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Self-esteem and sense of coherence in young people with uncomplicated epilepsy: A 5-year follow-up
Epilepsy & Behavior 17 (2010) 520–524
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Self-esteem and sense of coherence in young people with uncomplicated epilepsy: A 5-year follow-up Helena Gauffin a,b,*, Anne-Marie Landtblom a,b, Lena Räty c a
Division of Neurology, Medical Faculty/IKE, Linköping University, Linköping, Sweden Neurology Clinic, University Hospital, Linköping, Sweden c Department of Nursing, Faculty of Life and Social Sciences, Karlstad University, Karlstad, Sweden b
a r t i c l e
i n f o
Article history: Received 11 November 2009 Revised 27 January 2010 Accepted 28 January 2010 Available online 15 March 2010 Keywords: Epilepsy Seizure-frequency Self-esteem Sense of coherence Young adults Psychosocial aspects
a b s t r a c t Objective: It is not clear how the psychosocial well-being of young people with epilepsy is affected by growing up with the condition. We studied self-esteem and sense of coherence in a group of young adults with epilepsy and compared the results with those obtained 5 years earlier. Methods: The participants (n = 97) answered questionnaires regarding self-esteem, sense of coherence, and medical characteristics. Results: Self-esteem and sense of coherence both decreased during the 5-year study period. Self-esteem was correlated to epilepsy-related variables. Participants who were seizure free scored higher on sense of coherence, but there was no association between seizure frequency and sense of coherence among participants who still experienced seizures. Conclusion: We found that there was a decline in both sense of coherence and self-esteem over time for young adults with epilepsy. Growing up with epilepsy can lead to impairment of sense of coherence. Sense of coherence does not significantly correlate with epilepsy-related factors, but mirrors the phenomenon of epilepsy. Self-esteem is associated with such epilepsy-related factors as seizure frequency. Ó 2010 Elsevier Inc. All rights reserved.
1. Introduction The development of a stable ego identity is a central process in the transition from childhood to adulthood, the time when a person’s identity and self-esteem are formed. Self-esteem is the most important part of the ego, and has been found to be the most important factor contributing to psychosocial well-being [1]. Selfesteem is determined by (1) what we think of ourselves, as a reflection of what the people we care about think of us; (2) how we evaluate ourselves in comparison to other people; and (3) our ability to reach a positive outcome concerning issues that are important to us. Maintaining or enhancing self-esteem has been emphasized as one of the most important human motives, and low self-esteem has been considered an important symptom of depression [1]. Regarding self-esteem in relation to epilepsy, it has been shown that young people who live with epilepsy have a significantly higher incidence of depression relating to interpersonal problems, greater social anxiety, and more obsessive symptoms than adolescents without epilepsy [2]. However, there are other studies that do not support the notion that epilepsy correlates to lower self-
* Corresponding author. Address: Neurologmottagningen, Universitetssjukhuset i Linköping, S-581 85 Linköping, Sweden. Fax: +46 13224438. E-mail address: helena.gauffi[email protected] (H. Gauffin). 1525-5050/$ - see front matter Ó 2010 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2010.01.167
esteem [3]. Lee et al. [4] reported that epilepsy-related variables have little impact on overall self-esteem in adolescence. In that study, neither seizure frequency nor number of failed therapies could predict poorer self-esteem. Another factor that has been found to be closely related to psychosocial well-being is a person’s sense of coherence [5]. This was described by Antonovsky, who searched for the reason for health rather than the cause of disease [6]. Sense of coherence was defined as the ability to perceive a stressor as comprehensible, manageable, and meaningful. Degree of health was seen as a point on the axis between ill health and total health. The capacity to use available resources and comprehend the situation was called sense of coherence. Studies have shown that people with strong sense of coherence handle stress better and are healthier than people with weak sense of coherence [7,8]. High sense of coherence predicts a positive outcome in the long-term perspective. According to Antonovsky, sense of coherence is stable by the end of early adulthood and thereafter fluctuates only slightly depending on patterns of life experience [9]. In 1999, Raty et al. studied the medical and psychological aspects of adolescents with uncomplicated epilepsy and compared the results with those for controls [10,11]. They found no differences between the participants and the controls with respect to psychosocial factors, but greater severity of epilepsy was associated
H. Gauffin et al. / Epilepsy & Behavior 17 (2010) 520–524
with low self-esteem and low sense of coherence. However, previous research has provided diverging results regarding how the psychosocial well-being of adolescents with epilepsy is affected by growing up with the condition [12–18]. This study is part of a 5-year follow-up study that reports selfesteem and sense of coherence in an epilepsy group and compares baseline data with data obtained 5 years earlier to identify changes over time. The relationship between epilepsy and psychosocial aspects is also studied. One aim of this study was to compare the self-esteem and sense of coherence of young adults with uncomplicated epilepsy with the situation 5 years earlier. Another aim was to describe the relationship between epilepsy-specific variables and their psychosocial markers.
