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.
| Original language | English |
|---|---|
| Pages (from-to) | 93-101 |
| Number of pages | 9 |
| Journal | Seizure |
| Volume | 24 |
| Issue number | C |
| DOIs | |
| Publication status | Published - 2015 |
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Keywords
- Adolescents
- Children
- Epilepsy
- Family
- Parents
- Quality of life
ASJC Scopus subject areas
- Clinical Neurology
- Neurology
- Medicine(all)
Cite this
The perceived burden of epilepsy : Impact on the quality of life of children and adolescents and their families. / Cianchetti, Carlo; Messina, Paolo; Pupillo, Elisabetta; Crichiutti, Giovanni; Baglietto, Maria Giuseppina; Veggiotti, Pierangelo; Zamponi, Nelia; Casellato, Susanna; Margari, Lucia; Erba, Giuseppe; Beghi, Ettore.
In: Seizure, Vol. 24, No. C, 2015, p. 93-101.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - The perceived burden of epilepsy
T2 - Impact on the quality of life of children and adolescents and their families
AU - Cianchetti, Carlo
AU - Messina, Paolo
AU - Pupillo, Elisabetta
AU - Crichiutti, Giovanni
AU - Baglietto, Maria Giuseppina
AU - Veggiotti, Pierangelo
AU - Zamponi, Nelia
AU - Casellato, Susanna
AU - Margari, Lucia
AU - Erba, Giuseppe
AU - Beghi, Ettore
PY - 2015
Y1 - 2015
N2 - 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.
AB - 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.
KW - Adolescents
KW - Children
KW - Epilepsy
KW - Family
KW - Parents
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=84927739004&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84927739004&partnerID=8YFLogxK
U2 - 10.1016/j.seizure.2014.09.003
DO - 10.1016/j.seizure.2014.09.003
M3 - Article
C2 - 25264356
AN - SCOPUS:84927739004
VL - 24
SP - 93
EP - 101
JO - Seizure : the journal of the British Epilepsy Association
JF - Seizure : the journal of the British Epilepsy Association
SN - 1059-1311
IS - C
ER -