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The Perceived burden of epilepsy: impact on the quality of life of children and adolescents and their families

Cianchetti, Carlo and Messina, Paolo and Pupillo, Elisabetta and Crichiutti, Giovanni and Baglietto, Maria Giuseppina and Veggiotti, Pierangelo and Zamponi, Nelia and Casellato, Susanna and Margari, Lucia and Erba, Giuseppe and Beghi, Ettore (2015) The Perceived burden of epilepsy: impact on the quality of life of children and adolescents and their families. Seizure, Vol. 24 , p. 93-101. ISSN 1059-1311. eISSN 1532-2688. Article.

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DOI: 10.1016/j.seizure.2014.09.003

Abstract

Purpose: The assessment of the quality of life (QoL) is relevant for a comprehensive treatment of patients with epilepsy. In children and adolescents, an impact of epilepsy on the QoL of the entire family is expected.
Methods: We asked 293 parents of children and adolescents with epilepsy, included in an observational study on treatment satisfaction, to evaluate the impact of the disease on several aspects of the QoL of the whole family using a specifically organized questionnaire (IEQoL).
Results: The degree of parents’ concerns about epilepsy and the severity of the disease correlated with a deterioration of QoL in both the children and the family. This involved all aspects of QoL (conflicts within the family, job, leisure activities, peer relationship, economy) although to a different degree. Parents frequently admitted increased apprehensiveness, even when not justified by the low severity of the disease. There was general agreement between parents and their adolescent children, although in a few cases adolescents overrated their school and daily performance in respect to the parents, suggesting a tendency to overlook their problems.
Conclusion: Epilepsy impairs all aspects of QoL, although at different degree, both in children/adolescents and in their families. Parental apprehensiveness appears to have a role on this, and it may not reflect the severity of the disease.

Item Type:Article
ID Code:10617
Status:Published
Refereed:Yes
Uncontrolled Keywords:Epilepsy, quality of life, children, adolescents, parents, family
Subjects:Area 06 - Scienze mediche > MED/26 Neurologia
Divisions:002 Altri enti e centri di ricerca del Nord Sardegna > AOU -Azienda Ospedaliero Universitaria, Sassari
001 Università di Sassari > 03 Istituti > Neuropsichiatria infantile
Publisher:Elsevier
ISSN:1059-1311
eISSN:1532-2688
Deposited On:14 Jan 2015 14:43

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