2. Methods 2.1. Subjects In 1999, all adolescents aged 13–22 who were registered with uncomplicated epilepsy at four Swedish hospitals were invited to participate in the study, and 82% accepted (n = 151). At the 5-year follow-up in 2004, the participants were young adults aged 18–27. In 1999, the diagnosis of epilepsy was defined as the occurrence of at least two unprovoked epileptic seizures. Inclusion criteria were: at least one epileptic seizure during the preceding year and/or antiepileptic drug (AED) treatment. Uncomplicated epilepsy was defined as epilepsy without associated neurological impairment (mental retardation or cerebral palsy). Patients with epilepsy classified as benign childhood epilepsy with centrotemporal spikes were excluded. Intractable epilepsy was defined as seizures every month despite AED treatment. Recovery was defined as freedom from seizures, no use of AEDs, and no or scarce contact with a neurologist.
521
instruments used in our study were developed to be comparable. Cronbach’s a in the present study was 0.97. The questionnaire comprises 67 items intended to measure physical, psychological, and social self-esteem on five subscales: physical index, skills, psychological well-being, relationship with family, and relationship with others. The 4-point response scale ranges from –2 to +2 with the alternatives ‘‘exactly like me”, ”fairly like me”, ‘‘not exactly like me”, and ‘‘not at all like me”. Total scores range from –144 to +144. Total scores from 1 to 144 reflect positive self-esteem, and higher scores reflect higher self-esteem. The mean for healthy controls in adolescence and young adulthood is 68.8 [10,20]. 2.2.3. Seizure-outcome measures To describe how well the patient’s epilepsy was controlled, we used a 4-degree scale. In the original study in 1999, a 3-degree scale in accordance with Eriksson [23] was used. To be more explicit, a fourth group (seizures occurring more often than once a week) was added: (1) good control: no seizures during the past year; (2) partial control: one or more seizures during the past year but not more than one per month; (3) poor control: more than one seizure per month; (4) very poor control: more than one seizure per week. 2.3. Procedure The persons were identified and invited to participate by mail. Those who accepted gave their written consent. The invitation included information about the study and questionnaires regarding medical and psychosocial aspects of epilepsy. Patients who did not return their questionnaires within 2 weeks were contacted by phone or by mail if phone calls were not answered. The physician also collected data from the patients’ medical records. Data were collected about seizure frequency, classification of epilepsy, treatment with AEDs, and side effects. Results on medical aspects and quality of life were reported previously [24].
2.2. Instruments 2.4. Statistics 2.2.1. Sense of coherence questionnaire The original version of the Sense of Coherence Questionnaire (SOC) comprises 29 items distributed into three categories: comprehensibility (understanding a stimulus as predictable and explicable), manageability (there are resources available to meet the demand), and meaningfulness (demands or challenges worthy of emotional investment). In this study, the shorter 13-item version was used. This version was also used in the first study. SOC-13 contains 13 items that are rated on a 7-point scale. Total scores range from 13 to 91 points. Ratings are summed and higher scores reflect higher coherence. The SOC has been shown to have adequate reliability and validity. Cronbach’s a was 0.85 in the study in 1999 and 0.88 in the present study. Mean SOC-13 scores in studies on different populations range from 35.39 to 77.60 [19]. The mean for healthy controls is 65.04 for men and 65.02 for women [20].The mean for healthy controls in adolescence and young adulthood is 63.73 [10]. 2.2.2. As I See Myself Questionnaire In 1999, an instrument developed for adolescents, I Think I Am, was used to measure self-esteem [21]. This well-used Swedish instrument was developed by deriving items from such well-established instruments as the Pier–Harris Self-Concept Scale and Rosenberg’s Self-Image Scale [21,22]. Validity and reliability as measured by internal consistency were shown to be adequate using Cronbach’s a (0.71–0.82). The concordant instrument for adults, As I See Myself, replaced I Think I Am in 2004. These two
For statistical analyses, the Statistical Package for Social Sciences, Version 15.0, was used. Frequencies were calculated and cross-tabulations were carried out. Descriptions were presented as numbers and percentages in variables at nominal level. Pearson’s v2 test was used for significance tests on variables on the nominal level. For comparisons between groups, the Mann–Whitney U test was used. For comparisons of dependent factors over time, Wilcoxon’s signed ranks test was used. P values less than 0.05 were considered significant. 2.5. Ethics The Linköping and Örebro regional research committees approved this study. Those who participated gave their verbal and/ or written consent. Written and verbal information was provided to all medical staff. 3. Results Of the 151 subjects, 146 were traceable and 97 returned all questionnaires. More women than men returned the questionnaires. Analyses revealed no differences between the participants and the dropouts with respect to sex, age, medical epilepsy-related factors, and measured sense of coherence or self-esteem. The participants were all between 18 and 27 years of age. Mean age was 23.5 years, and median age, 24 years.
H. Gauffin et al. / Epilepsy & Behavior 17 (2010) 520–524
All participants had had epilepsy for at least 5 years, and 60.5% had been diagnosed for more than 10 years. At the end of the follow-up period, 67% reported being seizure free with or without AEDs. Twenty-one patients (21.6%) considered themselves to have recovered from epilepsy. The other participants (n = 76) still suffered from epilepsy and all but one of those used AEDs. Most subjects had generalized forms of epilepsy (46.4%), and 32.0% had localization-related epilepsy (Table 1). Of the participants who still had epilepsy, 75% were on monotherapy and 25% on polytherapy (Table 2). Drug-related side effects were experienced by 82% of participants taking AEDs. The most common side effect reported was tiredness.
