Correlates of quality of life with epilepsy
http://www.100md.com
《美国医学杂志》
Department of Pediatrics, Post Graduate Institute of Medical Education and Research, Chandigarh-160012, India
Abstract
OBJECTIVE: To examine the quality of life of children with epilepsy and to identify the demographic, disease related, and behavioral and emotional functioning variables in the prediction of quality of life of children with epilepsy. METHOD: Forty three children aged 4 to 15 years (Mean=10.3 years) with epilepsy were recruited from the outpatient services of the Department of Pediatrics, of a tertiary care teaching hospital in North India. Quality of life was measured by Impact of Epilepsy Schedule, a 39 items parent reported questionnaire and child's emotional and behavioral functioning at home was assessed by the Childhood Psychopathology Measurement Schedule. RESULTS: Majority of the parents expressed major concerns regarding seizures, treatment by anticonvulsants, present and future problems for the child and problems in parenting. Nearly 40% of the children had psychopathology scores in the clinically significant maladjustment range. Step-wise multiple regression analysis revealed that the psychopathology scores and mother's education accounted for 39% of the variance in the quality of life scores. CONCLUSION: Children with epilepsy have a relatively compromised quality of life and focusing simply on control of seizures may not address the full range of child's emotional and behavioral difficulties.
Keywords: Quality of life; Epilepsy; Children
Childhood epilepsy is one of the most significant and prevalent neurological conditions in the developing years. Several studies indicate that childhood epilepsy is a high risk factor for poor psychosocial outcomes, including depression and anxiety,[1] low self esteem,[2],[3],[4] behavioral problems,[4],[5],[6],[7] and academic difficulties.[8],[9]
The management of epilepsy has traditionally focused on seizure control and reduction in seizure frequency as the main goals for successful treatment. The importance of assessing psychological well being and quality of life of individuals with epilepsy, especially in children from developing countries has traditionally been ignored. In recent years, assessing quality of life with chronic illnesses has become an important concern.[10],[11]
Quality of life refers to the well being of persons in all domains of functioning including physical, psychological, social and educational.[11],[12],[13] Quality of life can be assessed by generic or disease specific measures. Generic measures assess function, disability, and distress resulting from general ill health and their main advantage is that these measures permit comparisons across illnesses, disease severity and with healthy population. However, generic measures are insensitive to the specific problems associated with each disease. Recently, number of disease specific measures have been developed for epilepsy.[14],[15],[16]
Studies examining quality of life of children and adolescents with epilepsy generally reveal that these children have impaired quality of life.[10],[14],[17],[18] For example, Austin et al[10] found that children with epilepsy have relatively more compromised quality of life in the psychological, social and school domains compared to children with asthma, suggesting that these problems are specific to epilepsy and not simply the result of living with a chronic condition. It has been argued that children with epilepsy experience significant restriction of activities leading to lower quality of life.[19]
Quality of life is an especially important health outcome to assess in children with epilepsy because they are a high risk group and in critical development period during which many cognitive and social skills have to be learned. Despite its importance, there is relative lack of research on quality of life among children with epilepsy from the developing countries. There is also little evidence about the parent's view on the effects of epilepsy on their functioning and management of their children. Keeping this in view, the present study assessed the quality of life of children with epilepsy using a epilepsy specific instrument in order to provide a basis for comprehensive treatment program for children with epilepsy and their families.
Materials and methods
Sample: Forty three children with epilepsy were recruited from the department of Pediatrics, of a tertiary care teaching hospital in North India. The age of the children ranged from 4 to 15 years with mean age of 10.28 years at the time of recruitment. All had epilepsy with a minimum duration of 6 months, were currently receiving anti - epileptic medications, had no other chronic physical illness, and had an IQ of at least 70.
Instrumentation
Quality of life: The quality of life of children with epilepsy was assessed by the Impact of Epilepsy Schedule developed by Hoare.[14] Impact of Epilepsy Schedule has 3 main sections related to the medical care and treatment of epilepsy, the child's adjustment and development, and the effects on family life. There are 39 questions in the schedule with 3 possible responses for each question: no problem, minor problem or major problem. A total score and sub scale scores can be generated by the adding the scores. Higher the scores, poorer the quality of life in that area.
