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Quality of life in young people with treatment-responsive epilepsy: A controlled study
Epilepsy & Behavior 19 (2010) 623–626
Contents lists available at ScienceDirect
Epilepsy & Behavior j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / ye b e h
Brief Communication
Quality of life in young people with treatment-responsive epilepsy: A controlled study C.M. Eddy a,b, R. Rizzo c, M. Gulisano c, P. Calì c, M.M. Robertson d,e, A.E. Cavanna a,b,f,⁎ a
Department of Neuropsychiatry, Birmingham and Solihull Mental Health NHS Foundation Trust, Birmingham, UK School of Clinical and Experimental Medicine, University of Birmingham, Birmingham, UK Section of Child Neuropsychiatry, Department of Pediatrics, University of Catania, Catania, Italy d St. George's Hospital Medical School, St. George's Hospital, London, UK e Department of Mental Health Sciences, UCL, London, UK f Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, UCL, London, UK b c
a r t i c l e
i n f o
Article history: Received 12 July 2010 Revised 6 September 2010 Accepted 8 September 2010 Available online 18 October 2010 Keywords: Epilepsy Controlled seizures Quality of life Anxiety Self-perception
a b s t r a c t Objective: Quality of life (QoL) has been shown to be lower in individuals with epilepsy than the general public. However, few studies have investigated the QoL of individuals with well-controlled epilepsy. This study investigated the effects of epilepsy on QoL in persons with treatment-responsive seizures, beyond factors directly related to the presence of seizures. Methods: Fifty young patients with controlled epilepsy and 102 healthy controls completed a generic, multidimensional, self-report QoL instrument, along with standardized scales assessing anxiety, depression, and other emotional or behavioral difficulties. Results: Young people with epilepsy reported increased anxiety (P = 0.037) and more emotional and behavioral difficulties (P b 0.001). Though there were was no difference between the groups in Total QoL score, treatmentresponsive epilepsy was associated with lower QoL within the Self domain (P = 0.016). Conclusions: Epilepsy may exert a negative influence on QoL in relation to thoughts and feelings about the self in the context of complete seizure remission. Future research should investigate the therapeutic value of interventions targeting detrimental changes to self-perception in young people living with controlled epilepsy. © 2010 Elsevier Inc. All rights reserved.
1. Introduction Quality of life (QoL) is lower in individuals with epilepsy than the general public [1,2]. It has been shown that epilepsy can be linked to difficulties across a range of domains, affecting work, education, family, and social interaction [e.g., 3], and can have a significant impact on an individual's emotional well-being [e.g., 4]. The assessment of perceived QoL can inform treatment planning, while understanding which factors make an important contribution to QoL in epilepsy can encourage the development and prioritization of effective interventions. The QoL of adults with epilepsy can be linked to both clinical and demographic characteristics, such as seizure control [5], seizure frequency and severity [6–9], anxiety and depression [10–12], and age, sex, socioeconomic status, and employment status [e.g., 1,9,12]. Studies have also provided insight into specific factors related to the QoL of schoolaged patients during this critical period of growth and development. In accordance with the adult literature, QoL is lower for young people with epilepsy (YPWE) who have uncontrolled or “active” seizures [13,14] and more severe and/or more frequent seizures [13,15,16]. Other factors
that can be associated with the QoL of YPWE are number of medications [17], medication neurotoxicity [15,16], comorbid neurological conditions, socioeconomic status and age [16], and age at onset and illness duration [15]. However, some studies have failed to find links between QoL and the above factors [17,18]. There is limited literature relating to QoL in young people with wellcontrolled epilepsy. The current study investigated QoL in YPWE (aged 10–16) who had achieved complete seizure control through the use of antiepileptic medications. A generic multidimensional self-report QoL instrument [19,20] was used, as this may be more appropriate for individuals with controlled epilepsy and this measure allowed comparisons to be made with a healthy control group. As YPWE may exhibit higher rates of depression and social anxiety than healthy controls [21], clinical scales were also administered to investigate the impact of anxiety, depression, and other emotional and behavioral difficulties on QoL in YPWE. 2. Methods 2.1. Participants
⁎ Corresponding author. Institute of Neurology, UCL, Queen Square, London WC1N3BG, UK. E-mail address: [email protected] (A.E. Cavanna). 1525-5050/$ – see front matter © 2010 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2010.09.017
Participants comprised 50 young people with controlled idiopathic epilepsy who were consecutively referred to a child and adolescent
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C.M. Eddy et al. / Epilepsy & Behavior 19 (2010) 623–626
neuropsychiatry clinic (26 males, 24 females; mean age = 12.2 years, SD = 1.4, range 10–16) and 102 neurologically intact healthy controls (HCs) with no diagnosed clinical condition (68 males, 34 females; mean age = 13.1 years, SD= 1.7 years, range = 11–17) who were recruited from local schools. All participants with epilepsy were diagnosed according to the International League Against Epilepsy criteria. They were all taking medicationd for the condition (38 valproic acid, 6 topiramate, 4 ethosuximide, 1 lamotrigine, and 1 phenobarbital), resulting in complete control of seizures.