Table 2 AED treatment 2004. AED
Number (%)
None Carbamazepine Valproic acid New-generation AEDsa Monotherapy Ditherapy Polytherapy
22 (22.7) 9 (9.3) 26 (26.8) 21 (21.6) 15 (15.5) 4 (4.1)
a New-generation AEDs included lamotrigine, levetiracetam, topiramate, and gabapentin.
Table 3 Values for self esteem and sense of coherence for young people with epilepsy in 1999, 2004 and general population.
3.1. Sense of coherence Between 1999 and 2004, sense of coherence decreased (P = 0.03) for the whole group (Table 3). Participants who were seizure free scored higher on the SOC-13 (P = 0.04) than those who still had seizures, but there was no significant correlation between seizure frequency and sense of coherence among participants who still experienced seizures (Fig. 2). Participants with intractable seizures did not score significantly lower than other participants. Side effects did not cause significantly lower sense of coherence. There were no differences between men and women and no correlation with classification of epilepsy. Participants on di- or polytherapy had significantly lower SOC-13 scores at the 5-year follow-up (P = 0.006) compared with participants on monotherapy, whose scores remained unchanged. Among the participants who had higher sense of coherence in 2004 than in 1999, there was no correlation with changes in seizure frequency. 3.2. Self-esteem Since the first measurement 5 years earlier, self-esteem had decreased (P < 0.05) (Table 3). There was a correlation between seizure frequency and self-esteem: higher seizure frequency correlated with lower self-esteem (P < 0.05) (Fig. 1). Intractable epilepsy, defined as seizures at least every month, was correlated with the lowest self-esteem scores (P < 0.05). In those who experienced side effects, there was a decline in self-esteem (P < 0.05). Participants who had recovered from epilepsy had better self-esteem than those who still experienced seizures (P < 0.001). One group increased their self-esteem scores during the 5-year period and this group had better seizure control than the other participants (P < 0.05). There were no differences between men and women and no correlation with classification of epilepsy.
1999
Self esteem Sense of coherence
2004
General population
M
SD
M
SD
M
SD
63,4a 64,05a
32,29a 13,15a
54,67 61,11
41,19 13,22
68,82a 65,04b
30,98a 10,39b
M=Means SD=Standard deviation a Ref. (10). b Ref. (20).
100
AISM 2004
522
50
0
50
Good
Partial
Poor
Very poor
Control of seizures Fig. 1. The relationship between self-esteem and control of seizures in young adults with epilepsy.
Table 1 Classification of epilepsy in 2004 according to ILAE: young patients with uncomplicated epilepsy. Type of epilepsy
Frequency, n
Localization-related symptomatic epilepsy Localization-related cryptogenic epilepsy Generalized idiopathic childhood absence epilepsy Generalized idiopathic juvenile absence epilepsy Generalized idiopathic juvenile myoclonic epilepsy Generalized idiopathic other generalized idiopathic epilepsies not defined Generalized idiopathic epilepsy with seizures precipitated by specific modes of action Generalized symptomatic epilepsy, nonspecific etiology Recovered from epilepsy
19 12 2 3 7 31
Total
97
1 1 21
4. Discussion The study by Raty et al. [10] involving the same participants with uncomplicated epilepsy in 1999 (13- to 22-year-olds) reported no significant difference in self-esteem and sense of coherence compared with healthy controls. Older youth experienced poorer self-esteem in both the epilepsy and control groups. In the present study, there was no comparison with controls, but studies in the general population do indicate that sense of coherence improves with age [19,25]. Our results show a decline in sense of coherence, indicating that sense of coherence decreased because of the epilepsy, but the decline is set in early adulthood and not during adolescence. The difficulties and barriers at this time of life are more apparent on the pathway to achieving adult goals such as employment, driver’s license, a partner, and a resi-
H. Gauffin et al. / Epilepsy & Behavior 17 (2010) 520–524
80
SOC 2004
70
60
50
40
30 Good
Partial
Poor
Very poor
Control of seizures Fig. 2. The relationship between sense of coherence and control of seizures in young adults with epilepsy.
dence. Parental overprotection may also delay the acquisition of independence for young people with epilepsy [26,27] and may be one explanation of why the decline in sense of coherence is set in early adulthood and not during adolescence. The dropout rate was quite high especially among men. More women than men had recovered from epilepsy, indicating that men who no longer suffered from epilepsy had a diminished interest in participating in the follow-up. The questionnaires were quite time consuming, which may have caused persons who had recovered from epilepsy to be not as interested in participating as before. Because these participants had uncomplicated epilepsy we do not believe that cognitive impairment prohibited participation. Participants with severe epilepsy might have been more motivated to participate. There are several studies on various somatic diseases that support the relationship between sense of coherence and quality of life [28–31]: the stronger the sense of coherence, the better the quality of life. In the present study, sense of coherence was not significantly associated with epilepsy-related factors such as seizure frequency, AED side effects, and number of AEDs. On the other hand, sense of coherence could be a distinct measure for epilepsy as a phenomenon. This is a social label, which patients with epilepsy can experience regardless of the present situation. Having epilepsy during adolescence could influence sense of coherence negatively and therefore reduce the person’s ability to cope with stressful events in the future. It causes vulnerability in difficult life situations. A recent study describes the feeling of shame as a central emotion in the understanding of what it is like to have epilepsy [32].Other negative feelings described were fear, sorrow, and guilt, which all can contribute to a negative picture of the self. The decline in self-esteem among the participants in the present study is more prominent than the decline in sense of coherence. Self-esteem, unlike sense of coherence, seems to be significantly correlated with present epilepsy-related variables. The group with intractable seizures scored very low on self-esteem, but the difference with respect to sense of coherence was not significant. Side effects and number of AEDs are also associated with lower self-esteem. A previous study on patients with intractable partial epilepsy demonstrated that, apart from other psychological values, seizure severity was the most important predictor of self-esteem [33].
