Epilepsia, 48(5):907–912, 2007 Blackwell Publishing, Inc. C 2007 International League Against Epilepsy
Social Functioning and Psychological Well-Being of 347 Young Adults with Epilepsy Only—Population-Based, Controlled Study from Finland ∗ Anne Koponen, †Ullamaija Sepp¨al¨a, ‡Kai Eriksson, §Pirkko Nieminen, Antti Uutela, ¶Matti Sillanp¨aa¨ , #Leena Hyv¨arinen, and ∗∗ Reetta K¨alvi¨ainen ∗ Department of Public Health, University of Helsinki, Helsinki, Finland; †Department of Social Policy, University of Helsinki, Helsinki, Finland; ‡Pediatric Neurology Unit, Tampere University Hospital and Pediatric Research Centre, Medical School, University of Tampere, Tampere, Finland; §Department of Psychology, University of Tampere, Tampere, Finland; Department of Health Promotion and Disease Prevention, National Public Health Institute, Helsinki, Finland.; ¶Departments of Pediatric Neurology and Public Health, University of Turku, Turku, Finland; #Finnish Epilepsy Association, Helsinki, Finland; and ∗∗ Kuopio Epilepsy Center, Department of Neurology, University of Kuopio and Kuopio University Hospital, Kuopio, Finland
Summary: Purpose: To explore social functioning and psychological well-being in a population-based cohort of epilepsy patients compared to matched controls. Methods: A random sample of patients with epilepsy (N = 347) and a healthy control group (N = 430) matched for age, gender and domicile were identified through National Registry of Social Insurance Institution in Finland. The data were collected by postal questionnaire assessing various factors related to social and psychological well-being and were analyzed by using linear regression analysis to compare the study and control groups. Results: The age at onset of epilepsy was significantly associated with the level of further education and the level of seizure control with the employment status. The patients with epilepsy and lower level of basic education had also significantly lower
level of further education, employment, and fewer social relations. Some differences in psychological well-being were also seen in those with matriculation examination when compared to matched controls. Conclusions: In young adults with well-controlled epilepsy and successful basic education, social functioning is comparable with healthy peers. The importance of all social and educational support during the time of basic education may be crucial to favorable intellectual, functional, and social development later in life. Both professional and informal support is needed in adjunct to conventional treament of epilepsy, which is emphasized. Key Words: Epilepsy—Education—Employment— Social functioning—Social relations—Psychological wellbeing—Self-image.
Epilepsy is one of the most common chronic neurological conditions with prevalence of around 1% in populations of the developed countries (Hauser, 2001). Cognitive, psychiatric and behavioral disorders in patients with epilepsy, as a group, are increased (Aldenkamp et al., 2004), and some of these difficulties have been described also in patients with “epilepsy only,” i.e., without any evident other neurological or cognitive disabilities and with well-controlled epilepsy. More research has been done regarding psychiatric problems and problems in cognitive functions among persons with epilepsy than research about their everyday life, social adjustment, competence and functioning. However, patients with epilepsy also ex-
perience more problems in social functioning and psychological well-being than peers in general (Baker et al., 2005) and these are often considered to be even more handicapping than seizures themselves (Mirnics et al., 2001). The causes for these difficulties are multifactorial including the underlying etiology and neuropathology, EEG discharges and seizures, antiepileptic drugs (AED) and various other psychosocial factors (Kwan and Brodie, 2001). Several constructs have been used when examining social functioning. When using the concept of “social adjustment,” it is defined as the extent to which an individual’s role performance confirms the norms of his or her reference group (John, 2001). More broadly defined “social competence” means reasonable success with major developmental tasks expected for a person of a given age and gender in the context of his or her culture, society and time (Masten and Coatsworth, 1998) and in the most abstract level it is defined as effectiveness interaction, the result
Accepted November 18, 2006. Address correspondence and reprint requests to Dr. Reetta K¨alvi¨ainen, Department of Neurology, Kuopio University Hospital, PO Box 1777, 70211 Kuopio, Finland. E-mail:
[email protected] doi: 10.1111/j.1528-1167.2007.01017.x
