Clinical Pediatrics2015, Vol. 54(14) 1334 –1338© The Author(s) 2015Reprints and permissions: sagepub.com/journalsPermissions.navDOI: 10.1177/0009922815580405cpj.sagepub.com

Article

Introduction

Epilepsy is relatively common among children, with a reported rate of 3.4 to 3.9 per 1000 children in developed countries1 and a significantly higher rate for children in developing countries.2 The consequences of epilepsy are not limited to physical injuries but can also include a seri-ous impairment of a child’s psychosocial development.3 The unpredictability of a seizure’s onset often brings a variety of potentially embarrassing and dangerous situa-tions depending on the circumstances. Beyond seizures, children with epilepsy face numerous challenges, includ-ing being treated as less intelligent and less “social” than healthy children, and epileptic children tend to experi-ence limited school, professional career, and marriage prospects.4 Up to 30% of children with epilepsy have depressive disorders, and an estimated 16% have anxiety disorders.5,6 Likewise, approximately half of all children with epilepsy have school-related difficulties: learning disabilities, aggression, and attention-deficit/hyperactiv-ity disorder.7 All the consequences mentioned above can have a significant adverse impact on quality of life for children with epilepsy.

Health-related quality of life is defined as the subjec-tive perception of the impact of health status, including dis-ease and treatment, on physical, psychological, and social functioning and well-being.8 Perception may depend not only on a disease’s severity but also on an individual’s age, gender, social class, ethnicity, education, anxiety level, and ability to exaggerate or minimize symptoms. Although

most empirical assessments have been made to compare the quality of life of children with different conditions, only a few conclusions can be drawn based on such studies.9 Moreover, the existing studies have focused solely on selected subgroups such as adolescents,10-12 chil-dren with intractable/refractory epilepsy,13,14 or children who have undergone epilepsy surgery.15,16

The present prospective study was therefore designed to compare the levels of proxy-reported quality of life of chil-dren with epilepsy to those of healthy peers. This study also investigated whether there is a relationship between clini-cal factors such as age, disease course, seizure frequency or type of seizures and health-related quality of life.

Method

Participants

A total of 223 children with epilepsy from the pediatric epilepsy outpatient department were included. All were

580405 CPJXXX10.1177/0009922815580405Clinical PediatricsLiu and Hanresearch-article2015

1Qilu Hospital, Shandong University, Jinan, People’s Republic of China2Provincial Hospital Affiliated to Shandong University, Jinan, People’s Republic of China

Corresponding Author:Xinjie Liu, PhD, Department of Pediatrics, Qilu Hospital, Shandong University, No. 107 Wen Hua Xi Road, Jinan 250012, People’s Republic of China. Email: liuxinjie@sdu.edu.cn

Risk Factors on Health-Related Quality of Life in Children With Epilepsy

Xinjie Liu, PhD1 and Qizheng Han, MD2

AbstractThe goal of this study was to evaluate how epilepsy affected the health-related quality of life (HRQOL) in children with epilepsy, as well as the risk factors for poor HRQOL. Parents of epileptic children (n = 223) and parents of healthy children (n = 216) were enrolled. The Child Epilepsy Questionnaire–Parental form was given to all parents. Children with epilepsy had significantly lower HRQOL scores for overall QOL and all subscales. Seizure types were not associated with HRQOL, but the age of the child with epilepsy, disease courses and seizure frequency did influence the quality of life. Epilepsy has a severe impact on children’s HRQOL, and age, increased seizure frequency and longer duration of epilepsy are associated with poor HRQOL.

Keywordsepilepsy, child, quality of life

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diagnosed according to International League Against Epilepsy (ILAE) criteria, and the proposal from ILAE (1989) was used to classify seizure type. The children were between 4 and 18 years of age, and all had parents who were capable of completing the questionnaire.

A total of 216 healthy children matched for age, sex, degree of education, and socioeconomic status were col-lected as control group. There was no significant differ-ence in degree of education and socioeconomic status between children with epilepsy and control group.

The study was approved by the institutional ethics committee of Shandong University and the parents of each participant.