Emotional and Behavioral Functioning: The child's emotional and behavioral functioning at home was assessed by the Childhood Psychopathology Measurement Schedule (CPMS)[20] which is the Indian adaptation of the Child Behavior Checklist.[21] The CPMS, is a parent reported schedule and consists of 75 problem items on which parents' rate their child on a 3 point scale, with higher scores reflecting more problems. The CPMS has eight subscales including low intelligence and behavior problems, conduct problems, somatization, anxiety and depression. The authors also recommend a cut off score of 10 and children scoring 10 and above are considered as exhibiting clinically significant level of maladjustment.
Seizures Variables: Four seizure related variables were included as independent variables in the analysis including age at onset of seizures, frequency of seizures, duration of treatment, and poly therapy. Age at onset of epilepsy was obtained from the parent in an interview and was measured to the nearest month. Seizure frequency while on anti epileptics was also obtained from the parent and placed into one of five categories ranging from seizure-free for one year or more to one or more seizure in the past one month. The duration of treatment was calculated to the nearest month from the time the child started therapy to the date of interview. Children were also placed in category of mono therapy or poly therapy based on the number of anti epileptics that they were receiving.
Results
Sample Characteristics: The sample of 43 children was predominantly male with 29 boys (67.44%) and 14 girls (32.66%) with a mean age of 10.28 years (S.D. = 2.18) . Most of the children belonged to urban (69.76%), Hindu (74.41%) families. The mean socio-economic status score was 3.16 which represented a middle class family with a mean monthly income of Rs. 8690. Fathers' and mothers' had on an average completed 11.86 (S.D. = 3.79) and 10.09 (S.D. 4.23) years of schooling, respectively. Age at onset of epilepsy ranged from 1 year of age to 13.9 years. Most (81.4%) children were receiving only one anti epileptic drug and only one child was receiving 5 anti epileptic drugs. The most frequent seizure types was partial seizures (41.9%) and generalized tonic clonic seizures were seen in 11.6%. One-third (32.55%) children had been seizure free for a year or more than one year, nearly one-fourth had been seizure free for 6 months to 1 year, and only 16% had had a seizure in the previous one month.
The mean CPMS score for the sample was 8.72 (S.D.= 6.05) and 39.5% of the children were above the clinical cut off score and scoring in the clinically significant maladjustment range.
Quality of Life: Analysis of the quality of life questionnaire revealed that parents had major concerns regarding the child's seizures. Majority expressed major concerns regarding loss of consciousness (72%), the seizure being fatal (69.7%) the seizure being a marker of a more serious disease such as a brain tumor (60.4%), incontinence during a seizure (58%), and the problems experienced by a child in breathing during a seizure (30.2%). The parents also expressed several concerns regarding the ill effects of anti epileptics drugs used in the treatment of epilepsy. Forty four percent of the parents perceived that the use of drugs for a long time was a major concern. Nearly one third of the parents expressed major concerns about anti epileptic drugs causing change in behavior or making the child less alert or able to concentrate on the task at hand. Nearly one-fourth (23.3%) of the parents also felt that the anti convulsant therapy caused change in the mood of the child.
Parents also had several concerns about the child's present and future adjustment. Thirty five percent of the parents felt their epileptic child may not turn out as clever, one-fourth of parents felt that child had behavior problems, had problems with mathematics (23.2%), and had become moody (25.5%). Problems in the future for the child especially in getting married were expressed by more than one third of parents (37.2%) and one-fourth (23.2%) were concerned about the child not getting a job in the future. However, no parent thought that seizures in any way impaired the childs ability in making friends. table1
Parents also expressed concerns about parenting their epileptic child. Thirty nine percent of the parents opined that their epileptic child needed more supervision than before from them while playing and 26.9% reported that they had problems in managing their child's behavior. The effects on the family life including social restrictions imposed due to child's illness were not marked. Most parents did not report having problems in family outings and holidays or taking their epileptic child for shopping or visiting relatives and friends. Parents also did not report having problems with friends and relatives visiting them at home. The only major concern in family life reported by parents was that having an epileptic child put an added strain on their marital relationship (41.9%).