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of organized behaviors that meet short and long-term developmental needs (Denham et al., 2003). In contrast, the definition “social” in concepts of social adjustment or social functioning has been broader and encompasses an individual’s ways of behaving as a member of society, in several contexts, with assessment focusing on variety of expected roles, relationships and responsibilities (John, 2001). The concept of social functioning we use in this article can be compared with the one of ICF classification. International Classification of Functioning, Disability and Health (WHO, 2001) is a recent model of functioning and disability formulated by the World Health Organization. In the model the concept of health is divided in two parts each containing two components. Part one relates to functioning (i.e., body functioning, body structures and impairment) and disability (i.e., activities, participation, activity limitations and participation restrictions). Part two relates to contextual factors (i.e., environmental factors, such as facilitators or barriers; and personal factors). In this study, we try to examine different components from both parts of the WHO model. In functioning and disability we study both body functions and structures (epilepsy related matters and personal functions). But we are especially interested in activities and participation (education, employment, financial situation, social relations). Also contextual factors such as family and friends are studied. The main problems of social functioning among patients with epilepsy include poor school performance and difficulties in finding employment, but they are also less likely to get married and more likely to be socially inactive regardless of the severity of the epilepsy (Sillanp¨aa¨ , 1983; Dodrill et al., 1984; Olsson and Campenhausen, 1993; Baker et al., 1997; Kokkonen et al., 1997). However, not all of these findings have been consistent. According to a study by Jacoby (1992), patients with well-controlled epilepsy were employed just like the general population, they were married slightly less often, but the number of those living alone corresponded again to the general population. Only a few patients felt that epilepsy restricted their social life, which was considered as active. Most of those studied had been seizure free at least during the past 2 years, which indicates that if seizures are well controlled epilepsy does not necessarily have a major impact on the individuals’ life. Psychological well-being has been linked to the frequency of seizures and other clinical variables, such as the age of onset, etiology and duration of epilepsy, and also to seizure type and antiepileptic drug treatment (Jacoby et al., 1996; Wirrell et al., 1997). However, the clinical and medical variables alone do not seem to explain all the problems in the psychological well-being of patients with epilepsy and their adjustment to the disease. It has been observed that the psychological well-being is better among those who believe that their life would Epilepsia, Vol. 48, No. 5, 2007
not be much different without epilepsy—in other words, those who do not feel a conflict in their self-image, as opposed to those with a conflicting self-image (Baker et al., 2005). Factors contributing negatively to psychological well-being include a sense of not being in control of one’s life (Amir et al., 1999), feeling stigmatized (Jacoby, 1994, Baker et al., 2000), having problems related to quality of life (Loring et al., 2004) such as comorbid depression and anxiety (Johnson et al., 2004) and problems connected with work, financial situation, and stress-inducing events in life (Hermann et al., 1990). The purpose of this study was to explore social functioning and well-being in a random, population based cohort of epilepsy patients aged 22–25 years compared to healthy, age- and gender-matched controls. Variables included in the study describing social functioning were performance in comprehensive school, matriculation examination and further education, finding employment, social relations (marital status, number of friends, parent’s concern) and hobbies as well as fifteen items measuring psychological well-being. In addition, the study aimed at identifying background factors promoting social functioning and psychological well-being (e.g., gender, age, age at onset of epilepsy, control of seizures, remission, mono/polytherapy, perceived general health, frequency of seizures, facing prejudice, bullying at school, main activity, and financial situation). METHODS The study group was extracted from a nationwide register kept by the Finnish National Social Insurance Institution (SII). SII is a governmental authority with in which all patients on long-term drug treatment must get registered in order to obtain the reimbursement for the drugs. Therefore, this sample can be regarded as very complete within given inclusion criteria. All patients born between years 1972–1974 and being entitled to reimbursement of AEDs according to a diagnosis of epilepsy or repetitive convulsive seizures and who did not live abroad nor were in institutional care were included in the original cohort (N = 1,427). Half of the patients in each 1-year age group were picked by random sampling to form the study group of 713 patients. An age- and gender-matched control group was chosen for the study group from healthy persons with same city, town or rural area of residence. None of the control group was entitled to reimbursement for medication on the basis of the following chronic illnesses: epilepsy, diabetes, serious psychoses, and other serious mental disorders, mental disability, arthritis, and chronic bronchial asthma. The analyzed data were collected by a postal questionnaire during the year 1997. Questions asked included both epilepsy (e.g., age at onset, use of AEDs, time from last seizure) and other health related items, level of education,
