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

Open access

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.

Aggarwal A., Datta V., Thakur L.C.: Quality of Life in children with epilepsy. Indian J. Pediatr., 2011, 17: 893–896.

Aldenkamp A.P., Van Donselaar C.A., Flamman A., Lafarre D.L.W.: Psychological reactions to the epilepsy in an unselected group of patients with epilepsy under treatment in general hospitals. Seizure, 2003, 12: 101–106.

Amiri P., Eslamian G., Mirmiran P., Shiva N., Jafarabadi M.A., Azizi F.: Validity and reliability of the Iranian version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) Generic Core Scales in children. Health Qual. Life Outcomes, 2012, 10: 3 doi:10.1186/1477-7525-10-3.

Aydemir N., Ozkara C., Unsal P., Canbeyli R.: A comparative study of health related quality of life, psychological well-being, impact of illness and stigma in epilepsy and migraine. Seizure, 2011, 20: 679–685.

Duan X., Zhang Sh., Xiao N.: Reliability and validity of the PedsQL Generic Core Scales 4.0 for Chinese children with epilepsy. Epilepsy Behav., 2012, 23: 431–443.

Engelen V., Haentjens M.M., Detmar S.B., Koopman H.M., Grootenhuis M.A.: Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands. BMC Pediatrics, 2009, 9: 68 doi: 10.1186/1471-2431-9-68.

Felder-Puig R., Frey E., Proksch K., Varni J.W., Gadner H., Topf R.: Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Qual. Life Res., 2004, 13: 223–234.

Gandhi C.S., Kundra S., Singh T., Chaudary G.K., Khosla P.P.: Assessment of Quality of Life in Children with Asthma and Epilepsy. Pediat. Therapeut., 2013, 3: 175 doi: 10.4172/2161-0665.1000175.

Haneef Z., Grant M.L., Valencia I., Hobdell E.F., Kothare S.V., Legido A. et al.: Correlation between child and parental perceptions of health-related quality of life in epilepsy using the PedsQL. v4.0 measurement model. Epileptic Disord., 2010, 12: 275–282.

Klatchoian D.A., Len C.A., Ra Terreri M.T., Silva M., Itamoto C., Ciconelli R.M. et al.: Quality of life of children and adolescents from São Paulo: reliability and validity of the Brazilian version of the Pediatric Quality of Life Inventory version 4.0 Generic Core Scales. J. Pediatr. (Rio J), 2008, 84: 308–315.

Limbers Ch.A., Ripperger-Suhler J., Heffer R.W., Varni J.W.: Patient – reported Pediatric Quality of Life Inventory 4.0 Generic Core Scales in pediatric patients with attention-deficit/hyperactivity disorder and comorbid psychiatric disorders: feasibility, reliability and validity. Value Health, 2011, 14: 521–530.

Mcewan M.J., Espie C.A., Metcalfe J.: Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure, 2004, 13: 15–31.

Modi A.C., Ingerski L.M., Rausch J.R., Glauser T.A.: Treatment factors affecting longitudinal quality of life in new onset pediatric epilepsy. J. Pediatr. Psychol., 2011, 4: 466–475.

Ovšonková A., Mahútová Z.: The quality of life for children with epilepsy. Ošetř. porod. assist., 2014, 5: 9–14.

Reinfjell T., Diseth T.H., Veenstra M., Vikan A.: Measuring health-related quality of life in young adolescents: reliability and validity in the Norwegian version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual. Life Outcomes, 2006, 4: 61 doi:10.1186/1477-7525-4-61.

Ronen G.M., Streiner D.L., Rosenbaum P.: Health-related quality of life in childhood epilepsy: Moving beyond’ seizure control with minimal adverse effects’. Health Qual. Life Outcomes, 2003, 1: 36 doi: 10.1186/1477-7525-1-36.

Sabaz M., Lawson J.A., Cairns D.R., Duchowny M.S., Resnick T.J., Dean P.M. et al.: Validation of the Quality of Life in Childhood Epilepsy Questionnaire in American epilepsy patients. Epilepsy Behav., 2003, 4: 680–691.

Talarska D., Steinborn B., Michalak M.: Cognitive functioning and behaviour of epileptic children in parents’ assessment. Neurol. Neurochir. Pol., 2011, 45: 474–479.

Varni J.W., Seid M., Kurtin P.S.: PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med. Care, 2001, 39: 800–812.

Varni J.W., Burwinkle T.M., Seid M., Skarr D.: The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability and validity. Ambul. Pediatr., 2003, 3: 329–341.

Varni J.W., Burwinkle T.M., Seid M.: The PedsQL 4.0 as a school population health measure: feasibility, reliability and validity. Qual. Life Res., 2006, 15: 203–215.

Wirastuti F., Patria S.Y., Machfudz S.: Quality of life epilepsy in childhood: Comparison between well-controlled epilepsy and non epilepsy. J. Med. Sci., 2011, 43: 99–104.

Journal Information

Metrics

All Time Past Year Past 30 Days
Abstract Views 0 0 0
Full Text Views 248 132 5
PDF Downloads 131 82 9