responsive epilepsy and controls for scores on the QoL measure and clinical scales. Further within-group analyses (Wilcoxon's signed rank test, Spearman's correlation coefficient ρ) were conducted for the epilepsy group, which investigated possible differences as a result of seizure focus and relationships between scores on the QoL measure and clinical scales. 3. Results 3.1. Between-group comparisons
2.2. Procedure The study received approval from the local ethics committee. Participants completed the Youth Quality of Life Instrument-Research Version (YQOL-R) [19,20] and three clinical measures: the Multidimensional Anxiety Scale for Children (MASC) [22]; the Child Depression Inventory (CDI) [23] and the Child Behavior Checklist (CBCL) [24]. 2.3. Measures 2.3.1. Youth Quality of Life Instrument-Research Version The YQOL–R contains two kinds of items: “perceptual” items, which concern the more subjective perceptions held by the adolescent himself or herself (e.g., “I feel that life is worthwhile”), and “contextual” items, which relate to potentially verifiable information (e.g., “During the past month, how often did you spend time with a friend having a good time outside of school?”). The 41 “perceptual items” generate a total QoL score and scores for four domains. The Self domain (14 items) concerns the adolescent's sense of the kind of person he or she is (e.g., “I feel good about myself”). The Relationships domain (14 items) assesses family and peer relationships (e.g., “I am happy with the friends I have”). The Environment domain includes 10 items relating to feelings about the environment, including “I feel my life is full of interesting things to do,” and the General QoL domain contains three broader evaluative items (e.g., “I enjoy life”). The 15 “contextual items” comprise individual indicators that allow the assessment of more objective factors that may affect perceived QoL. For all items other than the reverse-scored items D4, D6, D7, D8, D9, and D10, low scores indicate a low QoL. 2.3.2. Multidimensional Anxiety Scale for Children The MASC is a validated scale used to assess anxiety disorders in children and adolescents. It contains 39 items in three subscales (Physical Symptoms, Harm Avoidance, and Social Anxiety). Scores for these subscales are combined to generate a total score. 2.3.3. Child Depression Inventory The CDI is a validated, self-rated instrument containing 27 items that is used with children and adolescents aged 7–17. It allows the diagnosis of major depressive or dysthymic disorder in children and adolescents. 2.3.4. Child Behavior Checklist The CBCL is a validated parent-rated scale used to assess the frequency and intensity of a range of behavioral and emotional difficulties shown by a child over the preceding 6 months. It contains 140 items in eight syndrome scales (Withdrawn, Somatic Complaints, Anxious/Depressed, Social Problems, Thought Problems, Attention Problems, Delinquent Behavior, and Aggressive Behavior) and two composite scales (Externalizing Problems and Internalizing Problems). 2.4. Data analysis Between-group comparisons (Mann–Whitney U tests) were conducted to identify differences between young people with treatment-
When compared with HCs, YPWE exhibited significantly higher total scores on the MASC and CBCL and significantly higher scores on the Internalizing and Externalizing subscales of the latter measure (Table 1). For the QoL measure, YPWE exhibited significantly lower scores than HCs only in the Self domain (see [20] for a complete list of items), though there was a trend for YPWE to exhibit lower QoL scores in the General domain. Significance testing was not carried out on individual items as they contributed to domain scores. Observation of the data suggested that differences between the groups on individual items in the Self domain appeared to be small. However, the items that most seemed to distinguish YPWE and HCs were the items “I feel good about myself” (YPWE: mean = 7, SD = 3.51, median = 9; HCs: mean = 8, SD = 2.97, median = 10) and “I feel important to others” (YPWE: mean = 6, SD = 3.34, median = 6; HCs: mean = 7, SD = 3.10, median= 7), and higher scores on the item “I feel alone in my life” (YPWE: mean= 3, SD = 3.33, median= 1; HCs: mean= 2, SD = 2.54, median= 0). In relation to QoL contextual items, YPWE had significantly
Table 1 Scores and statistical differences for quality-of-life and clinical measures for young people with epilepsy and controls. Measure
Mean (SD) Healthy controls Young people with epilepsy
CDI 8.73 (8.69) MASC Total 33.26 (17.38) Physical 7.95 (5.53) Harm 11.13 (5.85) Social anxiety 8.88 (6.75) CBCL Total 10.83 (7.89) Internalizing 4.69 (3.35) Externalizing 1.97 (1.78) QOL Perceptual Total 320.00 (47.74) Self 101.21 (20.04) Relationships 114.72 (22.00) Environment 83.24 (11.47) General 25.70 (5.88) QOL Contextual D1 2.03 (1.20) D2 2.01 (1.01) D3 2.49 (1.38) D4 1.57 (1.21) D5 2.77 (1.29) D6 0.56 (1.02) D7 1.15 (1.23) D8 0.82 (1.07) D9 0.53 (0.95) D10 0.62 (1.09) D11 3.13 (0.82) D12 3.68 (1.00) D13 2.23 (1.59) D14 3.88 (0.49) D15 1.72 (1.52) a b
Significant at the 0.05 level. Significant at the 0.001 level.
