Epilepsia. 37(Suppl 3):28-32, 1996 Lippincott-Raven Publishers, Philadelphia 0 International League Against Epilepsy

Quality of Life

Symposium I

in Children with Epilepsy

Toshio Hanai

Department of Pediatric Neurology, Fukuoka Children’s Hospital Medical Center, Fukuoka, Japan

Summary: To study quality of life in school children with epilepsy, we surveyed families of 443 elementary and ju- nior high school children with epilepsy, as well as their school teachers. Approximately 80% responded. Seizures were controlled in 70% of the children. Of the children with epilepsy, 27% received education for disturbed chil- dren. Main family concerns were the future of their child, seizures, and school performance. Main concerns of the children were medication and seizures. The majority of both families and teachers agreed that children should participate in all physical education and school events based on individual considerations. Many teachers ex-

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pressed the opinion that correct information about epi- lepsy and close communication between teachers and phy- sicians are necessary. To establish comprehensive medi- cal care that satisfies the needs of children with epilepsy and their fa’milies, further training of medical specialists in epilepsy, establishment of more hospitals specializing in epilepsy, and enhancment of the network among relevant organizations are needed. For children with intractable epilepsy, special considerations include associated handi- caps and antiepileptic drug side effects. Key Words: Ado- lescence-Childhood-Epilepsy seizures-Outcome as- sessment-Quality of life-Social adjustment.

The general understanding of epilepsy has been enhanced by the efforts of concerned people. How- ever, prejudice and misunderstanding still exist, and the current situation is still unsatisfactory. Tech- niques for diagnosis and treatment of epilepsy have significantly advanced, but improving the quality of life for children with epilepsy remains an import- ant problem.

Social attitudes toward and the quality of life for children with epilepsy in Japan have been studied (1-3).

The main areas of life in childhood involve home and school. In considering the quality of life in chil- dren with epilepsy, it thus appears appropriate to investigate the thoughts of the families of children with epilepsy and of schoolteachers about epilepsy. To clarify the current status and problems in daily life for children with epilepsy, the degree to which epilepsy is understood by their families and school- teachers, and the need for medical care, a question- naire was distributed to families of children with epilepsy and their schoolteachers. In this study, we

Address correspondence and reprint requests to Dr. T. Hanai at the Department of Pediatric Neurology, Fukuoka Children’s Hospital Medical Center, 2-5-1 Tojin-machi, Chuo-ku, Fukuoka 810. Japan.

examined problems and suggestions for improving the quality of life in children with epilepsy based on responses to the questionnaire survey.

SUBJECTS AND METHODS

To study home life, we distributed a questionnaire to families of elementary and junior high school chil- dren with epilepsy who were receiving medical treat- ment at the outpatient clinic of the Department of Pediatric Neurology, Fukuoka City Children’s Hos- pital. We handed questionnaires to the parents at the time of consultation in the outpatient clinic and had the questionnaires returned by mail without a name. Responses were collected from the families of 344 (77.7%) of 443 elementary and junior high school children. Of these children, 252 (73%) chil- dren attended ordinary classes, whereas 92 (27%) children received education for disturbed children in special classes or schools.

To study school life, questionnaires were distrib- uted to elementary and junior high school teachers in two of seven wards of Fukuoka City and to teach- ers in all schools for handicapped children in Fuku- oka City with the cooperation of the Fukuoka City Educational Committee, and were collected 1 week later. Responses were obtained from 1,808 (79.5%)

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QUALITY OF LIFE IN CHILDREN WITH EPILEPSY 29

of 2,274 teachers, of whom 1,537 (85%) were elemen- tary and junior high school teachers and 271 (15%) taught in schools for handicapped children.

The x 2 test was used to analyze for significant differences between groups.

RESULTS

The seizures The interval from initial seizure onset to study

date was <5 years in 48% of the children, and 2 5 years in 52%. In the group attending ordinary classes (group A), 40% had epilepsy for 2 5 years. In the group receiving education for disturbed children in special classes or schools for handicapped children (group B), 86% had epilepsy for 2 5 years.

Seizures had not occurred for > I year in 70% of the children (77% of group A and 50% of group B). The percentage of children with daily seizures was 0 and 18% in groups A and B, a statistically significant difference. The findings suggested that intractable seizures were more frequent among children with associated handicaps.

