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Acta Paediatr. 2013 Feb;102(2):e68-73. doi: 10.1111/apa.12074. Epub 2012 Nov 27.

Testing the pediatric cardiac quality of life inventory in the United kingdom.

Author information

  • 1Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK. jo.wray@btopenworld.com



To establish the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI) for children with heart disease in the United Kingdom.


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.


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).


The PCQLI is a reliable and valid disease-specific quality-of-life measure for children with heart disease in the United Kingdom.

©2012 The Author(s)/Acta Paediatrica ©2012 Foundation Acta Paediatrica.

[PubMed - indexed for MEDLINE]
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