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. CONCLUSION: 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.
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. CONCLUSION: 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: Maureen A Lefton-Greif; Sande O Okelo; Jennifer M Wright; Joseph M Collaco; Sharon A McGrath-Morrow; Michelle N Eakin Journal: Dysphagia Date: 2014-08-27 Impact factor: 3.438
Authors: Melissa K Cousino; Victoria A Miller; Cynthia Smith; Karen Uzark; Ray Lowery; Nichole Rottach; Elizabeth D Blume; Kurt R Schumacher Journal: Palliat Med Date: 2019-10-24 Impact factor: 4.762
Authors: A Lawitschka; E D Güclü; J W Varni; M Putz; D Wolff; S Pavletic; H Greinix; C Peters; R Felder-Puig Journal: Bone Marrow Transplant Date: 2014-05-12 Impact factor: 5.483
Authors: Marissa N Contento; Rachel N Vercillo; Laura Malaga-Dieguez; Laura Jane Pehrson; Yuyan Wang; Mengling Liu; Zoe Stewart; Robert Montgomery; Howard Trachtman Journal: Kidney Med Date: 2020-03-17
Authors: Angela C Chen; Faustine D Ramirez; David N Rosenthal; Sarah C Couch; Samuel Berry; Katie J Stauffer; Jerrid Brabender; Nancy McDonald; Donna Lee; Lynsey Barkoff; Susan E Nourse; Jeffrey Kazmucha; C Jason Wang; Inger Olson; Elif Seda Selamet Tierney Journal: J Am Heart Assoc Date: 2020-01-24 Impact factor: 5.501