Pediatric Quality of Life while Supported with a Ventricular Assist Device

Jacob R. Miller, Umar S. Boston, Deirdre J. Epstein, Matthew C. Henn, Christopher P. Lawrance, Jacob Kallenbach, Kathleen E. Simpson, Charles E. Canter, Pirooz Eghtesady

Research output: Contribution to journalArticle

14 Scopus citations

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. Design: 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.

Original languageEnglish
Pages (from-to)E189-E196
JournalCongenital Heart Disease
Volume10
Issue number4
DOIs
StatePublished - Jul 1 2015

Keywords

  • Heart Failure
  • Pediatric
  • Quality of Life
  • Ventricular Assist Device

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    Miller, J. R., Boston, U. S., Epstein, D. J., Henn, M. C., Lawrance, C. P., Kallenbach, J., Simpson, K. E., Canter, C. E., & Eghtesady, P. (2015). Pediatric Quality of Life while Supported with a Ventricular Assist Device. Congenital Heart Disease, 10(4), E189-E196. https://doi.org/10.1111/chd.12260