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 journalArticle

74 Citations (Scopus)

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 - 2010

Fingerprint

Quality of Life
Pediatrics
Equipment and Supplies
Self Concept
Child Behavior
Checklist
Reproducibility of Results
Self Report
Heart Diseases
Parents
Diagnostic and Statistical Manual of Mental Disorders
Multicenter Studies
Physicians

Keywords

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

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Medicine(all)

Cite this

Marino, B. S., Tomlinson, R. S., Wernovsky, G., Drotar, D., Newburger, J. W., Mahony, L., ... Shea, J. A. (2010). Validation of the pediatric cardiac quality of life inventory. Pediatrics, 126(3), 498-508. https://doi.org/10.1542/peds.2009-2973

Validation of the pediatric cardiac quality of life inventory. / Marino, Bradley S.; Tomlinson, Ryan S.; Wernovsky, Gil; Drotar, Dennis; Newburger, Jane W.; Mahony, Lynn; Mussatto, Kathleen; Tong, Elizabeth; Cohen, Mitchell; Andersen, Charlotte; Shera, David; Khoury, Philip R.; Wray, Jo; Gaynor, J. William; Helfaer, Mark A.; Kazak, Anne E.; Shea, Judy A.

In: Pediatrics, Vol. 126, No. 3, 2010, p. 498-508.

Research output: Contribution to journalArticle

Marino, BS, Tomlinson, RS, Wernovsky, G, Drotar, D, Newburger, JW, Mahony, L, Mussatto, K, Tong, E, Cohen, M, Andersen, C, Shera, D, Khoury, PR, Wray, J, Gaynor, JW, Helfaer, MA, Kazak, AE & Shea, JA 2010, 'Validation of the pediatric cardiac quality of life inventory', Pediatrics, vol. 126, no. 3, pp. 498-508. https://doi.org/10.1542/peds.2009-2973
Marino BS, Tomlinson RS, Wernovsky G, Drotar D, Newburger JW, Mahony L et al. Validation of the pediatric cardiac quality of life inventory. Pediatrics. 2010;126(3):498-508. https://doi.org/10.1542/peds.2009-2973
Marino, Bradley S. ; Tomlinson, Ryan S. ; Wernovsky, Gil ; Drotar, Dennis ; Newburger, Jane W. ; Mahony, Lynn ; Mussatto, Kathleen ; Tong, Elizabeth ; Cohen, Mitchell ; Andersen, Charlotte ; Shera, David ; Khoury, Philip R. ; Wray, Jo ; Gaynor, J. William ; Helfaer, Mark A. ; Kazak, Anne E. ; Shea, Judy A. / Validation of the pediatric cardiac quality of life inventory. In: Pediatrics. 2010 ; Vol. 126, No. 3. pp. 498-508.
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AU - Marino, Bradley S.

AU - Tomlinson, Ryan S.

AU - Wernovsky, Gil

AU - Drotar, Dennis

AU - Newburger, Jane W.

AU - Mahony, Lynn

AU - Mussatto, Kathleen

AU - Tong, Elizabeth

AU - Cohen, Mitchell

AU - Andersen, Charlotte

AU - Shera, David

AU - Khoury, Philip R.

AU - Wray, Jo

AU - Gaynor, J. William

AU - Helfaer, Mark A.

AU - Kazak, Anne E.

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N2 - 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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