title: Quality of life in pediatric heart transplant recipients: a comparison with children with and without heart disease.
abstract: BACKGROUND
  Little is known about the quality of life (QOL) of children with heart disease who undergo life-saving surgery. The aim of this multicenter study was to examine self- and parent-reported QOL outcomes in pediatric heart transplant recipients.
  
  
  METHODS
  Pediatric heart transplant recipients/families (n = 174) from 7 transplant programs completed the Pediatric Quality of Life Inventory Generic Core Scales and Cardiac Module. Scores for the heart transplant sample were compared with non-transplant patients who had undergone conventional cardiac surgery and with a healthy child sample. Within the cardiac surgery group, heart disease/surgery was further categorized by severity/complexity.
  
  
  RESULTS
  Heart transplant recipients were a mean age of 10.6 ± 4.7 years at a mean time post-transplant of 6.0 ± 4.1 years. By both self-report and parent proxy report, mean scores for heart transplant recipients were significantly lower than those in healthy children for physical and psychosocial QOL, including emotional and social functioning (p < 0.001), with 31.3% self-reporting significantly impaired psychosocial QOL scores. By self-report, there were no significant differences in emotional and social mean scores between the transplant and cardiac surgery groups. Transplant recipients reported significantly fewer cardiac symptoms than children with cardiac surgery (p < 0.01). Their self-reported school functioning scores were not significantly different from children with moderate to severe disease.
  
  
  CONCLUSIONS
  Although pediatric heart transplant recipients experience significant symptomatic improvement, they remain at-risk for impaired psychosocial QOL, similar to children with residual or palliated heart disease. Assessment is needed to identify children at-risk and improve psychosocial outcomes.
authors.affiliation: Children's Hospital Medical Center, Cincinnati, Ohio, USA. karenu@med.umich.edu
authors.forename: Karen
authors.initials: K
authors.lastname: Uzark
authors.forename: Lisa
authors.initials: L
authors.lastname: Griffin
authors.forename: Rose
authors.initials: R
authors.lastname: Rodriguez
authors.forename: Meg
authors.initials: M
authors.lastname: Zamberlan
authors.forename: Paula
authors.initials: P
authors.lastname: Murphy
authors.forename: Colleen
authors.initials: C
authors.lastname: Nasman
authors.forename: Joanne
authors.initials: J
authors.lastname: Dupuis
authors.forename: Sherrie
authors.initials: S
authors.lastname: Rodgers
authors.forename: Christine A
authors.initials: CA
authors.lastname: Limbers
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
mesh_terms: D000293:Adolescent; D006348:Cardiac Surgical Procedures; D016022:Case-Control Studies; D002648:Child; D005260:Female; D005500:Follow-Up Studies; D006331:Heart Diseases / Q000523:psychology* / Q000601:surgery*; D016027:Heart Transplantation / Q000523:psychology*; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care; D010290:Parents / Q000523:psychology; D019727:Proxy / Q000523:psychology; D011584:Psychology; D011788:Quality of Life / Q000523:psychology*; D012307:Risk Factors; D057566:Self Report; D012720:Severity of Illness Index; D014180:Transplantation / Q000523:psychology*