Testing the Pediatric Cardiac Quality of Life Inventory in the United Kingdom
Aim: To establish the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI) for children with heart disease in the United Kingdom. Methods: Three paediatric cardiac centres recruited patients aged 8-18 years with heart disease. Patient-parent pairs completed a disease-specific paediatric cardiac quality of life measure (PCQLI), a generic quality of life measure (PedsQL4.0) and behaviour and self-perception questionnaires. Validity was assessed by correlation of PCQLI scores with heart disease severity, medical care utilization, and PedsQL, behaviour and self-perception scores, and by correlation of patient and parent PCQLI scores. Reliability was evaluated by administering the PCQLI at two time points. Results: The study was completed by 771 patient-parent pairs. Validity was confirmed by the association of lower total PCQLI scores with more complex heart disease and a greater number of hospitalizations and cardiac surgeries (all p < 0.001); moderate to good correlations between patient and parent scores (0.50-0.68); and fair to good correlations between scores for the PCQLI and PedsQL4.0 (0.67-0.77), self-perception (0.42-0.49) and behaviour measures (0.18-0.62). Test-retest reliability correlations were high (0.72-0.90). Conclusion: The PCQLI is a reliable and valid disease-specific quality-of-life measure for children with heart disease in the United Kingdom.