Validation of the Pediatric Cardiac Quality of Life Inventory

Cincinnati Children's Hospital Medical Center, Department of Pediatrics, 3333 Burnet Ave, MLC 5050, Cincinnati, OH 45229, USA.
PEDIATRICS (Impact Factor: 5.47). 09/2010; 126(3):498-508. DOI: 10.1542/peds.2009-2973
Source: PubMed


The purpose of this multicenter study was to confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI).
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.
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).
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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    • "Therefore, it is necessary for health care providers to better inform CHD patients of the accurate diagnosis of their own disorder and overall treatment process during adolescence. One recent multicenter study in the United States, conducted to confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory, supported the above-mentioned concept of monitoring CHD patients from childhood37). "
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    ABSTRACT: The incidence of people living with congenital heart disease (CHD) has been increasing every year owing to remarkable advances in surgical and catheter intervention techniques and devices, and improved knowledge of critical care for patients with CHD. However, these patients continue to face physical, psychosocial, and environmental challenges, and a number of studies have shown higher rates of depression and anxiety disorders than the general population. To improve psychosocial functioning and quality of life for adults with CHD, health care providers are recommended to inform CHD patients of an accurate diagnosis, and overall treatment process, beginning in adolescence to facilitate a smooth transition from adolescence to adulthood. Active cooperation with psychiatrists, psychologists, social workers, chaplains, and family members is highly recommended to help CHD patients feel normal and optimistic and to promote good social interactions, close family relationships, and a strong sense of coherence.
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    • "This is a secondary analysis of the multi-center PCQLI Validation Study [8,16]. The PCQLI Validation Study sample was recruited from seven large pediatric cardiac centers in the United States and consisted of 1,605 patients with congenital or acquired heart disease and their parents/guardians. "
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    • "It is recommended that the interval between measurements must be long enough to reduce the effects of memory and short enough to diminish the likelihood of systemic alterations. Previous studies found that a period of 1 to 4 weeks is considered adequate [44,45]. In this study, we used a 1-3 weeks interval. "
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