Multiple Regression Analysis: Multiple regression analysis was performed to assess the relative role of demographic, seizure related variables, and child's emotional and behavioral functioning in predicting the quality of life scores. The child's age, sex, income, socio-economic status, father's education, mother's education, age at seizure onset, duration of treatment, number of seizures, poly therapy and psychopathology scores were included as independent variables. The total quality of life score was used as the dependent variable. The results indicated that only 2 variables, i.e., psychopathology scores and mother's education emerged as significant predictors of quality of life scores (F=13.89, p<.000). Higher psychopathology scores and lower mothers' education were associated with lower quality of life scores for children with epilepsy.
Discussion
The results of the study confirm and extend the previous findings in the literature indicating poor quality of life of children with epilepsy. Parents reported several major concerns about the child's seizures, use of anticonvulsants, child's present and future functioning, and adjustment problems. Studies from developing countries have reported more negative attitudes and stigma about epilepsy as compared to the developed countries.[22],[23],[24],[25] For example, Gambhir et al[22] found that 15% of respondents believed epilepsy to be a form of insanity, 40% believed that children with epilepsy should not go to school and 66% objected to their children marrying someone who ever had epilepsy. It has been argued that parental adjustment is important as it influences the outcomes both for the epileptic child and the family.[25]
The high prevalence of emotional and behavioral problems in children in the study is consistent with results of previous studies which have compared children with epilepsy with children with other chronic conditions or normal healthy controls. For example, compared to children with diabetes, children with epilepsy perceived events in their world as out of control,[26] and were reported to be immature, emotionally distressed and rejected by others.[27] In comparison to children with learning disabilities, children with epilepsy were found to be more anxious and dissatisfied,[2] and had lower self concept, and had more depression and behavior problems than children with asthma.[28] Rutter et al[30] in their classic study reported that the incidence of psychiatric problems for children with epilepsy was higher than that for children with other physical conditions and up to 53% of children with epilepsy and other neurological problems had behavioral and psychiatric problems.
The results further indicate that child's impaired behavioral and emotional functioning had a negative impact on many aspects of the life of the child and parent's perception of child's quality of life. Although two seizure related variables, i.e, duration of treatment and number of anticonvulsants used, were found to be significantly correlated with quality of life of children with epilepsy, the multiple regression analysis revealed that none of the seizure related variables were significant predictors of quality of life of children with epilepsy. However, child's emotional and behavioral functioning at home and education of the mother explained significant amount of variance in the quality of life scores of children. Previous studies have also shown that relationship between seizure variables such as seizure frequency and severity have only moderate correlations with quality of life.[30]
It is clear that child's impaired and behavioral and emotional functioning has a negative impact on the many aspects of the life of the child and parent's perception of child's quality of life. Other investigators have examined risk factors predicting psychosocial dysfunction in children with epilepsy. For example, Hoare[14] studied a group of epileptic children and their families in an attempt to identify the factors associated with psychological disturbance in the child, maternal fears about epilepsy, and quality of life of children with epilepsy as a step towards developing a program to treat children with epilepsy and their families. Adverse impact of epilepsy in three main areas were found including the management of epilepsy, deleterious effects on child's adjustment and the restrictions on family life and activities. In another study, Austin et al[10] compared the quality of life of children with epilepsy with children with asthma. The authors reported that children with epilepsy had a more compromised quality of life in the psychological, social and school domains. Research indicates that chronic conditions involving the brain are associated with more psychopathology than chronic conditions not involving the brain.[29]
Findings from our study indicate that attention to emotional and behavioral functioning is important in the clinical management of children with epilepsy. The finding that children experiencing emotional and behavioral problems tended to have poorer quality of life suggests that interventions designed to address behavioral and emotional problems in children with epilepsy should be an important management goal. Our findings further suggest that quality of life should be an important outcome measure in management of children with epilepsy and attention simply to seizure control or seizure reduction in the clinical setting would not address the full range of problems being experienced by children with epilepsy.
