Validation of the pediatric cardiac quality of life inventory

Bradley S. Marino, 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

Research output: Contribution to journalArticlepeer-review

79 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)498-508
Number of pages11
JournalPediatrics
Volume126
Issue number3
DOIs
StatePublished - Sep 2010

Keywords

  • Acquired heart disease
  • Congenital heart disease
  • Health-related quality of life
  • Reliability
  • Validity

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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