8.02 (5.45) 38.16 9.58 11.34 10.28
(14.94) (7.29) (5.48) (5.94)
22.84 (17.45) 8.72 (6.81) 7.3 (7.45) 311.62 93.78 110.86 82.24 26.52 2.26 2.12 2.04 1.18 2.30 0.70 0.90 1.18 0.70 0.80 2.84 3.50 2.06 3.60 1.18
Mann–Whitney U, P value 2366.5, 0.471 2019, 0.037a 2324, 0.375 2510, 0.875 2122.5, 0.093 1285.5, b0.001b 1588, b 0.001b 727.5, b 0.001b
(52.18) (19.99) (25.30) (13.71) (5.91)
2301, 0.329 1936.5, 0.016a 110.5, 0.336 2524, 0.919 2082, 0.060
(1.41) (1.15) (1.56) (1.49) (1.50) (1.13) (1.25) (1.35) (0.98) (0.97) (1.30) (0.91) (1.58) (0.81) (1.48)
903.5, 0.014a 1086, 0.241 1147, 0.465 1078, 0.214 1160.5, 0.526 965.5, 0.030a 1047, 0.136 1188.5, 0.658 1164, 0.522 1148, 0.439 1219.5, 0.825 1192.5, 0.624 1038, 0.132 1164.5, 0.423 1033, 0.117
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Table 2 Correlations between quality-of-life scores and scores for clinical measures for young people with epilepsy. Measure
Domain Total a
CDI MASC Total Physical Symptoms Harm Avoidance Social Anxiety CBCL Total Internalizing subscale Externalizing subscale a b
Self
Relationships
Environment
General
ρ
P value
ρ
P value
ρ
P value
ρ
P value
ρ
P value
–0.273
0.055
–0.343
0.015b
–0.324
0.022b
–0.239
0.102
–0.249
0.082
–0.291 –0.330 –0.218 –0.117
0.040b 0.019b 0.129 0.417
–0.205 –0.271 –0.140 –0.032
0.153 0.057 0.333 0.826
–0.288 –0.277 –0.274 –0.116
0.043b 0.052 0.054 0.420
–0.117 0.007 –0.065 –0.236
0.417 0.962 0.655 0.099
–0.152 0.002 –0.209 –0.147
0.290 0.990 0.146 0.310
0.139 –0.035 0.140
0.336 0.810 0.333
–0.239 0.155 0.193
0.094 0.282 0.179
0.108 –0.044 0.108
0.454 0.764 0.454
–0.089 –0.135 –0.141
0.544 0.354 0.333
–0.107 –0.132 –0.089
0.465 0.368 0.544
Spearman's correlation coefficient. Significant at the 0.05 level.
higher scores than HCs on the items “How often did you have a conversation with an adult about something that is important to you?” and “How often have you had serious emotional or mental health problems that you felt you needed help with?” (Table 1). Further analyses investigated differences between subgroups of YPWE, who were grouped according to seizure localization. Thirteen patients were diagnosed with temporal lobe epilepsy, 10 had frontal lobe epilepsy, 10 had occipital lobe epilepsy, 7 had parietal lobe epilepsy, and 10 had idiopathic generalized epilepsy. After corrections were made for multiple pairwise comparisons, there were no statistically significant differences between any of the groups on the QoL or clinical measures. This was also the case when YPWE were divided into groups according to side of EEG focus (left, right, or bilateral). 3.2. Correlations For the entire epilepsy group, total QoL scores were significantly negatively related to MASC Total and Physical Symptoms scores (Table 2). Poorer QoL in the Self domain was significantly linked to higher scores on the CDI. Scores on the QoL Relationships domain were negatively related to higher scores on the CDI and MASC. With Bonferroni correction for multiple comparisons, only the difference between YPWE and HCs on the CBCL remains significant. However, the use of nonparametric tests (which have lower power than parametric tests) could have increased the likelihood of making a type II error. 4. Discussion This study investigated QoL in treatment-responsive epilepsy to assess the influences of epilepsy on QoL beyond factors directly related to the occurrence of seizures. We found no difference in total Qol scores between YPWE and HCs. However, individuals with treatment-responsive epilepsy exhibited lower QoL scores in the Self domain than HCs. It may therefore be speculated that epilepsy can exert a negative influence on QoL related to thoughts and feelings about the self in the context of complete seizure remission. The current study found evidence of response trends that may indicate YPWE who had achieved excellent seizure control while taking antiepileptic medications felt lonely more often than controls and were less likely than controls to feel good about themselves and believe that they were valued by others. However, further research on larger samples is needed to determine the exact differences perceived by YPWE in this QoL domain. Negative evaluations of the self and feelings of social isolation may be linked to depressive feelings in YPWE, as scores for the Self domain were related to CDI scores. As our YPWE did not experience significantly
more depressive symptoms than controls, additional factors could have affected the results of this study. Young people with epilepsy were more likely than controls to feel they have significant mental and emotional problems, which was in accordance with the finding that YPWE exhibited more emotional and behavioral difficulties according to the CBCL. The greatest difference from controls was the number of externalizing behaviors exhibited by YPWE, which include attention problems and delinquent or aggressive behaviors. On a more positive note, other contextual QoL items indicated that these individuals clearly have insight into their difficulties, and this may explain the finding that they are more likely to seek social support from older adults. However, it is unclear from the data whether seeking others’ advice more often reflects that YPWE have more problems than HCs or that they simply communicate more with adults. Epilepsy was associated with significantly