Testing the Pediatric Cardiac Quality of Life Inventory in the United Kingdom

Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
Acta Paediatrica (Impact Factor: 1.67). 11/2012; 102(2). DOI: 10.1111/apa.12074
Source: PubMed


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.

16 Reads
  • [Show abstract] [Hide abstract]
    ABSTRACT: Purpose: To demonstrate the generalisability of the Pediatric Cardiac Quality of Life Inventory in the United Kingdom. Methods: Children and adolescents with heart disease were recruited from three tertiary paediatric cardiac centres in the United Kingdom and completed the Pediatric Cardiac Quality of Life Inventory. Item response option variability, total and subscale scores, patterns of correlation, and internal consistency were compared between the three sites. Results: A total of 1537 participants--768 children/adolescents and 769 parents--were evaluated from the three sites. Patterns of item response option variability were similar and acceptable for all samples--child, adolescent, parent of child, and parent of adolescent. Internal consistency was high (0.82-0.96) for all samples from each site, and item-subscale, subscale-subscale, subscale-total, and item-total correlations were moderate to excellent for each centre. Comparisons of patterns of subscale and total score correlations between the three sites revealed no significant differences. Conclusion: Scores on the Pediatric Cardiac Quality of Life Inventory are generalisable in the United Kingdom, supporting the use of this measure for multi-centre studies of health-related quality of life of children and adolescents with heart disease.
    Cardiology in the Young 02/2013; 24(2):1-9. DOI:10.1017/S1047951113000061 · 0.84 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: The overall aim was to assess the reliability and accomplish a limited validation of the Pediatric Quality of Life Inventory 3.0 Cardiac Module Scales (PedsQL 3.0), Swedish version, in a sample of Swedish children diagnosed with congenital heart defects (CHD). A secondary aim was to assess whether the children's health-related quality of life (HRQOL) was affected by gender, age, severity of the CHD, surgical intervention and whether the child self-report and parent proxy-report were consistent. A total of 126 families at The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, participated in the study. The PedsQL Inventory 4.0 Generic Core Scales (PedsQL 4.0) and the PedsQL 3.0 were administered to 94 children (aged 5–18 years) with CHD and 126 parents (of children with CHD aged 2–18 years). The results showed that the internal consistency of the PedsQL 3.0 reached or exceeded Cronbach's alpha values of 0.70 for both child self-report and parent proxy-report. The PedsQL 4.0 and PedsQL 3.0 were highly correlated (r = 0.78 for parents and r = 0.79 for children), indicating convergent validity. Age group 5–7 years had the lowest estimated HRQOL in comparison with the age group 8–12 years and 13–18 years. The group of children with severe cardiac disease generally reported significantly lower HRQOL as compared with the mild and moderate groups (p < 0.05). Children who had undergone cardiac surgery reported lower cardiac-specific HRQOL than children who were not surgically treated (p < 0.05). In conclusion, the PedsQL 3.0, Cardiac Module, reached acceptable α-values and can be a useful tool in clinical practice and in research.
    Nordic psychology 09/2013; DOI:10.1080/19012276.2013.824204 · 0.18 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Treatment for electrophysiologic diseases (EPD) in pediatric patients has improved. Effects on quality of life (QOL) are unknown. 1) To compare QOL within EPD groups and to other congenital heart diseases (CHD); 2) To evaluate effects of cardiac rhythm devices (CRD) on QOL; 3) To identify drivers of QOL in EPD. Cross-sectional study of patient/parent proxy-reported Pediatric Cardiac Quality of Life Inventory (PCQLI) scores (Total, Disease Impact (DI), Psychosocial Impact (PI)) in subjects 8-18 years from 11 centers with congenital heart block (CCHB), ventricular tachycardia (VT), supraventricular tachycardia (SVT), and long QT syndrome (LQTS). QOL was compared between EPD groups and CHD groups [bicuspid aortic valve (BAV), tetralogy of Fallot (TOF) and Fontan]. General linear modeling (GLM) was used to perform group comparisons and identify predictors of QOL variation. Among 288 patient-parent pairs, mean age was 12.8+3.0 years. CCHB (μ =83) showed higher patient Total QOL than other EPD cohorts (p<0.02; LQTS μ=73; SVT μ =74). SVT (μ =75) and LQTS (μ =75) had lower patient Total scores than BAV (μ =81; p<0.008). Patient/parent-proxy QOL scores for all EPD groups were not different than TOF and higher than Fontan. The presence of CRDs was associated with lower QOL scores in LQTS (μ =66 vs. μ =76; p<0.01). Predictors of lower patient/parent-proxy QOL included EPD type (p<0.03), increased medical care utilization (p<0.04), and no parental college degree (p<0.001). Given significant variation in QOL in EPD type, stratification by EPD type and increased medical care utilization may allow for targeted interventions to improve QOL. Copyright © 2015. Published by Elsevier Inc.
    Heart rhythm: the official journal of the Heart Rhythm Society 01/2015; 12(5). DOI:10.1016/j.hrthm.2015.01.022 · 5.08 Impact Factor
Show more