References
1. Ettinger AB, Weisbrot DM, Nolan EE, Gadow KD, Vitale SA, Andriola MR et al. Symptoms of depression and anxiety in pediatric epilepsy patients. Epilepsia 1998; 36: 595-599.
2. Margalit M, Heiman T. Anxiety and self-dissatisfaction in epileptic children. Int J Soc Psychiatry 1983; 29: 220-224.
3. Austin JK. Comparison of child adaptation to epilepsy and asthma. J Child Adolesc Psychiatr Ment Health Nurs 1989; 2: 139-144.
4. Malhi P, Singhi P. Effects of family functioning on psychosocial adaptation in children with epilepsy. J Dev Beh Pediatr 1999; 20: 401.
5. Scott DF. Psychiatric aspects of epilepsy. Br J Psychiatry 1978; 132: 417-430.
6. Austin JK, Risinger MW, Beckett LA. Correlates of behavior problems in children with epilepsy. Epilepsia 1992; 33: 1115-1122.
7. Pianta RC, Lothman D. Predicting behavior problems in children with epilepsy: Child factors, disease factors, family stress and child-mother interaction. Child Deve 1994; 65: 1415-1428.
8. Seidenberg M, Beck N, Geisser M, Giordani B, Sackellares JC, Berenet S et al. Academic achievement of children with epilepsy. Epilepsia 1986; 27: 753-759.
9. Sturniolo MG, Galleti F. Idiopathic epilepsy and school achievement. Arch Dis Child 1994; 70: 424-428.
10. Austin JK, Smith MS, Risinger MW, McNelis AM. Childhood epilepsy and asthma: Comparison of quality of life. Epilepsia 1994; 35: 608-615.
11. Testa MA, Simonson DC. Assessment of quality of life outcomes. N Engl J Med 1996; 336: 835-840.
12. Lehman AF. The well being of chronic mental patients. Arch Gen Psychiatry 1983; 40: 369-373.
13. Duncan J. Medical factors affecting quality of life in patients with epilepsy. In Chadwick D, ed. Quality of Life and Quality of Care in Epilepsy; Oxford: Alden Press, 1990.
14. Hoare P. The quality of life of children with chronic epilepsy and their families. Seizure 1993; 2: 269-275.
15. Sabaz M, Cairns DR, Lawson JA, Nheu N, Bleasel AF, Bye AME. Validation of a new quality of life measure for children with epilepsy. Epilepsia 2000; 41: 765-774.
16. Cramer JA, Camfield C, Carpay H, Helmstaedter C, Langfitt J, Malmgren K et al. Principles of health-related quality of life: Assessment in clinical trials. Epilepsia 2002; 43: 1084-1095.
17. 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.
18. Sherman EMS, Slick DJ, Connolly MB, Steinbok P, Camfield C, Eyrl KL et al. Validity of three measures of health-related quality of life in children with intractable epilepsy. Epilepsia 2002; 43: 1230-1238.
19. Carpay HA, Vermeulen J, Stroink H, Brouwer OF, Peters AC, Van Donselaar C et al. Disability due to restrictions in childhood epilepsy. Dev Med Child Neurol 1997; 39: 521-526.
20. Malhotra S, Varma VK, Verma SK, Malhotra A. A childhood psychopathology measurement schedule: Development and standardization. Indian J Psychiatry 1988; 30: 325-332.
21. Achenbach TM, Edelbrock CS. Manual for the child behavior checklist and revised child behavior profile. Burlington: University of Vermont, 1983.
22. Gambhir SK, Kumar V, Singhi PD, Goel RC. Public awareness, understanding and attitudes towards epilepsy. Indian J Med Res 1995; 102: 34-38.
23. Chung MY, Chang YC, Lai YH, Lai CW. Survey of public awareness, understanding and attitudes towards epilepsy in Taiwan. Epilepsia 1995; 36: 488-493.
