Sunita Vohra, MD
Professor
University of Alberta, United States
Disclosure information not submitted.
Fatima Al Sayah, PhD
Research Associate
University of Alberta, United States
Disclosure information not submitted.
Charlene Robertson, MD
Pediatrician
Glenrose Rehabilitation Hospital, United States
Disclosure information not submitted.
Ari Joffe, MD
Clinical Professor
University of Alberta, United States
Disclosure information not submitted.
Gonzalo Garcia Guerra, MD
Associate Clinical Professor
University of Alberta, United States
Disclosure information not submitted.
Title: Health Related Quality of Life in 4-year-old children after open heart surgery in early infancy
Introduction: Health Related Quality of Life (HRQL) is an individual’s perception of their physical, mental, and social aspects of health. It is an important outcome measure in pediatric studies. This study investigated HRQL of children around 4 years of age who underwent open heart surgery at up to 6 weeks of life.
Methods: Data were from a prospective cohort study of patients after having heart surgery at Stollery Children’s Hospital between 2000 and 2014. At the 4.5-year visit, parents complete the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL). This is a commonly used HRQL measure that has been validated in multiple pediatric populations, including PICU patients. Our population scores were compared to a reference healthy children population and to a population of chronically ill children of a similar age. We also compared HRQL of single ventricle children with the biventricular patients, and with the population of children who required ECMO or heart transplant or have known chromosomal abnormalities.
Results: During the study period, 712 children underwent open heart surgery before or at 6 weeks of life. Of those, 119 died before the 4.5-year visit. Of the 593 eligible children, we analyzed data from 453 patients that had complete PedsQL data. Among those, 136 (30%) had a single ventricle physiology; 47 (10%) had a chromosomal abnormality; 33 (7%) required ECMO; and 14 (3%) required heart transplant before the 4.5-year visit. Our study population had a significantly worse HRQL score (mean 79.5, SD 16.29) compared to the healthy children population (mean 87.4, SD 12.67), but similar to the chronically ill children (mean 76.0, SD 19.34). The single ventricle group also had significantly lower scores (mean 72.8, SD 17.10) than the biventricular group (mean 82.4, SD 15.05). The patients who required ECMO (mean 61.8, SD 18.58), heart transplant (mean 62.5, SD 19.66), or had a chromosomal abnormality (mean 69.7, SD 19.78) had lower scores than those who didn’t.
Conclusions: The quality of life of patients with congenital heart disease who require surgical repair in early infancy is lower than that of healthy children but is similar to other chronically ill children. Hence, efforts should be made to improve the HRQL in this population.