Pediatric Quality of Life while Supported with a Ventricular Assist Device

Objective Ventricular assist devices ( VAD s) 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 P ediatric Q uality of L ife I nventory ( 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 J anuary 2008 to J uly 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.