greater anxiety, though it is possible that such symptoms could have been related to the side effects of medication in some individuals [25]. Higher levels of anxiety and depression were related to lower QoL overall and within the Relationships domain. It is possible that some of the items of the YQOL-R are more sensitive to symptoms of anxiety and depression. However, the group differences found in the current study are not easily explained by the presence of such symptoms. Individuals with epilepsy did not exhibit more depression, or lower Total QoL or Relationships domain scores when compared with controls. Increased anxiety was not linked to the lower Self domain scores obtained by YPWE. Differences in QoL and anxiety were present even though all of the YPWE had well-controlled seizures. These findings have crucial implications. Although other studies have shown that adults with better controlled epilepsy report better QoL [11] and that seizure severity and frequency are predictive of QoL [6–9], this study has highlighted that specific difficulties remain in young people in the context of seizure remission. There is evidence that QoL of individuals with epilepsy can be positively related to perceived self-efficacy [26], which may be defined as an individual's perceived ability to perform a behavior [27]. Because seizures tend to occur without warning, previous experience of these symptoms could have encouraged the development of feelings of vulnerability, helplessness, and lack of self-control or self-efficacy in dealing with symptoms of their illness. YPWE may have lower selfesteem than HCs [17] and young people with diabetes [28], and have been shown to hold more negative perceptions of their academic ability and social interaction than young children with asthma [29]. The lower QoL in the Self domain reported by patients in the current study may suggest that negative alterations to self-perception are present in patients with treatment-responsive seizures. Studies show that feelings of self-efficacy can have an important influence on an
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individual's health, lifestyle, and mental well-being [30,31]. Lower self-esteem or lack of self-belief could reduce academic prospects and encourage social isolation, and could help explain some of the reported links between employment and QoL [9]. The patient population of this study was homogeneous in the sense that all YPWE were seizure free, but the relatively small sample size limited the generalizability of the comparison between subgroups of patients with different diagnoses (e.g., frontal vs temporal lobe epilepsy). Another possible limitation of the current study is referral bias, as all YPWE came from a specialist neuropsychiatry clinic. Future research should further investigate QoL in relation to the self in both children and young adults with controlled epilepsy and the possibility of differences linked to seizure localization. In conclusion, there were relatively few differences in the QoL scores for YPWE and HCs. However, the differences in the Self domain found in the current study could imply that controlled epilepsy is associated with changes in cognitions about the self. Both these changes in perceived QoL and a generalized increase in anxiety levels were present without significant depression. Treatments targeting symptoms of anxiety and negative perceptions relating to the self are important lines of intervention that could have a critical influence on the future well-being of young people living with controlled epilepsy. Conflict of interest statement None declared. References [1] Baker GA, Jacoby A, Buck D, Stalgis C, Monnet D. Quality of life of people with epilepsy: a European study. Epilepsia 1997;38:353–62. [2] Berto P. Quality of life in patients with epilepsy and impact of treatments. Pharmacoeconomics 2002;20:1039–59. [3] Bishop M, Allen CA. The impact of epilepsy on quality of life: a qualitative analysis. Epilepsy Behav 2003;4:226–33. [4] Leppik IE. Quality of life of people with epilepsy in the United States. Clin Ther 1998;20:A13–8 [Suppl. A]. [5] Kubota H, Awaya Y. Assessment of health-related quality of life and influencing factors using QOLIE-31 in Japanese patients with epilepsy. Epilepsy Behav 2010;18:381–7. [6] Baker GA, Nashef L, van Hout. Current issues in the management of epilepsy: the impact of frequent seizures on cost of illness, quality of life and mortality. Epilepsia 1997;38(Suppl 1):S1–8. [7] Collings JA. Psychosocial well-being and epilepsy: an empirical study. Epilepsia 1990;31:418–26.
