Article

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 Debre (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. CONCLUSION: 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.
CI - Copyright (c) 2012 Elsevier Masson SAS. All rights reserved.

Langue : FRANCAIS