Design, Equipment, and Procedure

The Child Epilepsy Questionnaire–Parental form by Sabaz et al17 was chosen to measure epilepsy-specific health-related quality of life. The Child Epilepsy Questionnaire–Parental form has been shown to be a valid and reliable epilepsy-specific questionnaire to measure the health-related quality of life of children at the age of 4 to 18 years. We used a Chinese version previously tested psy-chometrically18,19 for which acceptable reliability and validity have been established in China (Cronbach’s α was .97, and the α values for the 16 subscales ranged from .70 to .96). The Child Epilepsy Questionnaire–Parental form consists of 76 items that are organized into 16 subscales that contain 1 to 14 items each and cover the following 7 domains of life function: physical activities, social activities, cognition, well-being, behavior, general health, and quality of life. Raw scores are transformed to a 0 to 100 scale. Higher scores indicate better health-related quality of life.20,21

Statistical Analyses

SPSS 13.0 was used for all statistical analyses. All results are presented as mean ± standard deviation. Scores between epilepsy group and controls were ana-lyzed by Mann-Whitney rank sum test. Nonparametric Kruskal-Wallis test followed by the Bonferroni-corrected Mann-Whitney U tests were performed to compare multiple groups for health-related quality of life. A Spearman correlation test was performed to deter-mine whether there was any correlation between the age of the child with epilepsy, disease course, or seizure fre-quency and health-related quality of life. A value of P < .05 was considered statistically significant.

Results

Intake Data

A total of 223 children with epilepsy (145 boys, 78 girls), aged 4 to 15 years participated in this study. The

parent-respondent demographic and clinical characteris-tics of the healthy children and the children with epi-lepsy are summarized in Tables 1 and 2.

Comparison of Scores for Health-Related Quality of Life Between Epilepsy Group and Controls

Scores for the health-related quality of life in controls and epilepsy children are listed in Table 3. Significant differences were observed between controls and the children with epilepsy for all 16 items and overall qual-ity of life.

Comparison of Health-Related Quality of Life Impairment in Children With Different Seizure Types

The influence of seizure types on health-related quality of life was investigated. Parents of children with epi-lepsy were allocated to a simple partial group, complex partial group, absence group, tonic/clonic group, and tonic-clonic group according to the seizure types of their children. We found that there was no significant differ-ence in scale scores among the 5 groups (P > .05).

The Relation of Health-Related Quality of Life Scores With Age, Disease Course, and Seizure Frequency in Children With Epilepsy

To determine the correlation between the clinical factors such as age of patient, disease course, seizure frequency, and health-related quality of life, we calculated the Spearman rank correlation within the epilepsy patient group. There was a statistically significant negative cor-relation between the health-related quality of life scores and the clinical factors of age (r = −0.305, P < .01), dis-ease course (r = −0.234, P < .01), and seizure frequency (r = −0.206, P < .01). Older age of patient, more fre-quent seizures, and longer duration of illness were all associated with lower, and therefore worse, quality of health-related quality of life scores in the present study.

Discussion

In this study, children’s health-related quality of life was rated by parental report. As expected, we found that par-ents reported lower health-related quality of life for chil-dren with epilepsy than for healthy children, which is consistent with previous results concerning health-related quality of life in children with epilepsy.9,22-24 In the present study, scores on individual subscales of the health-related quality of life in children with epilepsy were also significantly lower. The sequence of scores

1336 Clinical Pediatrics 54(14)

from low to high is as follows: social function, cognitive function, general health, behavioral function, physical function, and emotional well-being. In the social func-tion domain, children with epilepsy reported problems with limited social activities, isolation from others, and

difficulty in making friends. Epilepsy is not only a medi-cal diagnosis but also a social label. Children with epi-lepsy are treated as less “social” and less intelligent than normal children, and they tend to have limited school, professional career, and marriage prospects.2 Children with epilepsy have more cognitive problems than nor-mal children, such as trouble concentration, poor mem-ory, and language disorders. Lower general health scores indicated that lower health-related quality of life and physical health are correlated. Causes of the lower phys-ical function scores may be both role of epilepsy itself and parents’ overprotection of their children. In our study, the main behavioral deficits in children with epi-lepsy were that they were easily angered, attacked peo-ple, acted without thinking, and were independent. Our study showed that health-related quality of life of the children with epilepsy was also lower in the areas of emotional well-being compared with healthy children. Epilepsy in children can often be associated with anxi-ety, depression, and low self-esteem.

