Self-reported quality of life in children with ventricular assist devices

Background: We sought to describe QOL in children with VAD and to identify factors associated with impaired QOL. Methods: There were 82 children (6–19 years) in the Pediatric Interagency Registry for Mechanical Circulatory Support who completed the PedsQL +/− a VAD-specific QOL assessment pre-VAD implant (n = 18), 3 months post-VAD (n = 63), and/or 6 months post-VAD (n = 38). Significantly impaired QOL is a score >1 SD below norms. Results: Study patients were 59% male, 67% Caucasian, with cardiomyopathy diagnosis in 82%, and median age at implant of 14 y (IQR 11–17). PedsQL scores were lower than norms for physical (p <.0001) and psychosocial (p <.01) QOL in pre- and post-VAD groups. Compared to chronic health condition and complex or severe heart disease groups, PedsQL scores were lower for physical and psychosocial QOL in the pre-VAD group (p <.0001); however, psychosocial QOL was not significantly different in post-VAD groups. Psychosocial QOL was impaired in 67%, 40%, and 24% in pre-VAD, 3-month, and 6-month post-VAD groups, respectively. Total and psychosocial QOL scores were significantly higher in the 3-month and 6-month post-VAD group than pre-VAD (all p ≤.02). VAD patients were most bothered by their inability to participate in usual play activities. Impaired QOL 3 months post-VAD was associated with inotropic support >2 weeks/ongoing post-VAD (p =.04). Conclusion: Physical QOL is significantly impaired in most children pre- and post-VAD. However, psychosocial QOL is not significantly impaired in most children post-VAD suggesting VAD implantation may improve psychosocial QOL in children.