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Clinical application of the PedsQL Epilepsy Module (PedsQL-EM) in an ambulatory pediatric epilepsy setting
Danielle Hulse1, A Simon Harvey2, Jeremy L Freeman3
1Department of Paediatrics, The University of Melbourne, Parkville, Victoria 3172, Australia.
Insights
Children with epilepsy experience lower quality of life (QOL). Factors like seizure frequency and medication number significantly impact QOL, as measured by the Pediatric Quality of Life Inventory Epilepsy Module (PedsQL-EM).
Area of Science:
- Pediatric Neurology
- Quality of Life Research
- Epilepsy Management
Background:
- Children with epilepsy report diminished health-related quality of life (QOL) compared to healthy peers and those with other chronic conditions.
- Existing QOL measures may not fully capture the nuances of epilepsy's impact on pediatric patients.
- The Pediatric Quality of Life Inventory Epilepsy Module (PedsQL-EM) is a newly developed, epilepsy-specific QOL assessment tool.
Purpose of the Study:
- To pilot the PedsQL-EM in an ambulatory pediatric neurology setting.
- To identify epilepsy-related factors that significantly contribute to QOL in children with epilepsy.
- To assess the feasibility and utility of the PedsQL-EM for evaluating QOL in pediatric epilepsy patients.
Main Methods:
- Recruitment of 151 children (aged 8-18 years) with epilepsy from pediatric neurology clinics.
- Administration of age-appropriate PedsQL-EM versions to children and their caregivers.
- Collection of epilepsy-specific clinical data from treating neurologists, including seizure history, epilepsy duration, and antiepileptic drug (AED) usage.
Main Results:
- Parents reported significantly lower QOL scores across all domains compared to child self-reports.
- Factors negatively associated with QOL included earlier age at epilepsy onset, longer epilepsy duration, recent seizures, increased epilepsy severity, polypharmacy (multiple AEDs), and cognitive comorbidity.
- These epilepsy-related factors demonstrated a similar, though more variable, impact on child self-reported QOL.
Conclusions:
- The PedsQL-EM is a rapid, user-friendly, and epilepsy-specific instrument for assessing QOL in pediatric epilepsy.
- The PedsQL-EM effectively captures the impact of key clinical factors on the QOL of children with epilepsy.
- This module provides valuable insights for clinicians managing pediatric epilepsy and aiming to improve patient QOL.
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.
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