RESUMEN
Extracorporeal Life Support (ECLS) is often considered successful if the child leaves intensive care alive. For the child and family, a major concern is quality of life. Aim of this study is to compare health-related quality of life scores of children following cardiac ECLS to a healthy control group. Cross-sectional prospective study using Pediatric Quality of Life Inventory 4.0 Generic Core Scale questionnaire. Population included consecutive children between two and sixteen years of age who underwent cardiac ECLS from 2005 to 2016 and their parents. Each age groups' mean and standard deviation was analyzed individually with minimal clinically important difference calculated. We then compared the scores to a healthy population group. Cronbach's alpha for reliability was calculated and linear regression assessed for relationships between demographics and quality of life scores. Forty-one (60%) families responded. The ECLS had significantly (statistically and clinically) lower health-related quality of life scores in every domain when compared to the healthy cohort. The lowest mean total score was school functioning for both children (59.79 vs 81.31, p < 0.01) and parents (59.01 vs 78.27, p < 0.01). Parents had excellent reliability (α = 0.93, 0.95 & 0.90) compared to children with reliability improving with increasing age in children. Improvements in the management of pediatric patients following ECLS are required to improve their health-related quality of life. Further research is warranted to explore the physical and psychological effects of cardiac ECLS on pediatric survivors to establish individual healthcare needs and optimize health-related quality of life.