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Multicenter Study
. 2010 Sep;126(3):498-508.
doi: 10.1542/peds.2009-2973. Epub 2010 Aug 30.

Validation of the pediatric cardiac quality of life inventory

Bradley S Marino  1 , Ryan S Tomlinson, Gil Wernovsky, Dennis Drotar, Jane W Newburger, Lynn Mahony, Kathleen Mussatto, Elizabeth Tong, Mitchell Cohen, Charlotte Andersen, David Shera, Philip R Khoury, Jo Wray, J William Gaynor, Mark A Helfaer, Anne E Kazak, Judy A Shea; Pediatric Cardiac Quality of Life Inventory Testing Study Consortium
Affiliations
Multicenter Study

Validation of the pediatric cardiac quality of life inventory

Bradley S Marino et al. Pediatrics. 2010 Sep.

Abstract

Objective: The purpose of this multicenter study was to confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI).

Methods: Seven centers recruited pediatric patients (8-18 years of age) with heart disease (HD) and their parents to complete the PCQLI and generic health-related quality of life (Pediatric Quality of Life Inventory [PedsQL]) and non-quality of life (Self-Perception Profile for Children [SPPC]/Self-Perception Profile for Adolescents [SPPA] and Youth Self-Report [YSR]/Child Behavior Checklist [CBCL]) tools. PCQLI construct validity was assessed through correlations of PCQLI scores between patients and parents and with severity of congenital HD, medical care utilization, and PedsQL, SPPC/SPPA, and YSR/CBCL scores. PCQLI test-retest reliability was evaluated.

Results: The study enrolled 1605 patient-parent pairs. Construct validity was substantiated by the association of lower PCQLI scores with Fontan palliation and increased numbers of cardiac operations, hospital admissions, and physician visits (P<.001); moderate to good correlations between patient and parent PCQLI scores (r=0.41-0.61; P<.001); and fair to good correlations between PCQLI total scores and PedsQL total (r=0.70-0.76), SPPC/SPPA global self-worth (r=0.43-0.46), YSR/CBCL total competency (r=0.28-0.37), and syndrome and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-oriented scale (r=-0.58 to -0.30; P<.001) scores. Test-retest reliability correlations were excellent (r=0.78-0.90; P<.001).

Conclusions: PCQLI scores are valid and reliable for children and adolescents with congenital and acquired HD and may be useful for future research and clinical management.

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Figures

FIGURE 1
FIGURE 1
Association of severity of congenital HD with PCQLI scores. Values are expressed as means, with error bars representing SEMs. All 3-way (P < .001) and 2-way (P ≤.036) comparisons were statistically significant. BV indicates repaired biventricular HD subgroup; SV, palliated single-ventricle subgroup; mild, mild HD subgroup.
FIGURE 2
FIGURE 2
Variation of PCQLI total scores with medical care utilization factors. Values are expressed as means, with error bars representing SEMs. All comparisons were significant (P < .001).
See this image and copyright information in PMC

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