[8] Harden CL, Maroof DA, Nikolov B, et al. The effect of seizure severity on quality of life in epilepsy. Epilepsy Behav 2007;11:208–11. [9] Tlusta E, Zarubora J, Simko J, Hojdikova H, Salek S, Vlcek J. Clinical and demographic characteristics predicting QOL in patients with epilepsy in the Czech Republic: how this can influence practice. Seizure 2009;18:85–9. [10] Johnson EK, Jones JE, Seidenberg M, Hermann BP. The relative impact of anxiety, depression, and clinical seizure features on health-related quality of life in epilepsy. Epilepsia 2004;45:544–50. [11] Choi-Kwon S, Chung C, Kim H, et al. Factors affecting the quality of life in patients with epilepsy in Seoul, South Korea. Acta Neurol Scand 2003;108:428–34. [12] Senol V, Soyuer F, Arman F, Ozturk A. Influence of fatigue, depression, and demographic, socioeconomic, and clinical variables on quality of life of patients with epilepsy. Epilepsy Behav 2007;10:96–104. [13] Austin JK, Huster GA, Dunn DW, Risinger MW. Adolescents with active or inactive epilepsy or asthma: a comparison of quality of life. Epilepsia 1996;37:1228–38. [14] Elliott I. Psychosocial functioning in adolescents with complex partial seizures. Axone 1992;13:72–6. [15] Benavente-Aguilar I, Morales-Blanquez C, Rubio EA, Ray JM. Quality of life of adolescents suffering from epilepsy living in the community. J Paediatr Child Health 2004;40:110–3. [16] Devinsky O, Westbrook L, Cramer J, Glassman M, Perrine K, Camfield C. Risk factors for poor health-related quality of life in adolescents with epilepsy. Epilepsia 1999;37:1228–38. [17] Miller V, Palermo T, Grewe S. Quality of life in pediatric epilepsy: demographic and disease related predictors and comparison with healthy controls. Epilepsy Behav 2003;4:36–42. [18] Montanaro M, Battistella PA, Boniver C, Galeone D. Quality of life in young Italian patients with epilepsy. Neurol Sci 2004;25:264–73. [19] Edwards TC, Hueber CE, Connell FA, Patrick DL. Adolescent quality of life: Part I. Conceptual and measurement model. J Adolesc 2002;25:275–86. [20] Patrick DL, Edwards TC, Topolski T. Adolescent quality of life: Part II. Initial validation of a new instrument. J Adolesc 2002;25:287–300. [21] Baker GA, Spector S, McGrath Y, Soteriou H. Impact of epilepsy in adolescence: a UK controlled study. Epilepsy Behav 2005;6:556–62. [22] March JS, Parker JDA, Sullivan K, et al. The Multidimensional Anxiety Scales for Children (MASC): factor structure, reliability and validity. J Am Acad Child Adolesc Psychiatry 1997;36:544–52. [23] Kovacs M. Children's Depression Inventory (CDI). New York: Multihealth Systems, Inc.; 1992. [24] Achenbach T, Edelbrock C. Manual for the Child Behavior Checklist and Revised Child Behavior Profile. Burlington: Univ. of Vermont Department of Psychiatry; 1983. [25] Cavanna AE, Ali F, Rickards HE, McCorry D. Behavioral and cognitive effects of antiepileptic drugs. Discov Med 2010;9:138–44. [26] Amir M, Roziner I, Knoll A, Neufeld MY. Self-efficacy and social support as mediators in the relation between disease severity and quality of life in patients with epilepsy. Epilepsia 1999;40:216–24. [27] Bandura A. Self-efficacy: the exercise of control. New York: Freeman; 1997. [28] Hoare P, Mann H. Self esteem and behavioural adjustment in children with epilepsy and children with diabetes. J Psychosom Res 1994;38:859–69. [29] Choiu HH, Hsieh LP. Comparative study of children's self concepts and parenting stress between families of children with epilepsy and asthma. J Nurs Res 2008;16:65–74. [30] O'Leary A. Self efficacy and health. Behav Res Ther 1985;23:437–51. [31] Strecher VJ, De Vellis BM, Becker MH, Rosenstock IM. The role of self efficacy in achieving health behaviour change. Health Educ Behav 1986;13:73–92.
Contents lists available at ScienceDirect
Epilepsy & Behavior j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / ye b e h
Brief Communication
Quality of life in young people with treatment-responsive epilepsy: A controlled study C.M. Eddy a,b, R. Rizzo c, M. Gulisano c, P. Calì c, M.M. Robertson d,e, A.E. Cavanna a,b,f,⁎ a
Department of Neuropsychiatry, Birmingham and Solihull Mental Health NHS Foundation Trust, Birmingham, UK School of Clinical and Experimental Medicine, University of Birmingham, Birmingham, UK Section of Child Neuropsychiatry, Department of Pediatrics, University of Catania, Catania, Italy d St. George's Hospital Medical School, St. George's Hospital, London, UK e Department of Mental Health Sciences, UCL, London, UK f Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, UCL, London, UK b c
a r t i c l e
i n f o
Article history: Received 12 July 2010 Revised 6 September 2010 Accepted 8 September 2010 Available online 18 October 2010 Keywords: Epilepsy Controlled seizures Quality of life Anxiety Self-perception
a b s t r a c t Objective: Quality of life (QoL) has been shown to be lower in individuals with epilepsy than the general public. However, few studies have investigated the QoL of individuals with well-controlled epilepsy. This study investigated the effects of epilepsy on QoL in persons with treatment-responsive seizures, beyond factors directly related to the presence of seizures. Methods: Fifty young patients with controlled epilepsy and 102 healthy controls completed a generic, multidimensional, self-report QoL instrument, along with standardized scales assessing anxiety, depression, and other emotional or behavioral difficulties. Results: Young people with epilepsy reported increased anxiety (P = 0.037) and more emotional and behavioral difficulties (P b 0.001). Though there were was no difference between the groups in Total QoL score, treatmentresponsive epilepsy was associated with lower QoL within the Self domain (P = 0.016). Conclusions: Epilepsy may exert a negative influence on QoL in relation to thoughts and feelings about the self in the context of complete seizure remission. Future research should investigate the therapeutic value of interventions targeting detrimental changes to self-perception in young people living with controlled epilepsy. © 2010 Elsevier Inc. All rights reserved.