24. Pal DK, Chaudhury G, Sengupta S, Das T. Social integration of children with epilepsy in rural India. Soc Sci Med 2002; 54: 1867-1874.
25. Pal DK, Chaudhury G, Das T, Sengupta S. Predictors of parental adjustment to children's epilepsy in rural India. Child Care Health Dev 2002; 28: 295-300.
26. Mathews WS, Barabas G, Ferrari M. Emotional concomitants of childhood epilepsy. Epilepsia 1982; 23: 671-681.
27. Ferrari M, Mathews WS, Barabas G. The family and the child with epilepsy. Fam Process 1983; 22: 53-59.
28. Austin JK. Childhood epilepsy: child adaptation and family resources. J Child Adolesc Psychiatr. Ment Health Nurs 1988; 1: 18-24.
29. Rutter M, Graham P, Yule W. A neuropsychiatric study in childhood. Clin Dev Med 1970; 3: 35-36.
30. Ronen GM, Streiner DL, Rosenbaum P, Canadian Pediatric Epilepsy network. Health related quality of life in children with epilepsy. Development and validation of self-report and parent proxy measures. Epilepsia 2003; 44: 598-612.(Malhi Prahbhjot, Singhi P)
Abstract
OBJECTIVE: To examine the quality of life of children with epilepsy and to identify the demographic, disease related, and behavioral and emotional functioning variables in the prediction of quality of life of children with epilepsy. METHOD: Forty three children aged 4 to 15 years (Mean=10.3 years) with epilepsy were recruited from the outpatient services of the Department of Pediatrics, of a tertiary care teaching hospital in North India. Quality of life was measured by Impact of Epilepsy Schedule, a 39 items parent reported questionnaire and child's emotional and behavioral functioning at home was assessed by the Childhood Psychopathology Measurement Schedule. RESULTS: Majority of the parents expressed major concerns regarding seizures, treatment by anticonvulsants, present and future problems for the child and problems in parenting. Nearly 40% of the children had psychopathology scores in the clinically significant maladjustment range. Step-wise multiple regression analysis revealed that the psychopathology scores and mother's education accounted for 39% of the variance in the quality of life scores. CONCLUSION: Children with epilepsy have a relatively compromised quality of life and focusing simply on control of seizures may not address the full range of child's emotional and behavioral difficulties.
Keywords: Quality of life; Epilepsy; Children
Childhood epilepsy is one of the most significant and prevalent neurological conditions in the developing years. Several studies indicate that childhood epilepsy is a high risk factor for poor psychosocial outcomes, including depression and anxiety,[1] low self esteem,[2],[3],[4] behavioral problems,[4],[5],[6],[7] and academic difficulties.[8],[9]
The management of epilepsy has traditionally focused on seizure control and reduction in seizure frequency as the main goals for successful treatment. The importance of assessing psychological well being and quality of life of individuals with epilepsy, especially in children from developing countries has traditionally been ignored. In recent years, assessing quality of life with chronic illnesses has become an important concern.[10],[11]
Quality of life refers to the well being of persons in all domains of functioning including physical, psychological, social and educational.[11],[12],[13] Quality of life can be assessed by generic or disease specific measures. Generic measures assess function, disability, and distress resulting from general ill health and their main advantage is that these measures permit comparisons across illnesses, disease severity and with healthy population. However, generic measures are insensitive to the specific problems associated with each disease. Recently, number of disease specific measures have been developed for epilepsy.[14],[15],[16]
Studies examining quality of life of children and adolescents with epilepsy generally reveal that these children have impaired quality of life.[10],[14],[17],[18] For example, Austin et al[10] found that children with epilepsy have relatively more compromised quality of life in the psychological, social and school domains compared to children with asthma, suggesting that these problems are specific to epilepsy and not simply the result of living with a chronic condition. It has been argued that children with epilepsy experience significant restriction of activities leading to lower quality of life.[19]
Quality of life is an especially important health outcome to assess in children with epilepsy because they are a high risk group and in critical development period during which many cognitive and social skills have to be learned. Despite its importance, there is relative lack of research on quality of life among children with epilepsy from the developing countries. There is also little evidence about the parent's view on the effects of epilepsy on their functioning and management of their children. Keeping this in view, the present study assessed the quality of life of children with epilepsy using a epilepsy specific instrument in order to provide a basis for comprehensive treatment program for children with epilepsy and their families.