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Perucca et al. [34] recently studied the adverse effects of AEDs in 200 subjects with epilepsy. They suggest that all aspects of medication toxicity have an impact on subjective health status, but the effect within the cognition/coordination area seems to be the most deleterious. In this study, we found that side effects of AEDs were associated with low self-esteem. Health outcome studies in epilepsy indicate that side effects of AEDs have the strongest impact on subjective health [34,35]. Adverse effects of AEDs have a negative impact on health-related quality of life regardless of seizure frequency [36]. Health-related quality of life (HRQOL) has rarely been explicitly defined. Many authors use this concept, but provide no clear definition. Meador et al. wrote that HRQOL measures treatment outcome by considering more than seizure reduction or freedom [37]. The outcome must be balanced against the occurrence of neurotoxicity and other cognitive and behavioral effects. In this study, we chose to regard seizure frequency as a measure of illness severity, even though number of AEDs and their side effects, as well as psychosocial aspects, also reflect illness severity. Birbeck et al. report that improvement of HRQOL was evident only among patients who achieved seizure freedom [38]. Seizure reduction did not have the same positive impact on HRQOL. However, views differ about which factor is most important for illness severity and how this should be measured. Cramer et al. [39] argue that patients perceive a decrease in their overall health when they experience a seizure, but this also applies to side effects from AEDs. Patients who have been seizure free for a while regard seizure freedom as the most important factor, whereas patients who have frequent seizures are more concerned about side effects. This could mean that illness severity cannot be measured in the same way for all patients. Different factors are important to different individuals. The proposal that seizure frequency is the most important factor for health perception has also been contradicted by Pais-Ribeiro et al. [40], who state that optimistic orientation is the most important factor. Patients’ conceptions of epilepsy are more often of a psychosocial than of a medical nature. The psychosocial conceptions are often negative with feelings of fear and shame [32]. Such feelings can contribute to negative self-esteem and possibly to psychiatric comorbidity. Several studies have shown that psychiatric comorbidity, like depression and anxiety, may be the strongest predictor of health-related quality of life for people with epilepsy [41–43].
5. Conclusion Sense of coherence is the extent to which individuals are able to cope with severe crises and see a meaning in their lives. Growing up with epilepsy can lead to impairment of the sense of coherence and, therefore, a poorer ability to cope with difficult situations in life. In this study, we found that there was a decline in both sense of coherence and self-esteem over time for young adults with uncomplicated epilepsy. Our findings indicate that sense of coherence does not significantly correlate with epilepsy-related factors, but mirrors epilepsy as a phenomenon. We have shown that self-esteem is associated with epilepsy-related factors, among which we regard seizure frequency as the most important. Side effects and number of AEDs also lead to a decline in self-esteem. References [1] Winter DG. Personality, analysis and interpretations of lives. New York: McGraw–Hill; 1996. [2] Baker GA, Spector S, McGrath Y, Soteriou H. Impact of epilepsy in adolescence: a UK controlled study. Epilepsy Behav 2005;6:556–62. [3] Reeve DK, Lincoln NB. Coping with the challenge of transition in older adolescents with epilepsy. Seizure 2002;11:33–9.
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[4] Lee A, Hamiwka LD, Sherman EM, Wirrell EC. Self-concept in adolescents with epilepsy: biological and social correlates. Pediatr Neurol 2008;38:335–9. [5] Antonovsky A. Unravelling the mystery of health: how people manage stress and stay well. San Fransisco: Jossy-Bass; 1987. [6] Lindstrom B, Eriksson M. The salutogenic approach to the making of HiAP/ healthy public policy: illustrated by a case study. Promot Educ 2009;16:17–28. [7] Adams TB, Bezner JR, Drabbs ME, Zambarano RJ, Steinhardt MA. Conceptualization and measurement of the spiritual and psychological dimensions of wellness in a college population. J Am Coll Health 2000;48:165–73. [8] Skirka N. The relationship of hardiness, sense of coherence, sports participation, and gender to perceived stress and psychological symptoms among college students. J Sports Med Phys Fitness 2000;40:63–70. [9] Antonovsky A. The structure and properties of the sense of coherence scale. Soc Sci Med 1993;36:725–33. [10] Raty LK, Wilde Larsson BM, Soderfeldt BA. Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls. J Adolesc Health 2003;33:252–8. [11] Raty LK, Soderfeldt BA, Larsson G, Wilde Larsson BM. The relationship between illness severity, sociodemographic factors, general self-concept, and illnessspecific attitude in Swedish adolescents with epilepsy. Seizure 2004;13: 375–82. [12] Stavem K, Loge JH, Kaasa S. Health status of people with epilepsy compared with a general reference population. Epilepsia 2000;41:85–90. [13] Jacoby A. Epilepsy and the quality of everyday life: findings from a study of people with well-controlled epilepsy. Soc Sci Med 1992;34:657–66. [14] Jacoby A, Thapar A. The contribution of seizures to psychosocial ill-health. Epilepsy Behav 2009;15(Suppl. 1):S41–5. [15] Wiebe S, Bellhouse DR, Fallahay C, Eliasziw M. Burden of epilepsy: the Ontario Health Survey. Can J Neurol Sci 1999;26:263–70. [16] Santhouse J, Carrier C, Arya S, Fowler H, Duncan S. A comparison of selfreported quality of life between patients with epilepsy and neurocardiogenic syncope. Epilepsia 2007;48:1019–22. [17] Kobau R, Zahran H, Grant D, Thurman DJ, Price PH, Zack MM. Prevalence of active epilepsy and health-related quality of life among adults with selfreported epilepsy in California: California Health Interview Survey, 2003. Epilepsia 2007;48:1904–13. [18] Strine TW, Kobau R, Chapman DP, Thurman DJ, Price P, Balluz LS. Psychological distress, comorbidities, and health behaviors among U.S. adults with seizures: results from the 2002 National Health Interview Survey. Epilepsia 2005;46:1133–9. [19] Eriksson M, Lindstrom B. Validity of Antonovsky’s sense of coherence scale: a systematic review. J Epidemiol Community Health 2005;59:460–6. [20] Larsson G, Kallenberg KO. Sense of coherence, socioeconomic conditions and health. Eur J Public Health 1996;6:175–80. [21] Ouvinen-Birgerstam P. Jag tycker jag är [I Think I Am manual]. Stockholm: Psykologiförlaget; 1999 [in Swedish]. [22] Wylie R. The self-concept: theory and research on selected topics. vol. 2. revd ed. Lincoln: Univ. of Nebraska Press; 1979. [23] Eriksson KJ, Koivikko MJ. Prevalence, classification and severity of epilepsy and epileptic syndromes in children. Epilepsia 1997;38:1275–82.
