The quality of life of children with epilepsy in Poland – the opinion of children and their parents

Abstract

Summary Background Every chronic illness, including epilepsy, has a negative effect on both the quality of life of the sufferer as well as on their relationship with their surroundings. Aims To investigate the quality of life of children suffering from epilepsy and analyse how they assessed and scored their experiences compared to their parents. Materials and methods The study included 209 children with epilepsy and their parents. The research tool was a questionnaire for gathering demographic and clinical data as well as the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales (PedsQL™ 4.0) questionnaire in two versions, one for 8–12 year olds and one for 13–18 year olds and their parents. Results Cronbach’s alpha coefficient for the entire PedsQL™ 4.0 questionnaire was 0.91 and 0.93 for children with epilepsy and their parents respectively. Children rated their Total Scale Score higher (67.5 points) than their parents (62.5 points). Whilst analyzing children’s functioning in different areas it was observed that girls’ assessments were higher than boys’, except for Emotional Functioning. Both parents and children scored School Functioning the lowest. The greatest agreement of responses was observed in the domain of Physical Functioning, the smallest in the domain of Emotional Functioning. Conclusions Quality of life was rated higher by both age groups of children suffering from epilepsy than by their parents. A statistically significant difference was found when comparing the assessment scores of children and parents in light of the following variables; child age, gender, illness duration, seizure frequency and treatment effectiveness.