Establishing clinical cutoffs for the PedsQL™ Epilepsy Module

Epilepsy Behav. 2019 Oct:99:106463. doi: 10.1016/j.yebeh.2019.106463. Epub 2019 Aug 30.

Abstract

Objective: The purpose of the present study was to establish clinical cutoffs for the PedsQL Epilepsy Module scales by dichotomizing scores into normative or impaired. We predicted that these cutoffs would be useful in identifying children at greater risk for impairments in health-related quality of life (HRQOL) including those who exhibit effects of ongoing seizures, antiepileptic drugs (AEDs), and polytherapy.

Methods: Two hundred and thirty-seven youth (2-18 years old) and their caregivers were recruited from five tertiary care hospitals across the United States. Caregivers and youth (5 years and older) completed the parent- or self-report versions of the PedsQL Epilepsy Module. Caregivers also completed measures of behavior and mood, AED side effects, and executive functioning in children. Clinical cutoffs were calculated in two ways: anchor-based (receiver operating characteristic (ROC) curve) and distribution-based (0.5 standard deviation (SD)). Medical characteristics were abstracted from the medical chart. t-Tests and chi-square tests were used to determine whether children's HRQOL classified as normative or impaired in epilepsy quality of life differed on seizure freedom, AED side effects, and polytherapy.

Results: The final clinical cutoffs were as follows for each PedsQL Epilepsy Module subscale (caregiver and child): Impact (Parent = 60.7; Child = 64.39), Cognitive (Parent = 38.11; Child = 50.97), Executive Functioning (Parent = 46.65; Child = 57.15), Sleep (Parent = 42.07; Child = 43.90), and Mood/Behavior (Parent = 54.14; Child = 53.30). Youth with more severe AED side effects, ongoing seizures, and/or on polytherapy were more likely to have impaired quality of life across domains.

Conclusion: Clinical cutoffs extend this instrument's utility in surveilling common psychosocial comorbidities, tracking changes in functioning over time, and informing clinical decision-making in youth with epilepsy including recommendations for additional assessment and intervention by a range of health providers serving youth with epilepsy (YWE).

Keywords: Adolescents; Children; Health-related quality of life; Measurement; Patient-reported outcome; Seizure.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Anticonvulsants / adverse effects
  • Anticonvulsants / therapeutic use
  • Caregivers / psychology*
  • Child
  • Child, Preschool
  • Epilepsy / diagnosis*
  • Epilepsy / epidemiology
  • Epilepsy / psychology*
  • Female
  • Humans
  • Male
  • Parents / psychology*
  • Quality of Life / psychology*
  • Self Report
  • Surveys and Questionnaires
  • Tertiary Care Centers / trends

Substances

  • Anticonvulsants