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Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Self-esteem and sense of coherence in young people with uncomplicated epilepsy: A 5-year follow-up Helena Gauffin a,b,*, Anne-Marie Landtblom a,b, Lena Räty c a
Division of Neurology, Medical Faculty/IKE, Linköping University, Linköping, Sweden Neurology Clinic, University Hospital, Linköping, Sweden c Department of Nursing, Faculty of Life and Social Sciences, Karlstad University, Karlstad, Sweden b
a r t i c l e
i n f o
Article history: Received 11 November 2009 Revised 27 January 2010 Accepted 28 January 2010 Available online 15 March 2010 Keywords: Epilepsy Seizure-frequency Self-esteem Sense of coherence Young adults Psychosocial aspects
a b s t r a c t Objective: It is not clear how the psychosocial well-being of young people with epilepsy is affected by growing up with the condition. We studied self-esteem and sense of coherence in a group of young adults with epilepsy and compared the results with those obtained 5 years earlier. Methods: The participants (n = 97) answered questionnaires regarding self-esteem, sense of coherence, and medical characteristics. Results: Self-esteem and sense of coherence both decreased during the 5-year study period. Self-esteem was correlated to epilepsy-related variables. Participants who were seizure free scored higher on sense of coherence, but there was no association between seizure frequency and sense of coherence among participants who still experienced seizures. Conclusion: We found that there was a decline in both sense of coherence and self-esteem over time for young adults with epilepsy. Growing up with epilepsy can lead to impairment of sense of coherence. Sense of coherence does not significantly correlate with epilepsy-related factors, but mirrors the phenomenon of epilepsy. Self-esteem is associated with such epilepsy-related factors as seizure frequency. Ó 2010 Elsevier Inc. All rights reserved.
1. Introduction The development of a stable ego identity is a central process in the transition from childhood to adulthood, the time when a person’s identity and self-esteem are formed. Self-esteem is the most important part of the ego, and has been found to be the most important factor contributing to psychosocial well-being [1]. Selfesteem is determined by (1) what we think of ourselves, as a reflection of what the people we care about think of us; (2) how we evaluate ourselves in comparison to other people; and (3) our ability to reach a positive outcome concerning issues that are important to us. Maintaining or enhancing self-esteem has been emphasized as one of the most important human motives, and low self-esteem has been considered an important symptom of depression [1]. Regarding self-esteem in relation to epilepsy, it has been shown that young people who live with epilepsy have a significantly higher incidence of depression relating to interpersonal problems, greater social anxiety, and more obsessive symptoms than adolescents without epilepsy [2]. However, there are other studies that do not support the notion that epilepsy correlates to lower self-
* Corresponding author. Address: Neurologmottagningen, Universitetssjukhuset i Linköping, S-581 85 Linköping, Sweden. Fax: +46 13224438. E-mail address: helena.gauffi[email protected] (H. Gauffin). 1525-5050/$ - see front matter Ó 2010 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2010.01.167
esteem [3]. Lee et al. [4] reported that epilepsy-related variables have little impact on overall self-esteem in adolescence. In that study, neither seizure frequency nor number of failed therapies could predict poorer self-esteem. Another factor that has been found to be closely related to psychosocial well-being is a person’s sense of coherence [5]. This was described by Antonovsky, who searched for the reason for health rather than the cause of disease [6]. Sense of coherence was defined as the ability to perceive a stressor as comprehensible, manageable, and meaningful. Degree of health was seen as a point on the axis between ill health and total health. The capacity to use available resources and comprehend the situation was called sense of coherence. Studies have shown that people with strong sense of coherence handle stress better and are healthier than people with weak sense of coherence [7,8]. High sense of coherence predicts a positive outcome in the long-term perspective. According to Antonovsky, sense of coherence is stable by the end of early adulthood and thereafter fluctuates only slightly depending on patterns of life experience [9]. In 1999, Raty et al. studied the medical and psychological aspects of adolescents with uncomplicated epilepsy and compared the results with those for controls [10,11]. They found no differences between the participants and the controls with respect to psychosocial factors, but greater severity of epilepsy was associated
H. Gauffin et al. / Epilepsy & Behavior 17 (2010) 520–524
with low self-esteem and low sense of coherence. However, previous research has provided diverging results regarding how the psychosocial well-being of adolescents with epilepsy is affected by growing up with the condition [12–18]. This study is part of a 5-year follow-up study that reports selfesteem and sense of coherence in an epilepsy group and compares baseline data with data obtained 5 years earlier to identify changes over time. The relationship between epilepsy and psychosocial aspects is also studied. One aim of this study was to compare the self-esteem and sense of coherence of young adults with uncomplicated epilepsy with the situation 5 years earlier. Another aim was to describe the relationship between epilepsy-specific variables and their psychosocial markers.