1. Introduction Quality of life (QoL) is lower in individuals with epilepsy than the general public [1,2]. It has been shown that epilepsy can be linked to difficulties across a range of domains, affecting work, education, family, and social interaction [e.g., 3], and can have a significant impact on an individual's emotional well-being [e.g., 4]. The assessment of perceived QoL can inform treatment planning, while understanding which factors make an important contribution to QoL in epilepsy can encourage the development and prioritization of effective interventions. The QoL of adults with epilepsy can be linked to both clinical and demographic characteristics, such as seizure control [5], seizure frequency and severity [6–9], anxiety and depression [10–12], and age, sex, socioeconomic status, and employment status [e.g., 1,9,12]. Studies have also provided insight into specific factors related to the QoL of schoolaged patients during this critical period of growth and development. In accordance with the adult literature, QoL is lower for young people with epilepsy (YPWE) who have uncontrolled or “active” seizures [13,14] and more severe and/or more frequent seizures [13,15,16]. Other factors
that can be associated with the QoL of YPWE are number of medications [17], medication neurotoxicity [15,16], comorbid neurological conditions, socioeconomic status and age [16], and age at onset and illness duration [15]. However, some studies have failed to find links between QoL and the above factors [17,18]. There is limited literature relating to QoL in young people with wellcontrolled epilepsy. The current study investigated QoL in YPWE (aged 10–16) who had achieved complete seizure control through the use of antiepileptic medications. A generic multidimensional self-report QoL instrument [19,20] was used, as this may be more appropriate for individuals with controlled epilepsy and this measure allowed comparisons to be made with a healthy control group. As YPWE may exhibit higher rates of depression and social anxiety than healthy controls [21], clinical scales were also administered to investigate the impact of anxiety, depression, and other emotional and behavioral difficulties on QoL in YPWE. 2. Methods 2.1. Participants
⁎ Corresponding author. Institute of Neurology, UCL, Queen Square, London WC1N3BG, UK. E-mail address: [email protected] (A.E. Cavanna). 1525-5050/$ – see front matter © 2010 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2010.09.017
Participants comprised 50 young people with controlled idiopathic epilepsy who were consecutively referred to a child and adolescent
624
C.M. Eddy et al. / Epilepsy & Behavior 19 (2010) 623–626
neuropsychiatry clinic (26 males, 24 females; mean age = 12.2 years, SD = 1.4, range 10–16) and 102 neurologically intact healthy controls (HCs) with no diagnosed clinical condition (68 males, 34 females; mean age = 13.1 years, SD= 1.7 years, range = 11–17) who were recruited from local schools. All participants with epilepsy were diagnosed according to the International League Against Epilepsy criteria. They were all taking medicationd for the condition (38 valproic acid, 6 topiramate, 4 ethosuximide, 1 lamotrigine, and 1 phenobarbital), resulting in complete control of seizures.
responsive epilepsy and controls for scores on the QoL measure and clinical scales. Further within-group analyses (Wilcoxon's signed rank test, Spearman's correlation coefficient ρ) were conducted for the epilepsy group, which investigated possible differences as a result of seizure focus and relationships between scores on the QoL measure and clinical scales. 3. Results 3.1. Between-group comparisons
2.2. Procedure The study received approval from the local ethics committee. Participants completed the Youth Quality of Life Instrument-Research Version (YQOL-R) [19,20] and three clinical measures: the Multidimensional Anxiety Scale for Children (MASC) [22]; the Child Depression Inventory (CDI) [23] and the Child Behavior Checklist (CBCL) [24]. 2.3. Measures 2.3.1. Youth Quality of Life Instrument-Research Version The YQOL–R contains two kinds of items: “perceptual” items, which concern the more subjective perceptions held by the adolescent himself or herself (e.g., “I feel that life is worthwhile”), and “contextual” items, which relate to potentially verifiable information (e.g., “During the past month, how often did you spend time with a friend having a good time outside of school?”). The 41 “perceptual items” generate a total QoL score and scores for four domains. The Self domain (14 items) concerns the adolescent's sense of the kind of person he or she is (e.g., “I feel good about myself”). The Relationships domain (14 items) assesses family and peer relationships (e.g., “I am happy with the friends I have”). The Environment domain includes 10 items relating to feelings about the environment, including “I feel my life is full of interesting things to do,” and the General QoL domain contains three broader evaluative items (e.g., “I enjoy life”). The 15 “contextual items” comprise individual indicators that allow the assessment of more objective factors that may affect perceived QoL. For all items other than the reverse-scored items D4, D6, D7, D8, D9, and D10, low scores indicate a low QoL. 2.3.2. Multidimensional Anxiety Scale for Children The MASC is a validated scale used to assess anxiety disorders in children and adolescents. It contains 39 items in three subscales (Physical Symptoms, Harm Avoidance, and Social Anxiety). Scores for these subscales are combined to generate a total score. 2.3.3. Child Depression Inventory The CDI is a validated, self-rated instrument containing 27 items that is used with children and adolescents aged 7–17. It allows the diagnosis of major depressive or dysthymic disorder in children and adolescents. 2.3.4. Child Behavior Checklist The CBCL is a validated parent-rated scale used to assess the frequency and intensity of a range of behavioral and emotional difficulties shown by a child over the preceding 6 months. It contains 140 items in eight syndrome scales (Withdrawn, Somatic Complaints, Anxious/Depressed, Social Problems, Thought Problems, Attention Problems, Delinquent Behavior, and Aggressive Behavior) and two composite scales (Externalizing Problems and Internalizing Problems). 2.4. Data analysis Between-group comparisons (Mann–Whitney U tests) were conducted to identify differences between young people with treatment-
When compared with HCs, YPWE exhibited significantly higher total scores on the MASC and CBCL and significantly higher scores on the Internalizing and Externalizing subscales of the latter measure (Table 1). For the QoL measure, YPWE exhibited significantly lower scores than HCs only in the Self domain (see [20] for a complete list of items), though there was a trend for YPWE to exhibit lower QoL scores in the General domain. Significance testing was not carried out on individual items as they contributed to domain scores. Observation of the data suggested that differences between the groups on individual items in the Self domain appeared to be small. However, the items that most seemed to distinguish YPWE and HCs were the items “I feel good about myself” (YPWE: mean = 7, SD = 3.51, median = 9; HCs: mean = 8, SD = 2.97, median = 10) and “I feel important to others” (YPWE: mean = 6, SD = 3.34, median = 6; HCs: mean = 7, SD = 3.10, median= 7), and higher scores on the item “I feel alone in my life” (YPWE: mean= 3, SD = 3.33, median= 1; HCs: mean= 2, SD = 2.54, median= 0). In relation to QoL contextual items, YPWE had significantly
Table 1 Scores and statistical differences for quality-of-life and clinical measures for young people with epilepsy and controls. Measure
Mean (SD) Healthy controls Young people with epilepsy
CDI 8.73 (8.69) MASC Total 33.26 (17.38) Physical 7.95 (5.53) Harm 11.13 (5.85) Social anxiety 8.88 (6.75) CBCL Total 10.83 (7.89) Internalizing 4.69 (3.35) Externalizing 1.97 (1.78) QOL Perceptual Total 320.00 (47.74) Self 101.21 (20.04) Relationships 114.72 (22.00) Environment 83.24 (11.47) General 25.70 (5.88) QOL Contextual D1 2.03 (1.20) D2 2.01 (1.01) D3 2.49 (1.38) D4 1.57 (1.21) D5 2.77 (1.29) D6 0.56 (1.02) D7 1.15 (1.23) D8 0.82 (1.07) D9 0.53 (0.95) D10 0.62 (1.09) D11 3.13 (0.82) D12 3.68 (1.00) D13 2.23 (1.59) D14 3.88 (0.49) D15 1.72 (1.52) a b
Significant at the 0.05 level. Significant at the 0.001 level.
