For heart disease children, recent suggestion said that lower score on the Pediatric Cardiac Quality of Life Inventory (PCQLI) linked to worsen in fontan palliation and greater number of cardiac operations.
Fontan palliation is one of surgical approaches to single-ventricle physiologic abnormalities.
Reported as September issue of Pediatric, the study authors, Bradley S. Marino, MD, MPP, MSCE, from Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio, and colleagues, write that the purpose of their study was to confirm the validity and reliability of the PCQLI by measuring correlations of PCQLI scores between patients and parents, as well as with severity of congenital heart disease; medical care utilization; and pediatric quality of life inventory (PedsQL), self-perception profile for children (SPPC) or self-perception profile for adolescents (SPPA), and youth self-report (YSR) or child behavior checklist (CBCL) scores, including assessed PCQLI test-retest reliability.
According to the investigators, they doing this because little is known regarding the impact of important clinical and patient factors (such as disease severity, medical care utilization, patient-parent consensus, and patient self-perception, competency, and behavior) on HRQoL in the pediatric cardiac population.
1605 pediatric patients (8 to 18 years old) at 7 centers with heart disease and their parents completed the PCQLI and generic health-related quality-of-life instrument (PedsQL) and non-quality-of-life instruments (SPPC/SPPA, and YSR/CBSL).
From the study, the investigator found that lower PCQLI scores were associated with Fontan palliation and greater numbers of cardiac operations, hospital admissions, and physician visit, supporting PCQLI construct validity.
Further substantiation included moderate to good correlations between patients and parent PCQLI scores and fair to good correlation between PCQLI total scores and PedsQL total, SPPC/SPPA global self-worth, YSR/CBCL total competency, and syndrome and the Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition-oriented scale scores).
The PCQLI also had excellent test-retest reliability correlations.
Overall, the authors write, “PCQLI scores are valid and reliable for children and adolescents with congenital and acquired HD [heart disease] and may be useful for future research and clinical management.”
Despite the limitation of this study included that the study population was predominantly mothers and had above-average socioeconomic status and educational backgrounds, the author conclude, “This large, multicenter study showed that lower HRQoL was associated with greater disease severity and medical care utilization, poorer patient self-perception and competency, and increased behavioral and emotional problems in the pediatric cardiac population.”