2. Methods 2.1. Subjects In 1999, all adolescents aged 13–22 who were registered with uncomplicated epilepsy at four Swedish hospitals were invited to participate in the study, and 82% accepted (n = 151). At the 5-year follow-up in 2004, the participants were young adults aged 18–27. In 1999, the diagnosis of epilepsy was defined as the occurrence of at least two unprovoked epileptic seizures. Inclusion criteria were: at least one epileptic seizure during the preceding year and/or antiepileptic drug (AED) treatment. Uncomplicated epilepsy was defined as epilepsy without associated neurological impairment (mental retardation or cerebral palsy). Patients with epilepsy classified as benign childhood epilepsy with centrotemporal spikes were excluded. Intractable epilepsy was defined as seizures every month despite AED treatment. Recovery was defined as freedom from seizures, no use of AEDs, and no or scarce contact with a neurologist.
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instruments used in our study were developed to be comparable. Cronbach’s a in the present study was 0.97. The questionnaire comprises 67 items intended to measure physical, psychological, and social self-esteem on five subscales: physical index, skills, psychological well-being, relationship with family, and relationship with others. The 4-point response scale ranges from –2 to +2 with the alternatives ‘‘exactly like me”, ”fairly like me”, ‘‘not exactly like me”, and ‘‘not at all like me”. Total scores range from –144 to +144. Total scores from 1 to 144 reflect positive self-esteem, and higher scores reflect higher self-esteem. The mean for healthy controls in adolescence and young adulthood is 68.8 [10,20]. 2.2.3. Seizure-outcome measures To describe how well the patient’s epilepsy was controlled, we used a 4-degree scale. In the original study in 1999, a 3-degree scale in accordance with Eriksson [23] was used. To be more explicit, a fourth group (seizures occurring more often than once a week) was added: (1) good control: no seizures during the past year; (2) partial control: one or more seizures during the past year but not more than one per month; (3) poor control: more than one seizure per month; (4) very poor control: more than one seizure per week. 2.3. Procedure The persons were identified and invited to participate by mail. Those who accepted gave their written consent. The invitation included information about the study and questionnaires regarding medical and psychosocial aspects of epilepsy. Patients who did not return their questionnaires within 2 weeks were contacted by phone or by mail if phone calls were not answered. The physician also collected data from the patients’ medical records. Data were collected about seizure frequency, classification of epilepsy, treatment with AEDs, and side effects. Results on medical aspects and quality of life were reported previously [24].
2.2. Instruments 2.4. Statistics 2.2.1. Sense of coherence questionnaire The original version of the Sense of Coherence Questionnaire (SOC) comprises 29 items distributed into three categories: comprehensibility (understanding a stimulus as predictable and explicable), manageability (there are resources available to meet the demand), and meaningfulness (demands or challenges worthy of emotional investment). In this study, the shorter 13-item version was used. This version was also used in the first study. SOC-13 contains 13 items that are rated on a 7-point scale. Total scores range from 13 to 91 points. Ratings are summed and higher scores reflect higher coherence. The SOC has been shown to have adequate reliability and validity. Cronbach’s a was 0.85 in the study in 1999 and 0.88 in the present study. Mean SOC-13 scores in studies on different populations range from 35.39 to 77.60 [19]. The mean for healthy controls is 65.04 for men and 65.02 for women [20].The mean for healthy controls in adolescence and young adulthood is 63.73 [10]. 2.2.2. As I See Myself Questionnaire In 1999, an instrument developed for adolescents, I Think I Am, was used to measure self-esteem [21]. This well-used Swedish instrument was developed by deriving items from such well-established instruments as the Pier–Harris Self-Concept Scale and Rosenberg’s Self-Image Scale [21,22]. Validity and reliability as measured by internal consistency were shown to be adequate using Cronbach’s a (0.71–0.82). The concordant instrument for adults, As I See Myself, replaced I Think I Am in 2004. These two
For statistical analyses, the Statistical Package for Social Sciences, Version 15.0, was used. Frequencies were calculated and cross-tabulations were carried out. Descriptions were presented as numbers and percentages in variables at nominal level. Pearson’s v2 test was used for significance tests on variables on the nominal level. For comparisons between groups, the Mann–Whitney U test was used. For comparisons of dependent factors over time, Wilcoxon’s signed ranks test was used. P values less than 0.05 were considered significant. 2.5. Ethics The Linköping and Örebro regional research committees approved this study. Those who participated gave their verbal and/ or written consent. Written and verbal information was provided to all medical staff. 3. Results Of the 151 subjects, 146 were traceable and 97 returned all questionnaires. More women than men returned the questionnaires. Analyses revealed no differences between the participants and the dropouts with respect to sex, age, medical epilepsy-related factors, and measured sense of coherence or self-esteem. The participants were all between 18 and 27 years of age. Mean age was 23.5 years, and median age, 24 years.
