure activity (27). Psychological and social problems may impair the quality of life of persons with epilepsy even more than do the seizures themselves (28). A major contributing factor may be
Accepted January 15, 1997. Address correspondence and reprint requests to Dr. M. Jalava at TS-Group, PL 95, 20101 Turku, Finland.
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SOCIAL ADJUSTMENT AND COMPETENCE IN EPILEPSY restriction from driving, which has serious consequences in socialization, self-esteem, and employability (29-31). A confounding factor in many studies of social outcome in epilepsy is the effect of concomitant neurologic deficits or mental retardation. Very few data exist in the literature on the social competence of adults who in childhood have had or still have epilepsy but no neurologic deficit (8,32). Our hypothesis was that, in a population-based patient cohort with “epilepsy only” (i.e. epilepsy without other neurologic deficits), psychosocial problems are few if any and, therefore, no excess impairment of social adjustment and competence occurs. Our results showed that this is not quite the case. SUBJECTS AND METHODS Epilepsy cohort The original study population consisted of a prevalence cohort of 245 children younger than 16 years at the end of the year 1964. They were resident in the catchment area of the Turku University Hospital, had recurrent unprovoked seizures after the newborn period, and had “active” epilepsy with at least one seizure during the last 3 years (1961-1964). The original study design and earlier data were reported previously (33). The cohort was then prospectively followed up with cross-sectional studies every fifth year. In 1992, after a 35-year follow-up period (mean, 32.8; median, 37 years), the patients were again contacted, and adequate data were obtained on 176 surviving and 44 dead patients. Accordingly, the participation rate was 90%. Appendix 1shows the main characteristics of patients with “epilepsy only” and of all other patients, including those who died during follow-up. The mean age at death was 18.6 years (range, 1-41 years). There were 25 dropouts: seven women and 18 men. Seven were living abroad, eight refused cooperation, and 10 could not be traced. Their sociomedical backgrounds did not significantly differ from those of the participants. Of 176 traced and surviving patients who returned the mailed questionnaire with adequate information, 168 (95.5%) were interviewed face to face in 1992. One hundred (60%) surviving patients had no associated initial neurologic impairment or disability (i.e., mental retardation or cerebral palsy) and are the subjects for this study. Mental retardation was diagnosed at the initial examination or on the basis of further information gathered during follow-up. Of patients with “epilepsy only,” 68% were seizure free for at least the last 5 years of follow-up and no longer received medication; 9% were seizure free but receiv-
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APPENDIX 1. General characteristics of the patients with “epilepsy only” and the other patients from a population-based sample of 245 cases with childhoodonset epilepsy
Characteristic Mean age (SD) (yr)
Males/females (%) Seizures types (%) Partial Secondarily generalized Generalized Unclassified Etiology of seizures (%) Idiopathic Cryptogenic Symptomatic Not taking AEDs and free of seizures Taking AEDs Persistent seizures Free of seizures
Patients with “epilepsy only” (n = 100)
Other patients (n = 145)
36.5 (4.8)
35. 3 (4.6) (surviving patients included) 54/46
40/60 56 10 34
42 19 35 4
63 28 9 68
20 32 48 41
32 23 9
53 16 37
SD, standard deviation; AED, antiepileptic drug.
ing medication, and 23% were still having seizures and taking medication. Twelve patients received antiepileptic drug (AED) monotherapy, and 20 patients, polytherapy. Controls Two matched controls were chosen for each “epilepsy only” patient. To identify an unselected general population sample, we used a stratified random sampling from the nationwide computerized population registry. In that registry, every Finnish citizen or person resident in Finland has a unique personal identification number. Ninety-nine controls matched for sex, age, and place of birth (later referred to as “random controls”) were sampled for 99 patients with “epilepsy only” (one pair was lost by error). The random controls were interviewed by telephone. In a telephone interview, it is possible that a person does not readily reveal intimate and confidential personal data to an unknown interviewer. To allow access to sensitive personal information, a second control group was interviewed face to face. A large workplace (the TS-Group) was used where one author (M.J.) was the occupational physician. Applying computerized stratified random sampling for the whole employee registry (2,147 persons at the end of 1992), 100 “employee controls” matched for sex and age were chosen. To ensure one matched random and employee control for every patient, four matched persons for each patient in both control groups were identified. The controls were contacted in sequential Epilepsia, Vol. 38, No. 6, 1997
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order. If the first-to-contact control refused or was unable to participate, the next matched individual was contacted. Only five random controls and four employee controls refused to be interviewed. Four of the first-to-contact controls had epilepsy and were replaced by the next person in the list.
Methods Both the patients and employee controls were interviewed face to face by one author (M.J.) concerning their marital status, social functioning, selfassessed health, life satisfaction, and life management. The random controls were interviewed by telephone concerning their education, work, socioeconomic status, marital status, social functioning, and life satisfaction. The outcome variables were basic and vocational education, employability, social adjustment and interaction, and perceived life management. Basic and vocational education were defined by the classifications of the Central Statistical Office of Finland (34). The socioeconomic status was classified according to the national Classification of Socio-Economic Status (35). Appendix 2 shows the detailed classification of social competence. Definitions If patients had no initial associated neurologic impairment (mental retardation or cerebral palsy), they were considerd to have “epilepsy only.” A patient was considered mentally retarded if he or she had an IQ of