8.02 (5.45) 38.16 9.58 11.34 10.28
(14.94) (7.29) (5.48) (5.94)
22.84 (17.45) 8.72 (6.81) 7.3 (7.45) 311.62 93.78 110.86 82.24 26.52 2.26 2.12 2.04 1.18 2.30 0.70 0.90 1.18 0.70 0.80 2.84 3.50 2.06 3.60 1.18
Mann–Whitney U, P value 2366.5, 0.471 2019, 0.037a 2324, 0.375 2510, 0.875 2122.5, 0.093 1285.5, b0.001b 1588, b 0.001b 727.5, b 0.001b
(52.18) (19.99) (25.30) (13.71) (5.91)
2301, 0.329 1936.5, 0.016a 110.5, 0.336 2524, 0.919 2082, 0.060
(1.41) (1.15) (1.56) (1.49) (1.50) (1.13) (1.25) (1.35) (0.98) (0.97) (1.30) (0.91) (1.58) (0.81) (1.48)
903.5, 0.014a 1086, 0.241 1147, 0.465 1078, 0.214 1160.5, 0.526 965.5, 0.030a 1047, 0.136 1188.5, 0.658 1164, 0.522 1148, 0.439 1219.5, 0.825 1192.5, 0.624 1038, 0.132 1164.5, 0.423 1033, 0.117
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Table 2 Correlations between quality-of-life scores and scores for clinical measures for young people with epilepsy. Measure
Domain Total a
CDI MASC Total Physical Symptoms Harm Avoidance Social Anxiety CBCL Total Internalizing subscale Externalizing subscale a b
Self
Relationships
Environment
General
ρ
P value
ρ
P value
ρ
P value
ρ
P value
ρ
P value
–0.273
0.055
–0.343
0.015b
–0.324
0.022b
–0.239
0.102
–0.249
0.082
–0.291 –0.330 –0.218 –0.117
0.040b 0.019b 0.129 0.417
–0.205 –0.271 –0.140 –0.032
0.153 0.057 0.333 0.826
–0.288 –0.277 –0.274 –0.116
0.043b 0.052 0.054 0.420
–0.117 0.007 –0.065 –0.236
0.417 0.962 0.655 0.099
–0.152 0.002 –0.209 –0.147
0.290 0.990 0.146 0.310
0.139 –0.035 0.140
0.336 0.810 0.333
–0.239 0.155 0.193
0.094 0.282 0.179
0.108 –0.044 0.108
0.454 0.764 0.454
–0.089 –0.135 –0.141
0.544 0.354 0.333
–0.107 –0.132 –0.089
0.465 0.368 0.544
Spearman's correlation coefficient. Significant at the 0.05 level.
