Abstract

Introduction: The Ventricular Assist Device (VAD) has emerged as an important treatment option for bridging pediatric patients with heart failure to transplant. VADs have been shown to improve survival; however, quality of life (QoL) while supported with a pediatric VAD is unknown. Methods: In this prospective study, pediatric patients, and their parents, who underwent VAD placement completed a generic PedsQL 4.0 biweekly until heart transplant or death. Data are reported at last follow-up with a VAD and compared to three previously reported groups: age-matched healthy controls, outpatients with severe heart disease and children after heart transplant. Results: From December 2007 to August 2013, 13 patients received VAD support for at least two weeks and completed a PedsQL. The mean age at implant was 10.0 ± 4.2 years with a median duration of support of 1.6 months (Table 1). Pre-implant INTERMACS profile was 1 for 3/13 (23%) and 2 for 10/13 (77%). Patients self-reported significantly (p<0.05) reduced total and physical QoL scores when compared to each of the 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 (Figure 1). Conclusion: A large deficit exists in the QoL of pediatric patients supported by a VAD compared to outpatient management of severe heart disease or post-heart transplant patients; however, VAD patients do represent a sicker group. Improvements in QoL must be made, as time spent with a VAD is expected to increase. Though a small sample, these data can serve as a baseline for future comparison.

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