Testing the Pediatric Cardiac Quality of Life Inventory

Children'S Hosp Of Philadelphia, Philadelphia PA

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): This proposal will support the development of Dr. Bradley S. Marino into an independent physician scientist in patient-oriented research. The candidate's early work as a clinical investigator has focused on outcomes in pediatric cardiovascular disease. With the support of Dr. Anne Kazak and other mentors, Dr. Marino has created a program of formal coursework and individual tutorials to be completed over a 5-year period. The coursework in epidemiology, health measurement, child development, and family dynamics will improve his skills in outcomes research and his understanding of child psychology and patient-family interactions. Cardiac disease is the most common congenital defect found in children. Mortality rates for pediatric heart disease have fallen over the last two decades. Morbidity related to the specific cardiac abnormality and the medical and surgical treatment received by the child have physical and psychological effects on the child and family that may have an adverse effect on their quality of life (QOL). Dr. Marino has recently completed the development of the Pediatric Cardiac Quality of Life Inventory (PCQLI), and he proposes to extend this research and test the scores of the PCQLI in a multi-center, multi-national study in the United States (U.S.) and the United Kingdom (U.K.) in children (age 8-12 years old) and adolescents (age 13-18 years old) with heart disease. This study has four specific aims: Aim 1" To demonstrate the reliability of the scores generated by the PCQLI. Aim 2: To demonstrate the validity of the scores generated by the PCQLI. Aim 3: To demonstrate responsiveness to chanqe of the scores generated by the PCQLI. Aim 4: To demonstrate that the present form of the PCQLI is generalizable to the other U.S. and U.K sites. When shown to be reliable, valid, responsive to change, and generalizable, the PCQLI will be a valuable new tool for both clinicians and researchers to assess QOL in pediatric heart disease, and will allow for QOL comparisons between the pediatric cardiac populations in the U.S. and the U.K. The proposed didactic and research experiences described will ensure that Dr. Marino becomes an independent physician scientist in the field of pediatric cardiovascular outcomes research.