Materials and methods
Sample: Forty three children with epilepsy were recruited from the department of Pediatrics, of a tertiary care teaching hospital in North India. The age of the children ranged from 4 to 15 years with mean age of 10.28 years at the time of recruitment. All had epilepsy with a minimum duration of 6 months, were currently receiving anti - epileptic medications, had no other chronic physical illness, and had an IQ of at least 70.
Instrumentation
Quality of life: The quality of life of children with epilepsy was assessed by the Impact of Epilepsy Schedule developed by Hoare.[14] Impact of Epilepsy Schedule has 3 main sections related to the medical care and treatment of epilepsy, the child's adjustment and development, and the effects on family life. There are 39 questions in the schedule with 3 possible responses for each question: no problem, minor problem or major problem. A total score and sub scale scores can be generated by the adding the scores. Higher the scores, poorer the quality of life in that area.
Emotional and Behavioral Functioning: The child's emotional and behavioral functioning at home was assessed by the Childhood Psychopathology Measurement Schedule (CPMS)[20] which is the Indian adaptation of the Child Behavior Checklist.[21] The CPMS, is a parent reported schedule and consists of 75 problem items on which parents' rate their child on a 3 point scale, with higher scores reflecting more problems. The CPMS has eight subscales including low intelligence and behavior problems, conduct problems, somatization, anxiety and depression. The authors also recommend a cut off score of 10 and children scoring 10 and above are considered as exhibiting clinically significant level of maladjustment.
Seizures Variables: Four seizure related variables were included as independent variables in the analysis including age at onset of seizures, frequency of seizures, duration of treatment, and poly therapy. Age at onset of epilepsy was obtained from the parent in an interview and was measured to the nearest month. Seizure frequency while on anti epileptics was also obtained from the parent and placed into one of five categories ranging from seizure-free for one year or more to one or more seizure in the past one month. The duration of treatment was calculated to the nearest month from the time the child started therapy to the date of interview. Children were also placed in category of mono therapy or poly therapy based on the number of anti epileptics that they were receiving.
Results
Sample Characteristics: The sample of 43 children was predominantly male with 29 boys (67.44%) and 14 girls (32.66%) with a mean age of 10.28 years (S.D. = 2.18) . Most of the children belonged to urban (69.76%), Hindu (74.41%) families. The mean socio-economic status score was 3.16 which represented a middle class family with a mean monthly income of Rs. 8690. Fathers' and mothers' had on an average completed 11.86 (S.D. = 3.79) and 10.09 (S.D. 4.23) years of schooling, respectively. Age at onset of epilepsy ranged from 1 year of age to 13.9 years. Most (81.4%) children were receiving only one anti epileptic drug and only one child was receiving 5 anti epileptic drugs. The most frequent seizure types was partial seizures (41.9%) and generalized tonic clonic seizures were seen in 11.6%. One-third (32.55%) children had been seizure free for a year or more than one year, nearly one-fourth had been seizure free for 6 months to 1 year, and only 16% had had a seizure in the previous one month.
The mean CPMS score for the sample was 8.72 (S.D.= 6.05) and 39.5% of the children were above the clinical cut off score and scoring in the clinically significant maladjustment range.