Additionally, we searched for the existence of a dif-ferential effect on health-related quality of life for age, disease course, frequency of seizures, and seizure types. Among the aforementioned factors, seizure types were not associated with health-related quality of life, while the age of the child with epilepsy, disease course, and seizure frequency did influence the quality of life.

In the present study, health-related quality of life cor-related negatively with the children’s age. This result means that older children with epilepsy appear to be more affected by the disorder than do their younger counterparts (eg, feeling that epilepsy limits social activ-ities, causes isolation, and is bad and unfair).10 Children go through profound developmental changes in biologi-cal, social, and psychological domains as they get older.25 “Normal” challenges can be described as identity forma-tion, self-definition, and achievement of indepen-dence.9,26 Mastering these challenges could be especially difficult when additionally coping with epilepsy, which could result in poorer adaptation to epilepsy later in life.9 Because of the results of the present study, it might be suggested that age is associated with poorer health-related quality of life in children with epilepsy.

It is not surprising that the longer duration of the ill-ness was associated with lower scores in health-related quality of life in children with epilepsy. As the disease course increases, illness-related stressors such as the need for frequent medical visits, the demands of a mul-ticomponent treatment regimen and an unpredictable illness course continue. Children with an increased dis-ease course in epilepsy might display more feelings of nervousness, sadness, depression, anger, and fear. In another study, it was shown that as the duration of

Table 1. Demographics for Parents of Healthy Children and Children With Epilepsy.

Epilepsy (n = 223)

Healthy (n = 216)

Parent’s gender, n (%) Male 90 (40.4) 88 (40.7) Female 133 (59.6) 128 (59.3)Age, years, mean ± SD 32 ± 8.6 32 ± 8.1Parental marriage, n (%) Married 200 (89.7) 195 (90.3) Divorced 23 (10.3) 21 (9.7)Level of education, n (%) Elementary 5 (2.2) 5 (2.3) High school 132 (59.2) 130 (60.2) University 86 (38.6) 81 (37.5)Employment, n (%) Full-time 98 (43.9) 96 (44.4) Part-time 103 (46.2) 101 (46.8) Unemployed 22 (9.9) 19 (8.8)Environment, n (%) Urban 93 (41.7) 90 (41.7) Rural 130 (58.3) 126 (58.3)

Table 2. General Clinical Data for 223 Children With Epilepsy.

Characteristics n (%)

Sex Male 125 (56.1) Female 98 (43.9)Age (4-15 years) ≤6 85 (38.1) 7-10 72 (32.3) >10 66 (29.6)Age of onset of illness, years, mean ± SD 5.5 ± 4.8Duration of illness, years, mean ± SD 2.8 ± 2.2Seizure frequency (times a month) 0 145 (65) 1-10 40 (18) >10 38 (17)Seizure types Simple partial 30 (13.5) Complex partial 56 (25.1) Absence 56 (25.1) Tonic/clonic 62 (27.8) Tonic-clonic 19 (8.5)

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illness increases in epilepsy, the family functioning scores decreased.27

Seizure frequency was a risk factor for poorer health-related quality of life in the present study. Effects of some disease parameters such as seizure control or sei-zure frequency on health-related quality of life have often been discussed. Many studies have shown a sub-stantial impact of seizure control/seizure severity on health-related quality of life, especially when groups without seizure control were compared with groups with seizure control.9,28-30

As mentioned at the beginning of the article, epilepsy is associated with a high incidence of comorbidities such as mood disturbance, cognitive problems, and learning problems. A limited number of studies have revealed a negative association of comorbidity with health-related quality of life in children with epilepsy.22 However, because we did not hand out a scale evaluat-ing the children’s comorbidities, we were not able to relate them to the scores of health-related quality of life. This may be considered as a limitation of the study.