PSYCHOSOCIAL FUNCTIONING IN PATIENTS WITH EPILEPSY employment and marital status and number of questions concerning persons own perception about his/her social coping and psychological well-being. The response rate of adequately filled questionnaires was 58% (N = 414) of those with epilepsy and 60% (N = 430) in the control group. After excluding patients with mental retardation and other chronic neurological disorders, 347 young adults with epilepsy as the only neurological diagnosis were left to comprise the final study group of patients with “epilepsy only.” The statistical analyses were carried out by using the SPSS 8.0 program. The significance test used in the cross tabulation was Pearson’s chi-square test. The Mann– Whitney and Kruskall–Wallis tests were used as nonparametric tests, when the distribution did not comply with the normal distribution. In addition, the data were examined by using factor analysis (maximum likelihood method and varimax rotation) and stepwise linear regression analysis. RESULTS Sixty percent of those with epilepsy and 61% of the control group were women. Age at onset of epilepsy was under 7 years in 20%, 7–15 years in 38% and over 15 years in 42% of the patients. Epilepsy was well controlled in most of them; 49% were in over 2-year remission and only 14% had had seizures within the past month. Most (79%) of the patients were at the time of the study using AEDs; 65% were on monotherapy, 11% used two AEDs and 3% three or more AEDs. Almost all in the control group (87%) and most of the patients in the epilepsy group (79%, n.s.) assessed their general health as good or very good. Those with epilepsy did not have any other chronic illnesses more frequently than those in the control group; one-fourth in both groups reported some other chronic illnesses and 23% of those with epilepsy estimated that these other illness affected their everyday life as much or even more than epilepsy. Social functioning Half (49%) of the control group and over one-third (39%, n.s.) of the epilepsy group had passed the matriculation examination. Most (87% and 84%, respectively) of those with a matriculation examination had continued studies for college-level or higher degree. Among those with comprehensive school as basic education, only 27% in epilepsy group had a college-level degree, while the corresponding figure in the control group was significantly higher, 38% (p = 0.011). The majority of the patients with epilepsy had no difficulties in finding places for further education. However, their level of further education was lower than that in the control group, who attended more often the highest (university) level of education whereas the patients in the epilepsy group studied more often in vocational schools (Table 1). Persons in the control group assessed that their
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TABLE 1. Highest level of education by study group (p = 0.027) Education No education Folk high school/course/labor market training Vocational school College-level education Polytechnics University Other Total (N)
Epilepsy (%)
Control (%)
5.2 5.5
4.0 4.4
39.6 25.4 9.2 14.5 0.6 100 (346)
29.2 28.5 12.1 21.3 0.5 100 (428)
studies had gone very well or fairly well significantly more often than patients in the epilepsy group (85% vs. 73% respectively, p < 0.001). The age at onset of epilepsy was associated with the level of further education; 39% of those with onset of epilepsy less than 7 years, compared to 52% of those with epilepsy onset later than the age of 7 years, had studies at the level of college or above (p = 0.050). The unemployment rate among the epilepsy group was twice as high (23%) as in the control group (11%, p < 0.001). However, the difference in finding employment did not differ between epilepsy group and the control group in those with matriculation examination (Table 2). The seizure control predicted unemployment; those who were not seizure-free were significantly more likely to be unemployed (27%) than those with over 1-year seizure remission (19%) (p = 0.044). Interpersonal relations and psychological well-being The control group lived together with a partner more often than patients with epilepsy. However, this difference was significant only among those with lower basic (comprehensive) education (p = 0.003) but not among those matriculated. The age of epilepsy onset, the frequency of the seizures and the individually perceived health status did not associate with marital status. The number of those TABLE 2. Employment status by level of education in those with comprehensive school (p < 0.001) and matriculation examination (p = 0.059) as levels of basic education Level of basic education Comprehensive school Employed Student Unemployed Other Total (N) Matriculation examination Employed Student Unemployed Other Total (N)
