title: Health-related quality of life outcomes in children and adolescents with congenital heart disease.
abstract: OBJECTIVE
  To compare health-related quality of life (HRQOL) in a group of pediatric patients with congenital heart disease (CHD) and healthy controls and patients with other chronic diseases, and to compare HRQOL among patients with CHD of various severity categories with one another, with controls, and with patients with other chronic diseases.
  
  
  METHODS
  In this cross-sectional survey, t tests were used to compare patient and proxy-reported Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) scores (including total, physical health, and psychosocial health summary scores) in children (aged 8-12 years) and adolescents (aged 13-18 years) between controls and (1) a composite CHD population; and (2) patients in each of 3 CHD severity categories: mild (no intervention), biventricle (BV; postintervention), and single ventricle (SV; postpalliation). PedsQL scores among CHD severity categories were compared by ANOVA. PedsQL scores were also compared in the CHD population and children with other chronic diseases without age stratification using t tests.
  
  
  RESULTS
  There were 1138 (children, n = 625; adolescents, n = 513) and 771 (children, n = 528; adolescents, n = 243) patient and/or proxy reporters in the CHD and healthy control groups, respectively. Total, physical health, and psychosocial health summary scores were lower in the composite CHD, BV, and SV groups compared with controls (P < .0001). There were significant differences among disease severity categories for all scores (P < .01). The composite CHD, BV, and SV groups had similar PedsQL scores as end-stage renal disease, asthma, and obesity populations.
  
  
  CONCLUSIONS
  Children and adolescents with BV and SV CHD have significantly lower HRQOL than healthy controls and similar HRQOL as patients with other chronic pediatric diseases. Interventions targeting both physical and psychosocial domains are needed to improve HRQOL in this high-risk population.
authors.affiliation: Division of Cardiology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH. Electronic address: katelyn.mellion@rockets.utoledo.edu.
authors.forename: Katelyn
authors.initials: K
authors.lastname: Mellion
authors.affiliation: Division of Cardiology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
authors.forename: Karen
authors.initials: K
authors.lastname: Uzark
authors.affiliation: Department of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
authors.forename: Amy
authors.initials: A
authors.lastname: Cassedy
authors.affiliation: Division of Behavioral and Clinical Psychology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
authors.forename: Dennis
authors.initials: D
authors.lastname: Drotar
authors.affiliation: Division of Cardiology, Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, PA.
authors.forename: Gil
authors.initials: G
authors.lastname: Wernovsky
authors.affiliation: Division of Cardiology, Department of Pediatrics, Children's Hospital Boston, Boston, MA.
authors.forename: Jane W
authors.initials: JW
authors.lastname: Newburger
authors.affiliation: Division of Cardiology, Department of Pediatrics, University of Texas Southwestern Medical Center Dallas, Dallas, TX.
authors.forename: Lynn
authors.initials: L
authors.lastname: Mahony
authors.affiliation: Division of Cardiology, Department of Pediatrics, Children's Hospital of Wisconsin, Milwaukee, WI.
authors.forename: Kathy
authors.initials: K
authors.lastname: Mussatto
authors.affiliation: Department of Cardiology, Phoenix Children's Hospital, Phoenix, AZ.
authors.forename: Mitchell
authors.initials: M
authors.lastname: Cohen
authors.affiliation: Department of Psychology and Neuroscience, Baylor University, Waco, TX.
authors.forename: Christine
authors.initials: C
authors.lastname: Limbers
authors.affiliation: Division of Cardiology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH; Division of Critical Care Medicine, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
authors.forename: Bradley S
authors.initials: BS
authors.lastname: Marino
mesh_terms: D000293:Adolescent; D002648:Child; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis; D006331:Heart Diseases / Q000151:congenital* / Q000175:diagnosis; D006801:Humans; D008297:Male; D011788:Quality of Life; D012189:Retrospective Studies