Quality of Life: Analysis of the quality of life questionnaire revealed that parents had major concerns regarding the child's seizures. Majority expressed major concerns regarding loss of consciousness (72%), the seizure being fatal (69.7%) the seizure being a marker of a more serious disease such as a brain tumor (60.4%), incontinence during a seizure (58%), and the problems experienced by a child in breathing during a seizure (30.2%). The parents also expressed several concerns regarding the ill effects of anti epileptics drugs used in the treatment of epilepsy. Forty four percent of the parents perceived that the use of drugs for a long time was a major concern. Nearly one third of the parents expressed major concerns about anti epileptic drugs causing change in behavior or making the child less alert or able to concentrate on the task at hand. Nearly one-fourth (23.3%) of the parents also felt that the anti convulsant therapy caused change in the mood of the child.
Parents also had several concerns about the child's present and future adjustment. Thirty five percent of the parents felt their epileptic child may not turn out as clever, one-fourth of parents felt that child had behavior problems, had problems with mathematics (23.2%), and had become moody (25.5%). Problems in the future for the child especially in getting married were expressed by more than one third of parents (37.2%) and one-fourth (23.2%) were concerned about the child not getting a job in the future. However, no parent thought that seizures in any way impaired the childs ability in making friends. table1
Parents also expressed concerns about parenting their epileptic child. Thirty nine percent of the parents opined that their epileptic child needed more supervision than before from them while playing and 26.9% reported that they had problems in managing their child's behavior. The effects on the family life including social restrictions imposed due to child's illness were not marked. Most parents did not report having problems in family outings and holidays or taking their epileptic child for shopping or visiting relatives and friends. Parents also did not report having problems with friends and relatives visiting them at home. The only major concern in family life reported by parents was that having an epileptic child put an added strain on their marital relationship (41.9%).
Multiple Regression Analysis: Multiple regression analysis was performed to assess the relative role of demographic, seizure related variables, and child's emotional and behavioral functioning in predicting the quality of life scores. The child's age, sex, income, socio-economic status, father's education, mother's education, age at seizure onset, duration of treatment, number of seizures, poly therapy and psychopathology scores were included as independent variables. The total quality of life score was used as the dependent variable. The results indicated that only 2 variables, i.e., psychopathology scores and mother's education emerged as significant predictors of quality of life scores (F=13.89, p<.000). Higher psychopathology scores and lower mothers' education were associated with lower quality of life scores for children with epilepsy.
Discussion
The results of the study confirm and extend the previous findings in the literature indicating poor quality of life of children with epilepsy. Parents reported several major concerns about the child's seizures, use of anticonvulsants, child's present and future functioning, and adjustment problems. Studies from developing countries have reported more negative attitudes and stigma about epilepsy as compared to the developed countries.[22],[23],[24],[25] For example, Gambhir et al[22] found that 15% of respondents believed epilepsy to be a form of insanity, 40% believed that children with epilepsy should not go to school and 66% objected to their children marrying someone who ever had epilepsy. It has been argued that parental adjustment is important as it influences the outcomes both for the epileptic child and the family.[25]
The high prevalence of emotional and behavioral problems in children in the study is consistent with results of previous studies which have compared children with epilepsy with children with other chronic conditions or normal healthy controls. For example, compared to children with diabetes, children with epilepsy perceived events in their world as out of control,[26] and were reported to be immature, emotionally distressed and rejected by others.[27] In comparison to children with learning disabilities, children with epilepsy were found to be more anxious and dissatisfied,[2] and had lower self concept, and had more depression and behavior problems than children with asthma.[28] Rutter et al[30] in their classic study reported that the incidence of psychiatric problems for children with epilepsy was higher than that for children with other physical conditions and up to 53% of children with epilepsy and other neurological problems had behavioral and psychiatric problems.