Epilepsy (%)
Control (%)
Total (%)
45.3 12.3 26.9 15.6 100 (212)
63.9 13.2 13.7 9.1 100 (219)
54.8 12.8 20.2 12.4 100 (431)
32.6 45.9 17.0 4.4 100 (135)
36.5 47.9 8.1 7.6 100 (211)
35.0 47.1 11.6 6.4 100 (346)
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with only one or no friends was significantly higher among the patients with epilepsy (11%) than in the control group (5%) (p = 0.005). Those with epilepsy felt themselves lonelier than those in the control group, but the difference was again significant (p = 0.015) only among those with only comprehensive basic education. Also parents’ concerns about their life were significantly (p < 0.001) more prevalent in patients with epilepsy (22%) compared to control group (11%). The overall feeling of coping in life as well or better than the peers was significantly (p < 0.001) more often positive in the control group. When single variables describing psychological wellbeing were analyzed by using factor analysis three factors were formed. In the first factor, describing “low psychological well-being,” the following variables received the highest scores; dispirited, tired, irritable, overworked, depressed and nervous. The second factor named “selfimage of activity” the following variables got highest scores; ability to concentrate, indecisive, clumsy and active. Third factor, which was not used in further analysisincluded variables related to mood; loneliness and happiness (Table 3). Sum variables were formed on the basis of the factors and they were used as indicators of psychological wellbeing and self-image of activity. Reliability was measured with the Cronbach alpha coefficient and it was for psychological well-being indicator 0.86 and for the self-image indicator 0.66. Both sum variables were formed so that if information was missing in no more than two segments, the missing data was replaced by the average of the other variables, if information was missing from more than two segments, the missing data was chosen as the value of the sum variable. The strongest correlations with the psychological wellbeing were examined through linear regression analysis. The analysis comprised the following variables: sex, perTABLE 3. Variables related to psychological well-being and self-image
Dispirited Tired Irritable Overworked Depressed Nervous Tense Able to concentrate Independent Indecisive Active Calm Lonely Happy Clumsy Eigenvalues % of total variation
Factor 1
Factor 2
Factor 3
Communality
0.671 0.646 0.641 0.622 0.611 0.565 0.459 0.166 0.449 0.236 0.134 0.249 0.211 0.187 0.217 2.86 19
0.238 0.148 0.290
0.379 0.161 0.140
0.334 0.402 0.332 0.606 0.113 0.435 0.415 0.319
0.363 0.202 0.282
0.65 0.46 0.51 0.40 0.62 0.52 0.40 0.40
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0.320 0.352 1.81 12
0.215 0.151 0.217 0.711 0.428 0.374 1.37 09
0.27 0.24 0.16 0.56 0.32 0.31 6.04 40
TABLE 4. Variables explaining psychological well-being in the linear regression analysis in patients with epilepsy
Perceived health Bullying situations Making friends Seizures per year Constant Multiple R R2 Adjusted R2
B
SE
Beta
T
Sig.
−0.298 −0.413 −0.217 0.254 4.581 0.499 0.249 0.238
0.057 0.091 0.056 0.104 0.183
−0.279 −0.237 −0.202 0.129
−5.228 −4.547 −3.875 2.441 24.989
0.000 0.000 0.000 0.015 0.000
ceived health, frequency of seizures, easiness of making friends, facing prejudice, bullying at school, main activity, basic education, financial situation, and the existence of a permanent partner. The variables reflect health-related, social, intellectual, functional, and economic resources or lack them, which could be considered to be connected with psychological well-being. From the variables mentioned above, perceived poor health, bullying at school, seizures not in remission and difficulties in making friends increased the likelihood of mental symptoms (Table 4). Linear regression analysis for the strongest correlations to self-image of activity comprised the same variables as in the analysis for mental symptoms described in previous paragraph; the variables with the strongest links to self-image included perceived health, bullying at school, main activity, and easiness of making friends. Thus, the self-image of activity was supported by good health, work or studies, not being bullied or being a bully in comprehensive school, and the easiness of making friends (Table 5). DISCUSSION In this population-based study the differences between young patients with epilepsy only and the matched healthy control group in the level of further education, employment, and social relations and coping were significant mainly in the group of those with low level of basic education. The differences in psychological well-being however, were evident also in those with matriculation TABLE 5. Variables explaining self-image in the linear regression analysis in patients with epilepsy
Perceived health In bullying situations Main activity Making friends Constant Multiple R R2 Adjusted R2
B
SE
Beta
T
Sig.
