title: Validation of the pediatric cardiac quality of life inventory.
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.
authors.affiliation: Cincinnati Children's Hospital Medical Center, Department of Pediatrics, 3333 Burnet Ave, MLC 5050, Cincinnati, OH 45229, USA. bradley.marino@cchmc.org
authors.forename: Bradley S
authors.initials: BS
authors.lastname: Marino
authors.forename: Ryan S
authors.initials: RS
authors.lastname: Tomlinson
authors.forename: Gil
authors.initials: G
authors.lastname: Wernovsky
authors.forename: Dennis
authors.initials: D
authors.lastname: Drotar
authors.forename: Jane W
authors.initials: JW
authors.lastname: Newburger
authors.forename: Lynn
authors.initials: L
authors.lastname: Mahony
authors.forename: Kathleen
authors.initials: K
authors.lastname: Mussatto
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Tong
authors.forename: Mitchell
authors.initials: M
authors.lastname: Cohen
authors.forename: Charlotte
authors.initials: C
authors.lastname: Andersen
authors.forename: David
authors.initials: D
authors.lastname: Shera
authors.forename: Philip R
authors.initials: PR
authors.lastname: Khoury
authors.forename: Jo
authors.initials: J
authors.lastname: Wray
authors.forename: J William
authors.initials: JW
authors.lastname: Gaynor
authors.forename: Mark A
authors.initials: MA
authors.lastname: Helfaer
authors.forename: Anne E
authors.initials: AE
authors.lastname: Kazak
authors.forename: Judy A
authors.initials: JA
authors.lastname: Shea
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006331:Heart Diseases / Q000628:therapy; D006801:Humans; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
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