Problems as perceived by the children themselves and their families

The major concerns of families regarding their children were “the future” and “seizures.” Higher rates of concern regarding “forget to take medicine” and “school records” were noted in group A than in group B. Higher rates of concern for the future, “health conditions other than seizures” and “rela- tionship with brothers and sisters” were noted in group B than in group A.

The parents’ impression of the children’s suffering and concerns regarding epilepsy was “maybe noth- ing special” by more than half in both group A (52%) and group B (59%). Other common answers were “taking medicine every day” (29%) and “onset of seizures” (14%). The most common answer in group A was “taking medicine every day” (36%). In group B, 18% responded, “There may be suffering,( but I do not know.”

Regarding the character and behavior characteris- tics of children with epilepsy, many answered, “I do not think there are such characteristics or behav- iors,” but 9% of teachers and 29% of families an- swered “I think there are.” Of those answering “I think there are,” the major comments from teachers included “being restless,” “taking frequent naps,” and “being fickle,” whereas families responded “being restless,” “being persistent,” “being short- tempered” and “being exact.” Although we cannot say that some of these items are specific to children with epilepsy, some of the items appeared to be

associated with seizure intractability, associated handicaps, seizures frequency, or side effects of antiepileptic drugs (AEDs).

In group A, the extent to which families explained the epilepsy to the children was “explain in detail” (26%), “explain a little” (23%), and “explain only that seizures occurred” (3 1 %). In group B, ‘‘explain in detail” was done by 11%, and “explain a little” was done by 17%, but 63% indicated “others,” which was associated with the reason, “children cannot understand even if families explain.”

School problems The most common answer about school life prob-

lems and concerns for families of children with epi- lepsy was “nothing special” (67% of total) and “can- not keep up with learning” (21% of total). In group A, answers including “cannot keep up with learn- ing,” “difficulty in making friends,” and “easily tormented” were frequent responses. In group B, “seizures may occur at school” and “frequently requiring a nap” were more frequent responses com- pared with group A (Table 1).

In group A, 76% of children had “no seizures at school,” 12% had seizures “one time,” and 3% had seizures “10 times or more.” In group B, 61% had “no seizures at school,” whereas 22% had seizures “10 times or more,” a higher percentage than that in group A.

Schools were informed of the name of the child’s disease by 91% of group B families but by only 48% of group A families. Among the reasons for families not informing schools of the name of the child’s disease, “prejudices and discrimination may occur” was common among both teachers and families. In addition, “affecting the child’s future,” “physical education and participation in school events are re- strained,” “privacy would be infringed,” and “con- fidentiality is insufficient” were noted by many fam- ilies.

For participation in physical education and school events, “if seizures can be controlled, children should participate in all activities under individual considerations” was the response of 55% of teachers and 60% of families. The response “regardless of whether seizures are controlled, children should par- ticipate in all activities under individual considera- tions” was given by more families than teachers, and this response was more frequent among teachers in schools for handicapped children, and among group B families. “Even if seizures can be con- trolled, prohibition is necessary for some sports such as swimming” was the response from a large number of teachers (Table 2).

T. HANAI

TABLE 1. School problems and concerns for families of children with epilepsy

Overall (n = 344)

Ordinary class (n = 251)

Special class and school for handicapped children

(n = 93)

Cannot keep up with learning Difficulty making friends Easily tormented Seizures may occur at school Taking naps frequently Dislike school Others Nothing special

73 (21%) 30 (9%) 26 (8%) 20 (6%) 17 (5%) 8 (2%)

11 (3%) 231 (67%)

56 (22%) 24 (10%) 22 (9%) 10 (4%) 7 (3%) 7 (3%) 9 (4%)

171 (68%)

17 (18%) 6 (6%) 4 (4%)

10 ( 1 I%)(‘ 10 ( I l % ) b

l ( I % ) 2 (2%)

60 (65%)

Multiple answers were possible. “ p < 0.05.

p < 0.01.

Medical problems Information from physicians to families before ini-

tiation of treatment was rated as “sufficiently in- formed” by 35% of the total, “generally informed” by 51%, and “I think it was insufficient” by 5%. The rate of “I think it was insufficient” was 11% in group B, 6% higher than that in group A.

