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

Article · November 2012with31 Reads
DOI: 10.1111/apa.12074 · Source: PubMed
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.
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    • This questionnaire is unfortunately not available in a Polish language version. The other one is the Pediatric Cardiac Quality of Life Inventory [11][12][13], adapted to cardiologic patients, also not available in Polish. Investigators try to create their own questionnaires adapted to children with cardiac arrhythmias.
    [Show abstract] [Hide abstract] ABSTRACT: Introduction: There are only few available studies evaluating quality of life (QoL) in pediatric patients with cardiac arrhythmia. The aim of the paper was to evaluate medical and psychological parameters of the QoL in children with a diagnosed supraventricular tachyarrhythmia (SVT) and to compare the obtained data with the group of healthy children (hc). Material and methods: Inclusion criteria: children aged 7-18 with SVT, treated at Poznan University of Medical Sciences, Department of Pediatric Cardiology. The evaluation tools: the WHOQOL-BREF instrument and the questionnaire related to patient's own feelings and observations concerning arrhythmia (Pediatric Arrhythmia Related Score-PARS), developed by the authors and adjusted to the group of arrhythmia patients. Results: The study included: 180 SVT children and 83 hc. On the basis of “WHOQOL-BREF” SVT-group was found to have lower assessment values of QoL within physical domain (Phd) (mean±SD: 65.7±15.8 vs 81.6±12.8; p<.0001) and psychological domain (Psd) (mean±SD: 75.8±15.2 vs 81.3±14.1; p<.005). No significant differences were found within social relationships domain as well as environment domain. On the basis of “PARS” in SVT-group the patients reported significantly increased symptoms within Phd (mean±SD: 2.3±0.7 vs 1.6±0.3; p<.0001) as well as increased negative feelings within Psd (mean±SD: 2.3±0.7 vs 2.1±0.6; p<.005). Conclusions: Medical and psychological parameters of the QoL in SVT children are significantly lower in comparison with hc. A diagnosis of SVT has no influence on the social and environmental areas of QoL. The “PARS” appears to be a useful tool to supplement the generic questionnaire for QoL evaluation in SVT children.
    Full-text · Article · Jul 2016
  • [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.
    Article · Feb 2013
  • Full-text · Article · Aug 2013
  • [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.
    Article · Sep 2013
  • [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.
    Article · Jan 2015
  • [Show abstract] [Hide abstract] ABSTRACT: Purpose This review aims to outline a systematic approach for the assessment of quality of life in children and adolescents with CHD and to cite its main determinants. A systematic critical literature search in PubMed, Scopus, and Cinahl databases resulted in 954 papers published after 2000. After the quality assessment, 32 original articles met the inclusion criteria. Methodological quality of the included studies varied greatly, showing a moderate quality. Impaired quality of life was associated with more severe cardiac lesions. Children with CHD, after cardiac surgery, reported diminished quality of life concerning physical, psycho-social, emotional, and school functioning. The majority of clinical studies showed significant differences among children and their parents' responses regarding their quality of life, with a tendency of children to report greater quality of life scores than their parents. According to our analysis, concerning children with CHD, the most cited determinants of their quality of life were as follows: (a) parental support; (b) lower socio-economic status; (c) limitations due to physical impairment; (d) sense of coherence; as well as (e) the level of child's everyday anxiety and depression. These findings suggest that differences in quality of life issues may exist across lesion severities. Quality of life in children with CHD should be assessed according to age; severity; therapeutic approach; acceptance of the disease; and personality features. Effective management and early recognition of significant impairments in quality of life could impact clinical outcomes in children with CHD.
    Article · Feb 2015
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