A PROSPECTIVE STUDY ON THE IMPACT OF A CHILD'S EPILEPSY ON THEIR QUALITY OF LIFE AND THEIR FAMILY
Author(s)
Deiratany S1, Najam Y1, Grant D2, Sawyer W2, Hughes J3, McMenamin J4, Webb D4, Reeves P21Royal College of Surgeons in Ireland, Dublin, Dublin County, Ireland; 2 Fourth Hurdle Consulting Ltd, London, United Kingdom; 3 GlaxoSmithKline Ireland, Dublin, Ireland; 4 Our Lady's Hospital for Sick Children, Crumlin, Dublin, Ireland
OBJECTIVES: The aim of this prospective study was to determine the relationship between seizure type, seizure frequency and epilepsy syndrome on the quality of life of both the child and family over a one year period. METHOD: The sample was drawn from a population of children with epilepsy attending a tertiary Paediatric Neurology service in Dublin. Data was collected on seizure type and frequency, epilepsy syndrome, physical and cognitive ability, behaviour, co-morbidities, demographic and socio-economic variables. The attending parent completed the Child Health Questionnaire 50-item version (CHQ-50) for children ≥5 years at baseline and 12 months. The Impact of Paediatric Epilepsy Scale (IPES) was used to measure burden on families. RESULTS: 132 children were enrolled and data was available on 127. The median age was 8.8 years and 54% were male. 63% had partial seizures and 61% of all children had cryptogenic or symptomatic epilepsy. 53% of children had frequent seizures (>10/month). 93 children ≥5 years were included in the QOL analysis. Children with frequent seizures scored significantly worse than those with no/infrequent seizures on 10/14 and 11/14 of the CHQ-50 subscales tested and both IPES scores at baseline and 12 months respectively. Children with cryptogenic/symptomatic epilepsy scored significantly worse than those with idiopathic epilepsy. No such differences were found between seizure types and there were no differences between findings at baseline and 12 months. CONCLUSIONS: The burden of epilepsy on children and their families is substantial. Seizure frequency and epilepsy syndrome rather than seizure type determines the impact.
Conference/Value in Health Info
2005-11, ISPOR Europe 2005, Florence, Italy
Value in Health, Vol. 8, No.6 (November/December 2005)
Code
PNL5
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Neurological Disorders