For currently prescribed AEDs, “know the name and dosage” was the response of 68% overall and “know the name” the response of 17%. The answer, “do not know though I was informed” was given by 17% of group A compared with 3% of group B.

For treatment, “taking medicines without fail” was the response of 75% of group B, higher than the 60% response in group A. “Forget several times a year” was the response of 28% of group A, a higher rate than 14% response of group B. Seizures that were thought to occur because of poor compli- ance were noted by 15% of group A and 34% of group B and appeared to be associated with sei- zure frequency.

In response to the question, “What do you think

of antiepileptic drugs?”, “children should regularly take medicine as prescribed by the physician” was the response of 77% of families, which differed sig- nificantly from the 20% response of teachers. “Do not know” was the response of 53% of teachers. “Children should take adequate medicine according to the families’ judgment” was the response of 10% of teachers but of none of the families (Table 3 ) .

Concerning services at Fukuoka City Children’s Hospital, “nothing special” was the response of 51%, the highest percentage, followed by “problems in parking,” with this response particularly high in group B. Other answers included “long waiting time,” “seizures do not disappear,” and “cannot talk sufficiently with the attending physician.”

With regard to requests for medical care, “nothing special” was noted by 57% of families. Among teachers, “want to be guided in the correct knowl- edge and treatment for seizures” and “a close con- nection between teachers and physicians is neces- sary” were common responses. In the “other” cate- gory, opinions expressed included “reflecting on the

TABLE 2. What do you think of participation in physical education and school events?

Teachers

Elementary and junior School for high school handicapped children

Regardless of whether seizures are controlled, children should participate in all activities based on individual considerations

If seizures can be controlled, children should participate in all activities based on individual considerations

sports, such as swimming, even if seizures can be controlled

Prohibition is necessary for some

Do not know Other

Total

302 (20%) 91 (34%)0

849 (55%) 147 (54%)

145 (9%) 17 (6%)

213 (14%)“ 14 (5%) 23 (2%) 1 (0%)

1,532 persons 270 persons

Families

Special class and school for

59 (24%) 35 (38%)“

Ordinary class handicapped children

162 (65%)” 42 (46%)

7 (3%) 3 (3%)

21 (8%) 10 (11%) 2 (1%) l ( l % )

251 persons 91 persons

QUALITY OF LIFE IN CHILDREN WITH EPILEPSY

TABLE 3. What do you think of antiepileptic drugs?

31

Families Teachers

Special class and Elementary and junior School for school for

high school handicapped children Ordinary class handicapped children

Children should regularly take medicines as prescribed by the physican

If the severity of seizures is mild, doses might not be increased

Children should take adequate medicines according to the families’ judgment

Children might not need to take medicines

No opinion Do not know Other

Total

245 (16%)

96 (6%)

147 (10%)

47 (3%)

106 (7%)“ 886 (58%)”

2 (0%) 1,529 persons

123 (46%)”

38 (14%)”

29 (11%)

11 (4%)

4 (2%) 65 (24%) 0 (0%)

270 persons

192 (77%)

9 (4%)

0 (0%)

6 (2%)

17 (7%) 25 (10%) 0 (0%)

249 persons

69 (76%)

11 (12%)”

0 (0%)

0 (0%)

4 (4%) 6 (7%) 1 ( 1 % )

91 persons

p < 0.01.

deficit in my knowledge,” “we need to learn by ourselves,” and “training and education regarding epilepsy during the training curriculum for school teachers are required” (Table 4).

DISCUSSION

Surveys of societal attitudes toward epilepsy have been reported from various countries (4-6). In some reports, childhood epilepsy alone was studied, and societal attitudes regarding children with epilepsy and the quality of life of these children were investi- gated (1-3,7). Few of the reports have used a ques- tionnaire survey simultaneously administered to families of children with epilepsy and schoolteachers or explored differences in attitudes between teach- ers from regular and special schools.

