Abstract 5709: The Pediatric Cardiac Quality of Life Inventory: A New Reliable and Valid Disease-specific Quality of Life Measure for Children and Adolescents with Congenital and Acquired Heart Disease

Abstract

The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a self-administered disease-specific quality of life (QOL) tool with patient and parent-proxy reporting (Child form 8 –12 yrs; Adolescent form 13–18 yrs), designed to assess the QOL of pediatric patients with congenital and acquired heart disease (CHD, AHD). Our purpose was to evaluate the reliability and validity of the PCQLI Seven centers recruited CHD and AHD patients age 8 –18 yrs. Patient-parent pairs completed the PCQLI, a generic QOL tool (PedsQL), and non-QOL questionnaires [Self Perception Profile for Children/Adolescents (SPPC/A); Youth Self Report and Child Behavioral Checklist (Achenbach)]. Test-retest reliability was evaluated by administering the PCQLI at 2 time points, and was assessed by Spearman correlation coefficient. Validity was tested by assessing: differences in PCQLI score among heart disease subgroups; associations between PCQLI score and the number of cardiac surgeries, catheterizations, hospitalizations, and doctor visits; the correlation between patient and parent PCQLI scores; and correlations between PCQLI score and the scores generated by generic QOL and non-QOL tools. The study was completed by 1486 patient-parent pairs. Heart disease subgroups included: biventricular repair (45.4%); Fontan palliation (12.6%); unrepaired CHD (12.0%); heart transplant (4.4%); and AHD (25.6%). Correlations evaluating test-retest reliability were high (r=0.78 – 0.90). Lower PCQLI score was associated with Fontan palliation (p<0.001), as well as a greater number of cardiac surgeries, catheterizations, hospitalizations, and doctor visits (all p<0.001). Disattenuated correlations between patient and parent PCQLI scores were moderate (r = 0.51– 0.69). The PCQLI score and generic QOL score were highly associated (r = 0.62– 0.77). Lower PCQLI score was strongly associated with lower Global Self-Worth score on the SPPC/A (p<0.001), and lower Total Competency score (p<0.001), higher Syndrome Scale scores, and higher DSM Oriented Scale scores on the Achenbach (p<0.001). The PCQLI is a new disease-specific pediatric cardiac QOL tool that produces reliable and valid scores in children and adolescents age 8 –18 yrs. This research has received full or partial funding support from the American Heart Association, AHA Great Rivers Affiliate (Delaware, Kentucky, Ohio, Pennsylvania & West Virginia).