higher scores than HCs on the items “How often did you have a conversation with an adult about something that is important to you?” and “How often have you had serious emotional or mental health problems that you felt you needed help with?” (Table 1). Further analyses investigated differences between subgroups of YPWE, who were grouped according to seizure localization. Thirteen patients were diagnosed with temporal lobe epilepsy, 10 had frontal lobe epilepsy, 10 had occipital lobe epilepsy, 7 had parietal lobe epilepsy, and 10 had idiopathic generalized epilepsy. After corrections were made for multiple pairwise comparisons, there were no statistically significant differences between any of the groups on the QoL or clinical measures. This was also the case when YPWE were divided into groups according to side of EEG focus (left, right, or bilateral). 3.2. Correlations For the entire epilepsy group, total QoL scores were significantly negatively related to MASC Total and Physical Symptoms scores (Table 2). Poorer QoL in the Self domain was significantly linked to higher scores on the CDI. Scores on the QoL Relationships domain were negatively related to higher scores on the CDI and MASC. With Bonferroni correction for multiple comparisons, only the difference between YPWE and HCs on the CBCL remains significant. However, the use of nonparametric tests (which have lower power than parametric tests) could have increased the likelihood of making a type II error. 4. Discussion This study investigated QoL in treatment-responsive epilepsy to assess the influences of epilepsy on QoL beyond factors directly related to the occurrence of seizures. We found no difference in total Qol scores between YPWE and HCs. However, individuals with treatment-responsive epilepsy exhibited lower QoL scores in the Self domain than HCs. It may therefore be speculated that epilepsy can exert a negative influence on QoL related to thoughts and feelings about the self in the context of complete seizure remission. The current study found evidence of response trends that may indicate YPWE who had achieved excellent seizure control while taking antiepileptic medications felt lonely more often than controls and were less likely than controls to feel good about themselves and believe that they were valued by others. However, further research on larger samples is needed to determine the exact differences perceived by YPWE in this QoL domain. Negative evaluations of the self and feelings of social isolation may be linked to depressive feelings in YPWE, as scores for the Self domain were related to CDI scores. As our YPWE did not experience significantly
more depressive symptoms than controls, additional factors could have affected the results of this study. Young people with epilepsy were more likely than controls to feel they have significant mental and emotional problems, which was in accordance with the finding that YPWE exhibited more emotional and behavioral difficulties according to the CBCL. The greatest difference from controls was the number of externalizing behaviors exhibited by YPWE, which include attention problems and delinquent or aggressive behaviors. On a more positive note, other contextual QoL items indicated that these individuals clearly have insight into their difficulties, and this may explain the finding that they are more likely to seek social support from older adults. However, it is unclear from the data whether seeking others’ advice more often reflects that YPWE have more problems than HCs or that they simply communicate more with adults. Epilepsy was associated with significantly greater anxiety, though it is possible that such symptoms could have been related to the side effects of medication in some individuals [25]. Higher levels of anxiety and depression were related to lower QoL overall and within the Relationships domain. It is possible that some of the items of the YQOL-R are more sensitive to symptoms of anxiety and depression. However, the group differences found in the current study are not easily explained by the presence of such symptoms. Individuals with epilepsy did not exhibit more depression, or lower Total QoL or Relationships domain scores when compared with controls. Increased anxiety was not linked to the lower Self domain scores obtained by YPWE. Differences in QoL and anxiety were present even though all of the YPWE had well-controlled seizures. These findings have crucial implications. Although other studies have shown that adults with better controlled epilepsy report better QoL [11] and that seizure severity and frequency are predictive of QoL [6–9], this study has highlighted that specific difficulties remain in young people in the context of seizure remission. There is evidence that QoL of individuals with epilepsy can be positively related to perceived self-efficacy [26], which may be defined as an individual's perceived ability to perform a behavior [27]. Because seizures tend to occur without warning, previous experience of these symptoms could have encouraged the development of feelings of vulnerability, helplessness, and lack of self-control or self-efficacy in dealing with symptoms of their illness. YPWE may have lower selfesteem than HCs [17] and young people with diabetes [28], and have been shown to hold more negative perceptions of their academic ability and social interaction than young children with asthma [29]. The lower QoL in the Self domain reported by patients in the current study may suggest that negative alterations to self-perception are present in patients with treatment-responsive seizures. Studies show that feelings of self-efficacy can have an important influence on an
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individual's health, lifestyle, and mental well-being [30,31]. Lower self-esteem or lack of self-belief could reduce academic prospects and encourage social isolation, and could help explain some of the reported links between employment and QoL [9]. The patient population of this study was homogeneous in the sense that all YPWE were seizure free, but the relatively small sample size limited the generalizability of the comparison between subgroups of patients with different diagnoses (e.g., frontal vs temporal lobe epilepsy). Another possible limitation of the current study is referral bias, as all YPWE came from a specialist neuropsychiatry clinic. Future research should further investigate QoL in relation to the self in both children and young adults with controlled epilepsy and the possibility of differences linked to seizure localization. In conclusion, there were relatively few differences in the QoL scores for YPWE and HCs. However, the differences in the Self domain found in the current study could imply that controlled epilepsy is associated with changes in cognitions about the self. Both these changes in perceived QoL and a generalized increase in anxiety levels were present without significant depression. Treatments targeting symptoms of anxiety and negative perceptions relating to the self are important lines of intervention that could have a critical influence on the future well-being of young people living with controlled epilepsy. Conflict of interest statement None declared. References [1] Baker GA, Jacoby A, Buck D, Stalgis C, Monnet D. Quality of life of people with epilepsy: a European study. Epilepsia 1997;38:353–62. [2] Berto P. Quality of life in patients with epilepsy and impact of treatments. Pharmacoeconomics 2002;20:1039–59. [3] Bishop M, Allen CA. The impact of epilepsy on quality of life: a qualitative analysis. Epilepsy Behav 2003;4:226–33. [4] Leppik IE. Quality of life of people with epilepsy in the United States. Clin Ther 1998;20:A13–8 [Suppl. A]. [5] Kubota H, Awaya Y. Assessment of health-related quality of life and influencing factors using QOLIE-31 in Japanese patients with epilepsy. Epilepsy Behav 2010;18:381–7. [6] Baker GA, Nashef L, van Hout. Current issues in the management of epilepsy: the impact of frequent seizures on cost of illness, quality of life and mortality. Epilepsia 1997;38(Suppl 1):S1–8. [7] Collings JA. Psychosocial well-being and epilepsy: an empirical study. Epilepsia 1990;31:418–26.
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