Based on results of our survey, topics and recom-

TABLE 4. Request for medical care from teachers and families

Teachers Families 1,807 persons 344 persons

Guidance in the correct 1,178 (65%)” 89 (26%) knowledge and treatment for seizures

teachers and physicians is necessary

help for children, with epilepsy and their families

More effort should be made to abolish prejudices and misunderstanding

Close connection between 668 (37%)(’ 45 (13%)

Enhancement of guidance and 296 (16%)‘ 31 (9%)

236 (1 3%) 52 ( 1 5%)

Nothing special 347 (19%) 197 (57%)” Other 60 (3%)” 2 (1%)

Multiple answers were possible. O p < 0.01.

mendations were examined for improving the quality of life for children with epilepsy. Recognizing previ- ous efforts, we consider correct knowledge of epi- lepsy and education as very important. It is neces- sary to propagate accurate knowledge regarding epi- lepsy to all professional groups that relate to children with epilepsy, as well as to the general public, in an effort to abolish prejudice and misunderstanding about epilepsy.

The number of children with epilepsy receiving education for disturbed children in special classes or schools for handicapped children (group B) in our study was 27%. From the responses regarding treatment period and seizure frequency, it appeared that epilepsy severity was clearly higher in group B, compared with children with epilepsy who attended ordinary class (group A). Perhaps for this reason, the number of schools informed of the name of the child’s disease was also higher in group B, and un- derstanding of the need for AEDs and compliance with treatment were good in group B. However, seizure incidence as a result of poor compliance was also high in group B.

For participation in physical education and school events, the response, “if seizures can be controlled, children should participate in all activities under in- dividual considerations” was given by more than half of both families and teachers, followed by the response that “regardless of whether seizures are controlled, children should participate in all activi- ties under individual considerations.” This suggests a better understanding of epilepsy has been estab- lished.

More than a few schoolteachers were anxious about epileptic seizures in school children (1,2). From the results of our survey, teachers in schools

Epilepsia, Vol. 37, Suppl . 3, 1996

32 T. HANAI

for handicapped children appeared to have more knowledge of epilepsy and seizures than teachers in ordinary elementary and junior high schools, be- cause they usually had more contact with children with epilepsy and had received training on epilepsy and behavioral disturbances. These teachers also understood the need for AEDs, and fewer teachers had prejudices. The role of schoolteachers is import- ant, so it might be necessary to strengthen education on epilepsy and behavioral disturbances in the train- ing curriculum for schoolteachers and to add such topics to postgraduate training.

To ensure comprehensive medical care that satis- fies the needs of both children with epilepsy and their families, we recommend additional training of medical specialists for epilepsy, establishment of more hospitals specializing in epilepsy, and en- hancement of networks between medical institutions and relevant organizations. Various measures spe- cific to intractable epilepsy are stressed, including careful consideration of associated handicaps and side effects from AEDs, consideration of progres- sion from childhood to adult epilepsy, and proce-

dures for dealing with cases requiring psychologic or psychiatric care. We encourage further improve- ment in pediatric epileptic surgery. We urge that health personnel who participate in medical care of the child with epilepsy to continue to make steady efforts to resolve the issues impeding improvment of the quality of life.

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5.

6.

7.

REFERENCES

Miyake S. School children with epilepsy: epidemiological and longitudinal studies on questionnaire for teachers at intervals of 12 years. J Jpn Epilepsy Soc 1992;10:68-77. Sejima H, Ito M , Shiraishi H, et al. Quality of life in students with epilepsy: a survey by questionnaire for nurse-teachers in Shimane prefecture. J Jpn Pediafv Soc 1993:97:1931-8. Yamada T. Public attitudes toward epilepsy in Japan. Ann R e p Jpn Epilepsy Res Found 1994;6:204-12. Iivanainen M, Uutela A, Vikkumaa I. Public awareness and attitude toward epilepsy in Finland. Epilepsia 1980;21:413-23. Canger R, Cornaggia C. Public attitudes toward epilepsy in Italy: results of a survey and comparison with U.S.A. and West German data. Epilepsia 1985:26:221-6. Jensen R, Dam M. Public attitudes toward epilepsy in Den- mark. Epilepsia I992;33:459-63. Austin JK, Shelton Smith M, Risinger MW, et al. Childhood epilepsy and asthma: comparison of quality of life. Epilep- sia 1994:35:608- 15.

Epilepsia, Vol. 37. Suppl. 3 , 1996