title: Pediatric Quality of Life while Supported with a Ventricular Assist Device.
abstract: OBJECTIVE
  Ventricular assist devices (VADs) have emerged as an important treatment option for bridging pediatric patients with heart failure to transplant. VADs have shown improved survival; however, the pediatric quality of life (QoL) while on VAD support is unknown. We aimed to evaluate the QoL of our pediatric patients while supported with a VAD.
  
  
  METHODS
  In this prospective study, pediatric patients who underwent VAD placement, and their parents, were administered a generic Pediatric Quality of Life Inventory (PedsQL) 4.0 pre-VAD implant, when feasible, after the acute postoperative period, and then periodically until heart transplant or death. Their final scores while on support were compared with three previously reported groups: healthy controls, outpatients with severe heart disease, and children after heart transplant.
  
  
  RESULTS
  From January 2008 to July 2014, 13 pediatric patients required VAD support greater than 2 weeks and completed a PedsQL. The mean age at implant was 10.0 ± 4.2 years and median duration of support was 1.6 (0.5-19.7) months. Eleven (85%) patients survived to transplant with one (8%) patient remaining alive on support. The median duration of support prior to their final PedsQL was 1.4 (0.5-11.4) months. Patients self-reported significantly (P < .05) lower total and physical QoL scores when compared with all three comparison groups. Self-reported psychosocial QoL scores were significantly lower than healthy controls only. Parent proxy-reported scores were significantly lower than all three comparison groups for all three categories (P < .05).
  
  
  CONCLUSIONS
  A large deficit exists in the total QoL of pediatric patients supported by a VAD compared with outpatient management of severe heart disease or postheart transplant patients; however, VAD patients do represent a group with more severe heart failure. Improvements in QoL must be made, as time spent with a VAD will likely continue to increase.
authors: Section of Pediatric Cardiothoracic Surgery, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Jacob R
authors: JR
authors: Miller
authors: Section of Pediatric Cardiothoracic Surgery, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Umar S
authors: US
authors: Boston
authors: Section of Pediatric Cardiothoracic Surgery, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Deirdre J
authors: DJ
authors: Epstein
authors: Division of Cardiothoracic Surgery, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Matthew C
authors: MC
authors: Henn
authors: Division of Cardiothoracic Surgery, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Christopher P
authors: CP
authors: Lawrance
authors: Section of Pediatric Cardiothoracic Surgery, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Jacob
authors: J
authors: Kallenbach
authors: Section of Pediatric Cardiology, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Kathleen E
authors: KE
authors: Simpson
authors: Section of Pediatric Cardiology, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Charles E
authors: CE
authors: Canter
authors: Section of Pediatric Cardiothoracic Surgery, Washington University School of Medicine, St. Louis, Mo, USA.
authors: Pirooz
authors: P
authors: Eghtesady
mesh_terms: D000293:Adolescent; D000367:Age Factors; D016022:Case-Control Studies; D002648:Child; D002675:Child, Preschool; D005260:Female; D006333:Heart Failure / Q000175:diagnosis / Q000401:mortality / Q000503:physiopathology / Q000523:psychology / Q000628:therapy*; D016027:Heart Transplantation; D006353:Heart-Assist Devices; D006801:Humans; D008297:Male; D011446:Prospective Studies; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome; D016276:Ventricular Function; D014850:Waiting Lists
keywords: Heart Failure; Pediatric; Quality of Life; Ventricular Assist Device