Conclusion

The present study demonstrated that children with epi-lepsy had lower health-related quality of life than nor-mal children. Poorer health-related quality of life on the Child Epilepsy Questionnaire–Parental form was pre-dicted by older age, longer duration of epilepsy, and higher frequency of seizures. These 3 clinical factors suggest that specific features can identify children at

high risk for poor health-related quality of life. This study demonstrates that children with epilepsy, espe-cially children who are older, have a longer duration of epilepsy, and have more frequent seizures, often exhibit health-related quality of life problems that require inter-vention as early as possible.

Author Contributions

XL conceived and designed the experiments and performed the experiments. QH analyzed the data and XL wrote the paper.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial sup-port for the research, authorship, and/or publication of this article: This research was supported by the Science and Technology Project Plan of the Department of Science & Technology of Shandong Province (2010GSF10262), by the Independent Innovation Project (201004057) of the Jinan City Science and Technology Bureau, by the National Natural Science Foundation of China (81371337), and by the Special Foundation for Taishan Scholars.

References

1. Larsson K, Eeg-Olofsson O. A population based study of epilepsy in children from a Swedish county. Eur J Paediatr Neurol. 2006;10:107-113.

Table 3. Scores of the Health-Related Quality of Life Subscale for Parents of Children With and Without Epilepsy.

ScaleEpilepsy Group

(n = 223)Control Group

(n = 216) t Value

Physical restrictions 55.43 ± 17.85 75.35 ± 16.92 11.973*Energy/fatigue 60.86 ± 16.28 72.64 ± 15.35 7.883*Attention/concentration 45.56 ± 25.92 65.38 ± 10.55 15.719*Memory 52.65 ± 26.78 65.87 ± 19.83 5.891*Language 47.54 ± 26.92 65.28 ± 20.32 7.809*Other cognitive abilities 45.28 ± 25.34 64.76 ± 15.64 9.726*Depression 65.31 ± 19.36 82.32 ± 17.86 9.573*Anxiety 62.28 ± 18.32 78.64 ± 23.67 8.807*Control/helplessness 61.52 ± 16.92 73.45 ± 13.84 8.098*Self-esteem 65.56 ± 16.34 79.39 ± 12.82 9.883*Social interactions 55.28 ± 22.36 65.28 ± 12.48 5.809*Social activities 37.21 ± 27.25 68.69 ± 17.16 14.531*Stigma 53.55 ± 20.37 76.45 ± 14.29 13.671*Behavior 55.75 ± 20.26 65.77 ± 15.62 5.814*General health 50.43 ± 27.24 70.48 ± 20.95 8.661*Quality of life 55.28 ± 25.65 72.29 ± 23.56 7.240*Overall quality of life 53.66 ± 17.65 72.33 ± 14.47 12.137*

*P < .01.

1338 Clinical Pediatrics 54(14)

2. Lv R, Wu L, Jin L, et al. Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurol Scand. 2009;120:335-341.

3. Stevanovic D, Jancic J, Lakic A. The impact of depres-sion and anxiety disorder symptoms on the health-related quality of life of children and adolescents with epilepsy. Epilepsia. 2011;52:e75-e78.

4. Eklund PG, Sivberg B. Adolescents’ lived experience of epilepsy. J Neurosci Nurs. 2003;35:40-49.

5. Pellock JM. Understanding co-morbidities affecting chil-dren with epilepsy. Neurology. 2004;62(5 suppl 2):S17-S23.

6. Dunn DW, Austin JK. Differential diagnosis and treat-ment of psychiatric disorders in children and adolescents with epilepsy. Epilepsy Behav. 2004;5(suppl 3):S10-S17.

7. Aldenkamp AP, Alpherts WC, Dekker MJ, Overweg J. Neuropsychological aspects of learning disabilities in epi-lepsy. Epilepsia. 1990;31(suppl 4):S9-S20.

8. Beattie PE, Lewis-Jones MS. A comparative study of impairment of quality of life in children with skin disease and children with other chronic childhood diseases. Br J Dermatol. 2006;155:145-151.

9. Endermann M, Zimmermann F. Factors associated with health-related quality of life, anxiety and depres-sion among young adults with epilepsy and mild cogni-tive impairments in short-term residential care. Seizure. 2009;18:167-175.

