Clinical application of the PedsQL Epilepsy Module (PedsQL-EM) in an ambulatory pediatric epilepsy setting

Danielle Hulse; A Simon Harvey; Jeremy L Freeman; Mark T Mackay; Gabriel Dabscheck; Sarah M Barton

doi:10.1016/j.yebeh.2020.107005

Clinical application of the PedsQL Epilepsy Module (PedsQL-EM) in an ambulatory pediatric epilepsy setting

Epilepsy Behav. 2020 May:106:107005. doi: 10.1016/j.yebeh.2020.107005. Epub 2020 Mar 19.

Authors

Danielle Hulse¹, A Simon Harvey², Jeremy L Freeman³, Mark T Mackay², Gabriel Dabscheck⁴, Sarah M Barton⁵

Affiliations

¹ Department of Paediatrics, The University of Melbourne, Parkville, Victoria 3172, Australia.
² Department of Paediatrics, The University of Melbourne, Parkville, Victoria 3172, Australia; Department of Neurology, The Royal Children's Hospital, 50 Flemington Rd, Parkville, Victoria 3172, Australia; Clinical Sciences, Murdoch Children's Research Institute, 50 Flemington Rd, Parkville, Victoria 3172, Australia.
³ Department of Neurology, The Royal Children's Hospital, 50 Flemington Rd, Parkville, Victoria 3172, Australia.
⁴ Department of Neurology, The Royal Children's Hospital, 50 Flemington Rd, Parkville, Victoria 3172, Australia; Clinical Sciences, Murdoch Children's Research Institute, 50 Flemington Rd, Parkville, Victoria 3172, Australia.
⁵ Department of Paediatrics, The University of Melbourne, Parkville, Victoria 3172, Australia; Department of Neurology, The Royal Children's Hospital, 50 Flemington Rd, Parkville, Victoria 3172, Australia; Clinical Sciences, Murdoch Children's Research Institute, 50 Flemington Rd, Parkville, Victoria 3172, Australia. Electronic address: Sarah.Barton@rch.org.au.

PMID: 32199347
DOI: 10.1016/j.yebeh.2020.107005

Abstract

Introduction: Children with epilepsy report lower health-related quality of life (QOL) compared with healthy children and those with other chronic disorders. This study piloted the recently published Pediatric Quality of Life Inventory (PedsQL) Epilepsy Module (PedsQL-EM) in an ambulatory setting and studied epilepsy-related factors contributing to QOL in children with epilepsy.

Methods: Children with epilepsy aged 8-18 years who were ambulant and verbal were recruited from pediatric neurology clinics. Children and their caregivers completed age-appropriate versions of the PedsQL-EM (8-12 or 13-18 years) in the clinic waiting area. Treating neurologists completed medical questionnaires about their patients' epilepsy.

Results: We collected 151 parent-report and 127 self-report PedsQL-EMs. Administration time was 5-10 min with some children receiving assistance from the researcher. Mean age of children was 12.9+/-3.0, with 77 females (51%). Parents reported lower mean QOL scores across all subdomains compared with their children. Parents reported significantly lower QOL for children with earlier age at epilepsy onset, longer epilepsy duration, presence of seizures during the last month, more severe epilepsy, increased number of antiepileptic drugs (AEDs), and cognitive comorbidity. The same factors impacted on child self-reporting, but with more variability across subdomains.

Conclusions: The PedsQL-EM is an epilepsy-specific measure of QOL that is quick and easy to administer and is sensitive to the clinical factors reported to impact on QOL in pediatric epilepsy.

Keywords: Pediatric epilepsy; Quality of life.

MeSH terms

Adolescent
Ambulatory Care / methods
Ambulatory Care / standards*
Caregivers / psychology
Child
Epilepsy / diagnosis
Epilepsy / psychology*
Epilepsy / therapy
Female
Humans
Male
Neurologists / standards
Parents / psychology*
Pediatricians / standards
Quality of Life / psychology*
Self Report / standards*
Surveys and Questionnaires / standards*