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All participants had had epilepsy for at least 5 years, and 60.5% had been diagnosed for more than 10 years. At the end of the follow-up period, 67% reported being seizure free with or without AEDs. Twenty-one patients (21.6%) considered themselves to have recovered from epilepsy. The other participants (n = 76) still suffered from epilepsy and all but one of those used AEDs. Most subjects had generalized forms of epilepsy (46.4%), and 32.0% had localization-related epilepsy (Table 1). Of the participants who still had epilepsy, 75% were on monotherapy and 25% on polytherapy (Table 2). Drug-related side effects were experienced by 82% of participants taking AEDs. The most common side effect reported was tiredness.
Table 2 AED treatment 2004. AED
Number (%)
None Carbamazepine Valproic acid New-generation AEDsa Monotherapy Ditherapy Polytherapy
22 (22.7) 9 (9.3) 26 (26.8) 21 (21.6) 15 (15.5) 4 (4.1)
a New-generation AEDs included lamotrigine, levetiracetam, topiramate, and gabapentin.
Table 3 Values for self esteem and sense of coherence for young people with epilepsy in 1999, 2004 and general population.
3.1. Sense of coherence Between 1999 and 2004, sense of coherence decreased (P = 0.03) for the whole group (Table 3). Participants who were seizure free scored higher on the SOC-13 (P = 0.04) than those who still had seizures, but there was no significant correlation between seizure frequency and sense of coherence among participants who still experienced seizures (Fig. 2). Participants with intractable seizures did not score significantly lower than other participants. Side effects did not cause significantly lower sense of coherence. There were no differences between men and women and no correlation with classification of epilepsy. Participants on di- or polytherapy had significantly lower SOC-13 scores at the 5-year follow-up (P = 0.006) compared with participants on monotherapy, whose scores remained unchanged. Among the participants who had higher sense of coherence in 2004 than in 1999, there was no correlation with changes in seizure frequency. 3.2. Self-esteem Since the first measurement 5 years earlier, self-esteem had decreased (P < 0.05) (Table 3). There was a correlation between seizure frequency and self-esteem: higher seizure frequency correlated with lower self-esteem (P < 0.05) (Fig. 1). Intractable epilepsy, defined as seizures at least every month, was correlated with the lowest self-esteem scores (P < 0.05). In those who experienced side effects, there was a decline in self-esteem (P < 0.05). Participants who had recovered from epilepsy had better self-esteem than those who still experienced seizures (P < 0.001). One group increased their self-esteem scores during the 5-year period and this group had better seizure control than the other participants (P < 0.05). There were no differences between men and women and no correlation with classification of epilepsy.
1999
Self esteem Sense of coherence
2004
General population
M
SD
M
SD
M
SD
63,4a 64,05a
32,29a 13,15a
54,67 61,11
41,19 13,22
68,82a 65,04b
30,98a 10,39b
M=Means SD=Standard deviation a Ref. (10). b Ref. (20).
100
AISM 2004
522
50
0
50
Good
Partial
Poor
Very poor
Control of seizures Fig. 1. The relationship between self-esteem and control of seizures in young adults with epilepsy.
Table 1 Classification of epilepsy in 2004 according to ILAE: young patients with uncomplicated epilepsy. Type of epilepsy
Frequency, n
Localization-related symptomatic epilepsy Localization-related cryptogenic epilepsy Generalized idiopathic childhood absence epilepsy Generalized idiopathic juvenile absence epilepsy Generalized idiopathic juvenile myoclonic epilepsy Generalized idiopathic other generalized idiopathic epilepsies not defined Generalized idiopathic epilepsy with seizures precipitated by specific modes of action Generalized symptomatic epilepsy, nonspecific etiology Recovered from epilepsy
19 12 2 3 7 31
Total
97
1 1 21
4. Discussion The study by Raty et al. [10] involving the same participants with uncomplicated epilepsy in 1999 (13- to 22-year-olds) reported no significant difference in self-esteem and sense of coherence compared with healthy controls. Older youth experienced poorer self-esteem in both the epilepsy and control groups. In the present study, there was no comparison with controls, but studies in the general population do indicate that sense of coherence improves with age [19,25]. Our results show a decline in sense of coherence, indicating that sense of coherence decreased because of the epilepsy, but the decline is set in early adulthood and not during adolescence. The difficulties and barriers at this time of life are more apparent on the pathway to achieving adult goals such as employment, driver’s license, a partner, and a resi-
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80
SOC 2004
70
60
50
40
30 Good
Partial
Poor
Very poor
Control of seizures Fig. 2. The relationship between sense of coherence and control of seizures in young adults with epilepsy.
