Developing and testing a cognitive bolt-on for the EQ-5D-Y (Youth).

Area of Science:

• Pediatric Health Outcomes
• Psychometrics
• Health-Related Quality of Life (HRQoL) Measurement

Background:

• The EQ-5D-Y (Youth) is a widely used instrument for measuring Health-Related Quality of Life (HRQoL).
• Cognitive functioning is a critical aspect of HRQoL in children and adolescents, yet it is not fully captured by existing measures.
• There is a need to enhance pediatric HRQoL instruments to include comprehensive cognitive assessments.

Purpose of the Study:

• To develop and evaluate a cognitive dimension as a supplementary module for the German version of the EQ-5D-Y.
• To assess the acceptability, feasibility, and performance of this cognitive bolt-on in a pediatric population.
• To determine if incorporating cognitive functioning improves the overall HRQoL measurement in youth.

Main Methods:

• A literature review and six focus groups with children and adolescents informed the development of the cognitive dimension.
• A two-phase pretest, including qualitative interviews and a clinical setting pretest, assessed the new dimension's properties.
• A total of 280 children and adolescents participated in the study, with data analyzed for acceptability, feasibility, and performance.

Main Results:

• The cognitive dimension incorporates key aspects of cognitive functioning: school performance, concentration, memory, and learning ability.
• The EQ-5D-Y with the cognitive bolt-on demonstrated good acceptability, feasibility, and performance in children with rheumatic disorders or type 1 diabetes.
• The addition of cognitive items significantly improved the explanatory power of the EQ visual analogue scale (EQ-VAS), and factor analysis suggests potential for a shorter version.

Conclusions:

• The enhanced EQ-5D-Y with a cognitive bolt-on is a suitable instrument for assessing HRQoL in children and adolescents, aligning with current research.
• Cognitive functioning is empirically shown to be an integral component of HRQoL assessment in pediatric populations.
• Including a cognitive dimension substantially improves the precision and comprehensiveness of HRQoL measurement in youth.