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 818 similar to years with heart disease. Patientparent 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 patientparent 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 similar to