Carlo Cianchetti1, Paolo Messina2, Elisabetta Pupillo2, Giovanni Crichiutti3, Maria Giuseppina Baglietto4, Pierangelo Veggiotti5, Nelia Zamponi6, Susanna Casellato7, Lucia Margari8, Giuseppe Erba9, Ettore Beghi2. 1. Clinic of Child and Adolescent Neuropsychiatry, University, Azienda Ospedaliero-Universitaria, Cagliari, Italy. Electronic address: cianchet@unica.it. 2. Department of Neurosciences, IRCSS - Istituto for Pharmacological Research "Mario Negri", Milano, Italy. 3. Department of Pediatrics, DPMSC, "Santa Maria della Misericordia" University Hospital, Udine, Italy. 4. Child Neuropsychiatry Unit, "Giannina Gaslini" Institute, Genoa University, Genova, Italy. 5. Child Neuropsychiatry Unit, Foundation Neurological Institute "C. Mondino", Pavia, Italy. 6. Child Neuropsychiatry Unit, "G. Salesi" Pediatric Hospital, Ancona, Italy. 7. Child Neuropsychiatry Unit, University Hospital, Sassari, Italy. 8. Child Neuropsychiatry Unit, University Hospital, Bari, Italy. 9. Department of Neurosciences, IRCSS - Istituto for Pharmacological Research "Mario Negri", Milano, Italy; Department of Neurology, SEC, University of Rochester, Rochester, NY, United States.
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.
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.
Authors: Offer E Edelstein; Talia Shorer; Zamir Shorer; Yaacov G Bachner Journal: Int J Environ Res Public Health Date: 2022-09-14 Impact factor: 4.614