The results further indicate that child's impaired behavioral and emotional functioning had a negative impact on many aspects of the life of the child and parent's perception of child's quality of life. Although two seizure related variables, i.e, duration of treatment and number of anticonvulsants used, were found to be significantly correlated with quality of life of children with epilepsy, the multiple regression analysis revealed that none of the seizure related variables were significant predictors of quality of life of children with epilepsy. However, child's emotional and behavioral functioning at home and education of the mother explained significant amount of variance in the quality of life scores of children. Previous studies have also shown that relationship between seizure variables such as seizure frequency and severity have only moderate correlations with quality of life.[30]
It is clear that child's impaired and behavioral and emotional functioning has a negative impact on the many aspects of the life of the child and parent's perception of child's quality of life. Other investigators have examined risk factors predicting psychosocial dysfunction in children with epilepsy. For example, Hoare[14] studied a group of epileptic children and their families in an attempt to identify the factors associated with psychological disturbance in the child, maternal fears about epilepsy, and quality of life of children with epilepsy as a step towards developing a program to treat children with epilepsy and their families. Adverse impact of epilepsy in three main areas were found including the management of epilepsy, deleterious effects on child's adjustment and the restrictions on family life and activities. In another study, Austin et al[10] compared the quality of life of children with epilepsy with children with asthma. The authors reported that children with epilepsy had a more compromised quality of life in the psychological, social and school domains. Research indicates that chronic conditions involving the brain are associated with more psychopathology than chronic conditions not involving the brain.[29]
Findings from our study indicate that attention to emotional and behavioral functioning is important in the clinical management of children with epilepsy. The finding that children experiencing emotional and behavioral problems tended to have poorer quality of life suggests that interventions designed to address behavioral and emotional problems in children with epilepsy should be an important management goal. Our findings further suggest that quality of life should be an important outcome measure in management of children with epilepsy and attention simply to seizure control or seizure reduction in the clinical setting would not address the full range of problems being experienced by children with epilepsy.
References
1. Ettinger AB, Weisbrot DM, Nolan EE, Gadow KD, Vitale SA, Andriola MR et al. Symptoms of depression and anxiety in pediatric epilepsy patients. Epilepsia 1998; 36: 595-599.
2. Margalit M, Heiman T. Anxiety and self-dissatisfaction in epileptic children. Int J Soc Psychiatry 1983; 29: 220-224.
3. Austin JK. Comparison of child adaptation to epilepsy and asthma. J Child Adolesc Psychiatr Ment Health Nurs 1989; 2: 139-144.
4. Malhi P, Singhi P. Effects of family functioning on psychosocial adaptation in children with epilepsy. J Dev Beh Pediatr 1999; 20: 401.
5. Scott DF. Psychiatric aspects of epilepsy. Br J Psychiatry 1978; 132: 417-430.
6. Austin JK, Risinger MW, Beckett LA. Correlates of behavior problems in children with epilepsy. Epilepsia 1992; 33: 1115-1122.
7. Pianta RC, Lothman D. Predicting behavior problems in children with epilepsy: Child factors, disease factors, family stress and child-mother interaction. Child Deve 1994; 65: 1415-1428.
8. Seidenberg M, Beck N, Geisser M, Giordani B, Sackellares JC, Berenet S et al. Academic achievement of children with epilepsy. Epilepsia 1986; 27: 753-759.
9. Sturniolo MG, Galleti F. Idiopathic epilepsy and school achievement. Arch Dis Child 1994; 70: 424-428.
10. Austin JK, Smith MS, Risinger MW, McNelis AM. Childhood epilepsy and asthma: Comparison of quality of life. Epilepsia 1994; 35: 608-615.
11. Testa MA, Simonson DC. Assessment of quality of life outcomes. N Engl J Med 1996; 336: 835-840.
12. Lehman AF. The well being of chronic mental patients. Arch Gen Psychiatry 1983; 40: 369-373.
13. Duncan J. Medical factors affecting quality of life in patients with epilepsy. In Chadwick D, ed. Quality of Life and Quality of Care in Epilepsy; Oxford: Alden Press, 1990.
14. Hoare P. The quality of life of children with chronic epilepsy and their families. Seizure 1993; 2: 269-275.
15. Sabaz M, Cairns DR, Lawson JA, Nheu N, Bleasel AF, Bye AME. Validation of a new quality of life measure for children with epilepsy. Epilepsia 2000; 41: 765-774.
16. Cramer JA, Camfield C, Carpay H, Helmstaedter C, Langfitt J, Malmgren K et al. Principles of health-related quality of life: Assessment in clinical trials. Epilepsia 2002; 43: 1084-1095.
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