Development of the PedsQL™ Epilepsy Module: Focus group and cognitive interviews

Area of Science:

• Pediatric Health Outcomes Research
• Quality of Life Measurement
• Epilepsy Management

Background:

• Youth with epilepsy experience impaired health-related quality of life (HRQOL).
• Existing HRQOL measures for epilepsy are limited in scope, age range, and clinical utility.
• Generic HRQOL tools fail to capture epilepsy-specific challenges.

Purpose of the Study:

• To develop items and establish content validity for the PedsQL™ Epilepsy Module.
• To create a comprehensive HRQOL measure for pediatric epilepsy patients.
• To address limitations of existing epilepsy-specific and generic HRQOL instruments.

Main Methods:

• Utilized an iterative qualitative process involving focus groups with families, expert input, and cognitive interviews.
• Engaged 11 pediatric epilepsy health providers for feedback on the conceptual model and content.
• Conducted focus groups with 21 pediatric patients (ages 4-17) and 22 parents.
• Performed cognitive interviews with 13 pediatric patients (ages 5-17) and 17 parents.

Main Results:

• Developed 6 final domains: restrictions, seizure management, cognitive/executive functioning, social, sleep/fatigue, and mood/behavior.
• Created patient self-report versions (30-33 items) and parent proxy-report versions (26-33 items).
• Included shorter versions for toddlers and young children.

Conclusions:

• Employed standardized qualitative methodology to develop the PedsQL™ Epilepsy Module.
• The module has the potential to improve clinical decision-making in pediatric epilepsy.
• It captures and monitors key patient-identified contributors to HRQOL in children with epilepsy.