−0.318 −0.180 0.197 −0.109 4.609 0.456 0.208 0.197
0.050 0.080 0.082 0.049 0.133
−0.345 −0.120 −0.129 0.117
−6.339 −2.242 −2.395 −2.195 34.525
0.000 0.026 0.017 0.029 0.000
PSYCHOSOCIAL FUNCTIONING IN PATIENTS WITH EPILEPSY examination when compared to healthy, matched controls, i.e., there may be factors related to epilepsy that significantly impair psychological well-being in patients with epilepsy only, i.e., without other neurological comorbidity. It is possible, however, that all confounding factors could not be controlled adequately, e.g., there might have been more patients without seizure freedom in the epilepsy group with comprehensive schooling compared to the group with matriculation examination. However, no statistically significant difference could be found between these two groups in the current seizure frequency or perceived level of health even though there were significantly more patients who were on AED polytherapy among those with basic education compared to those with matriculation examination. The study did not include information of the seizure frequency during the school years but the importance of seizure freedom should be emphasized because it can be regarded as pathway toward social competence. Early (under 7 years) age at onset of epilepsy was significantly associated with lower level of basic education indicating the possible role of epilepsy, seizures and AEDs on the developmental issues in early childhood. This was reflected also in the number of patients with early onset of epilepsy and the need for special education and difficulties in foreign languages, reading, and writing compared to those with epilepsy onset later in the life. Half of those with early onset of epilepsy had also been bullied at school, which was twice as frequent as in those in the other groups, including the control group. Early onset of epilepsy seemed to be a risk factor for successful social development and learning difficulties and, e.g., bullying may lead into a vicious circle of deteriorating self-esteem and social exclusion. Successful growing into independence is associated with good social coping. In the control group, level of basic education did not associate with psychological wellbeing and self-image of activity. Among the patients with epilepsy, those with matriculation examination assessed their ability to lead an independent life significantly higher than those who had lower basic education. Young adults should be able to form close relationships with their peers and to break away from their parents, which seems to be more difficult for young adults with epilepsy than for their healthy peers. This may cause a denial for need of support and may explain why only 46% of those with epilepsy completely agreed with the statement that support from relatives and friends is important, while 81% of the control group did so (p < 0.001). Young patients with epilepsy felt also more often than their healthy peers that their parents interfered too much in their lives, but this difference was significant only in the group of those with comprehensive basic education. This interfering by parents and overprotection signals that the person cannot cope by him/herself and this may be harmful for self-esteem. The importance of positive experiences during basic education was em-
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phasized by the fact that bullying seemed to affect the psychological well-being in long-term. In conclusion, even when considering the risk of bias arising from study methodology (e.g., response rates, which may have implications for the results resulting from lower response rates in patients with more severe epilepsies), the results seem to indicate that when epilepsy is well controlled and basic education has been successful, young patients with epilepsy function socially as well as their healthy peers. All available support must, therefore, be provided for children and adolescents with epilepsy during the time of basic education because the success at this stage of life seems to predict favorable later intellectual, functional, and social development. Both professional and informal support is needed in adjunct to conventional treament of epilepsy and health professionals should be aware of the need for this (Suurmeijer et al., 2001). The importance for being observant for signs of stigmatization in adolescents with epilepsy was also underlined in a recent study from Sweden (R¨aty et al., 2003) and positive and negative affectivity and self-efficacy being important predictors of perceived emotional adjustment, psychosocial adjustment and quality of life in patients with epilepsy in a Norwegian study (Gramstad et al., 2001) imply that in future research these issues should be given a high priority. Acknowledgments: The study was funded by the Finnish Epilepsy Association and the RAY (Finnish Slot Machine Association).
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