[Assessment of education needs of adolescents and parents of children with epilepsy].
BACKGROUND
Education program for patients (EPP) is now a part of the management of patients with chronic disease. According to WHO, the EPP is designed to help patients to maintain or gain self-care skills and adaptive skills necessary to improve their health and their quality of life. Patient education programs have been developed in recent years in several chronic diseases such as diabetes and asthma. In the field of epilepsy, however, adult and child programs have been developed only recently in France. We evaluate the interests for the establishment of an EPP and the topics that the parents and the adolescents would like to be discussed in such courses.


METHODS
We conducted a qualitative survey, based on interviews of parents of epileptic children and adolescents. The survey was conducted between April and November 2010 in pediatric neurology services of four French university hospitals: Amiens, Nancy, Marseille, and in Robert Debré (Paris) hospital. We investigated the following issues: treatment and self-management, and seizure management, psychosocial difficulties related to epilepsy, anatomical and physiological knowledge of epilepsy and lifestyle.


RESULTS
Two topics seem to have the greatest interest for parents of children with epilepsy and adolescents: knowledge about seizures and knowledge of anatomy and physiology of the brain. Adolescents involved in this study gave consistently lower scores in all items compare to parents of children.


CONCLUSIONS
The medical management of children and adolescents with epilepsy, and their caregivers, is a comprehensive care including the EPP in order to provide a full management of all issues raised by epilepsy. The survey identified key-points that parents and their children would like to learn in an EPP. These data would be helpful to design an EPP.
Service de neurologie pédiatrique et des maladies métaboliques, CHU hôpital Robert Debré, AP-HP, 48, boulevard Sérurier, 75935 Paris cedex 19, France.
B
B
Desnous
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E
Bourel-Ponchel
E
E
Raffo
M
M
Milh
S
S
Auvin
D000293:Adolescent; D000328:Adult; D000927:Anticonvulsants / Q000627:therapeutic use; D001921:Brain / Q000473:pathology / Q000503:physiopathology; D002648:Child; D002653:Child Behavior Disorders / Q000209:etiology / Q000628:therapy; D002675:Child, Preschool; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D005602:France; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D008019:Life Style; D008297:Male; D020380:Needs Assessment; D010290:Parents / Q000523:psychology*; D010346:Patient Care Management; D010353:Patient Education as Topic / Q000379:methods* / Q000592:standards; D010361:Patients; D012640:Seizures / Q000628:therapy; D012920:Social Behavior Disorders / Q000209:etiology / Q000628:therapy
D000927:Anticonvulsants