dence. Parental overprotection may also delay the acquisition of independence for young people with epilepsy [26,27] and may be one explanation of why the decline in sense of coherence is set in early adulthood and not during adolescence. The dropout rate was quite high especially among men. More women than men had recovered from epilepsy, indicating that men who no longer suffered from epilepsy had a diminished interest in participating in the follow-up. The questionnaires were quite time consuming, which may have caused persons who had recovered from epilepsy to be not as interested in participating as before. Because these participants had uncomplicated epilepsy we do not believe that cognitive impairment prohibited participation. Participants with severe epilepsy might have been more motivated to participate. There are several studies on various somatic diseases that support the relationship between sense of coherence and quality of life [28–31]: the stronger the sense of coherence, the better the quality of life. In the present study, sense of coherence was not significantly associated with epilepsy-related factors such as seizure frequency, AED side effects, and number of AEDs. On the other hand, sense of coherence could be a distinct measure for epilepsy as a phenomenon. This is a social label, which patients with epilepsy can experience regardless of the present situation. Having epilepsy during adolescence could influence sense of coherence negatively and therefore reduce the person’s ability to cope with stressful events in the future. It causes vulnerability in difficult life situations. A recent study describes the feeling of shame as a central emotion in the understanding of what it is like to have epilepsy [32].Other negative feelings described were fear, sorrow, and guilt, which all can contribute to a negative picture of the self. The decline in self-esteem among the participants in the present study is more prominent than the decline in sense of coherence. Self-esteem, unlike sense of coherence, seems to be significantly correlated with present epilepsy-related variables. The group with intractable seizures scored very low on self-esteem, but the difference with respect to sense of coherence was not significant. Side effects and number of AEDs are also associated with lower self-esteem. A previous study on patients with intractable partial epilepsy demonstrated that, apart from other psychological values, seizure severity was the most important predictor of self-esteem [33].
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Perucca et al. [34] recently studied the adverse effects of AEDs in 200 subjects with epilepsy. They suggest that all aspects of medication toxicity have an impact on subjective health status, but the effect within the cognition/coordination area seems to be the most deleterious. In this study, we found that side effects of AEDs were associated with low self-esteem. Health outcome studies in epilepsy indicate that side effects of AEDs have the strongest impact on subjective health [34,35]. Adverse effects of AEDs have a negative impact on health-related quality of life regardless of seizure frequency [36]. Health-related quality of life (HRQOL) has rarely been explicitly defined. Many authors use this concept, but provide no clear definition. Meador et al. wrote that HRQOL measures treatment outcome by considering more than seizure reduction or freedom [37]. The outcome must be balanced against the occurrence of neurotoxicity and other cognitive and behavioral effects. In this study, we chose to regard seizure frequency as a measure of illness severity, even though number of AEDs and their side effects, as well as psychosocial aspects, also reflect illness severity. Birbeck et al. report that improvement of HRQOL was evident only among patients who achieved seizure freedom [38]. Seizure reduction did not have the same positive impact on HRQOL. However, views differ about which factor is most important for illness severity and how this should be measured. Cramer et al. [39] argue that patients perceive a decrease in their overall health when they experience a seizure, but this also applies to side effects from AEDs. Patients who have been seizure free for a while regard seizure freedom as the most important factor, whereas patients who have frequent seizures are more concerned about side effects. This could mean that illness severity cannot be measured in the same way for all patients. Different factors are important to different individuals. The proposal that seizure frequency is the most important factor for health perception has also been contradicted by Pais-Ribeiro et al. [40], who state that optimistic orientation is the most important factor. Patients’ conceptions of epilepsy are more often of a psychosocial than of a medical nature. The psychosocial conceptions are often negative with feelings of fear and shame [32]. Such feelings can contribute to negative self-esteem and possibly to psychiatric comorbidity. Several studies have shown that psychiatric comorbidity, like depression and anxiety, may be the strongest predictor of health-related quality of life for people with epilepsy [41–43].
5. Conclusion Sense of coherence is the extent to which individuals are able to cope with severe crises and see a meaning in their lives. Growing up with epilepsy can lead to impairment of the sense of coherence and, therefore, a poorer ability to cope with difficult situations in life. In this study, we found that there was a decline in both sense of coherence and self-esteem over time for young adults with uncomplicated epilepsy. Our findings indicate that sense of coherence does not significantly correlate with epilepsy-related factors, but mirrors epilepsy as a phenomenon. We have shown that self-esteem is associated with epilepsy-related factors, among which we regard seizure frequency as the most important. Side effects and number of AEDs also lead to a decline in self-esteem. References [1] Winter DG. Personality, analysis and interpretations of lives. New York: McGraw–Hill; 1996. [2] Baker GA, Spector S, McGrath Y, Soteriou H. Impact of epilepsy in adolescence: a UK controlled study. Epilepsy Behav 2005;6:556–62. [3] Reeve DK, Lincoln NB. Coping with the challenge of transition in older adolescents with epilepsy. Seizure 2002;11:33–9.
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