PedsQL Generic Core Scales was more discriminative while EQ-5D-Y-5L was more responsive in a longitudinal study of multiethnic Asian children and adolescents with heart disease

Objectives: This study compared the measurement properties of five pediatric health-related quality of life (HRQoL) instruments—three preference-based (3-level EQ-5D-Y [EQ-5D-Y-3L], 5-level EQ-5D-Y [EQ-5D-Y-5L], and Child Health Utility 9D [CHU9D]) and two nonpreference-based (Pediatric Quality of Life Inventory [PedsQL] Generic Core Scales and PedsQL Cardiac Module)—in a multiethnic Asian cohort of children and adolescents with heart disease to guide their use in clinical and health technology assessments (HTAs). Methods: A total of 221 children aged 8–18 years from two tertiary hospitals in Singapore completed all instruments at baseline, with follow-up at 1 and 12 months. We assessed validity, internal consistency, test–retest reliability, and responsiveness. Results: Of participants, 85% had congenital heart disease, 9% arrhythmia, and 6% heart failure. Ceiling effects were high for EQ-5D-Y-3L (49.3%) and EQ-5D-Y-5L (47.5%) but lower for CHU9D (15.4%). PedsQL dimensions showed acceptable internal consistency (Cronbach's α ≥ 0.70), except for school functioning (α = 0.52) and treatment adherence (α = 0.56). Preference-based instruments demonstrated good convergent validity with the PedsQL Generic Core Scales (≥75% of hypotheses met). Known-group validity was the strongest for PedsQL Generic Core Scales, followed by EQ-5D-Y instruments and CHU9D. Test–retest reliability was satisfactory (intraclass correlation coefficient [ICC] ≥0.70), except EQ-5D-Y-3L utility (ICC = 0.68). Responsiveness was the highest for EQ-5D-Y-5L (standardized response mean = 0.50), followed by EQ-5D-Y-3L and CHU9D; PedsQL instruments were minimally responsive. Conclusion: The PedsQL Generic Core Scales is suitable for cross-sectional outcome assessment requiring discrimination between HRQoL levels. EQ-5D-Y-5L shows superior responsiveness and is recommended for intervention studies requiring preference-based outcomes. CHU9D demonstrates low ceiling effects and good reliability, but less discriminative ability than EQ-5D-Y instruments. Instrument selection should align with clinical and HTA objectives.