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Validation of the pediatric cardiac quality of life inventory
Bradley S Marino1, Ryan S Tomlinson, Gil Wernovsky
1Cincinnati Children's Hospital Medical Center, Department of Pediatrics, 3333 Burnet Ave, MLC 5050, Cincinnati, OH 45229, USA. bradley.marino@cchmc.org
Insights
The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a valid and reliable tool for assessing health-related quality of life in pediatric patients with heart disease. This finding supports its use in clinical research and patient management.
Area of Science:
- Pediatric Cardiology
- Health Outcomes Research
- Quality of Life Measurement
Background:
- Assessing health-related quality of life (HRQoL) in pediatric patients with heart disease (HD) is crucial for comprehensive care.
- Existing tools may not fully capture the unique experiences of children and adolescents with cardiac conditions.
Purpose of the Study:
- To confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI) in a multicenter setting.
- To establish the PCQLI as a dependable measure for pediatric populations with diverse heart conditions.
Main Methods:
- A multicenter study involving 1605 pediatric patients (8-18 years) with HD and their parents.
- Patients and parents completed the PCQLI alongside other validated instruments (PedsQL, SPPC/SPPA, YSR/CBCL).
- Construct validity was assessed via correlations with disease severity, healthcare utilization, and other HRQoL/behavioral measures; test-retest reliability was also evaluated.
Main Results:
- The PCQLI demonstrated strong construct validity, with lower scores correlating with disease severity (e.g., Fontan palliation, increased operations/admissions) (P<.001).
- Moderate to excellent correlations were found between patient and parent PCQLI scores (r=0.41-0.61) and with other validated measures (r=0.28-0.76).
- Excellent test-retest reliability was confirmed (r=0.78-0.90; P<.001).
Conclusions:
- The PCQLI is a valid and reliable instrument for assessing quality of life in children and adolescents with congenital and acquired heart disease.
- The PCQLI is suitable for use in future research and clinical practice to monitor patient well-being.
- Findings support the PCQLI's utility in understanding the impact of heart disease on pediatric patients' lives.
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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