10. 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;40:1715-1720.

11. Jakovljevic MB, Jankovic SM, Jankovic SV, Todorovic N. Inverse correlation of valproic acid serum concen-trations and quality of life in adolescents with epilepsy. Epilepsy Res. 2008;80:180-183.

12. Speechley KN, Ferro MA, Camfield CS, et al. Quality of life in children with new-onset epilepsy: a 2-year prospec-tive cohort study. Neurology. 2012;79:1548-1555.

13. Elliott IM, Lach L, Smith ML. I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life. Epilepsy Behav. 2005;7:664-678.

14. Sabaz M, Cairns DR, Lawson JA, Bleasel AF, Bye AM. The health-related quality of life of children with refrac-tory epilepsy: a comparison of those with and without intellectual disability. Epilepsia. 2001;42:621-628.

15. Griffiths SY, Sherman EM, Slick DJ, Eyrl K, Connolly MB, Steinbok P. Postsurgical health-related quality of life (HRQOL) in children following hemispherectomy for intractable epilepsy. Epilepsia. 2007;48:564-570.

16. Sabaz M, Lawson JA, Cairns DR. The impact of epi-lepsy surgery on quality of life in children. Neurology. 2006;66:557-561.

17. Sabaz M, Cairns DR, Lawson JA, Nheu N, Bleasel AF, Bye AM. Validation of a new quality of life measure for children with epilepsy. Epilepsia. 2000;41:765-774.

18. Li Y, Ji CY, Qin J, Zhang ZX. Parental anxiety and qual-ity of life of epileptic children. Biomed Environ Sci. 2008;21:228-232.

19. Yong L, Chengye J, Jiong Q. Factors affecting the quality of life in childhood epilepsy in China. Acta Neurol Scand. 2006;113:167-173.

20. Sabaz M, Cairns DR, Bleasel AF. The health-related qual-ity of life of children with epilepsy syndromes. J Paediatr Child Health. 2003;39:690-696.

21. Sabaz M, Lawson JA, Cairns DR. Validation of the Quality of Life in Children with Epilepsy Questionnaire in American epilepsy patients. Epilepsy Behav. 2003;4:680-691.

22. Baca CB, Vickrey BG, Caplan R, Vassar SD, Berg AT. Psychiatric and medical comorbidity and quality of life outcomes in childhood-onset epilepsy. Pediatrics. 2011;128:e1532-e1543.

23. Vega C, Guo J, Killory B, et al. Symptoms of anxiety and depression in childhood absence epilepsy. Epilepsia. 2011;52:e70-e74.

24. Wood LJ, Sherman E, Hamiwka LD, Blackman M, Wirrell E. Depression, anxiety, and quality of life in siblings of children with intractable epilepsy. Epilepsy Behav. 2008;13:144-148.

25. Baker GA. Depression and suicide in adolescents with epilepsy. Neurology. 2006;66(suppl 3):S5-S12.

26. Lossius MI, Clench-Aas J, van Roy B, Mowinckel P, Gjerstad L. Psychiatric symptoms in adolescents with epilepsy in junior high school in Norway: a population survey. Epilepsy Behav. 2006;9:286-292.

27. Pekcanlar Akay A, Hiz Kurul S, Ozek H, Cengizhan S, Emiroglu N, Ellidokuz H. Maternal reactions to a child with epilepsy: depression, anxiety, parental attitudes and family functions. Epilepsy Res. 2011;95:213-220.

28. Birbeck GL, Hays RD, Cui X, Vickrey BG. Seizure reduction and quality of life improvements in people with epilepsy. Epilepsia. 2002;43:535-538.

29. Djibuti M, Shakarishvili R. Influence of clinical, demo-graphic, and socioeconomic variables on quality of life in patients with epilepsy: findings from Georgian study. J Neurol Neurosurg Psychiatry. 2003;74:570-573.

30. Harden CL, Maroof DA, Nikolov B, et al. The effect of seizure severity on quality of life in epilepsy. Epilepsy Behav. 2007;11:208-211.

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