Self-Reported Quality of Life in Children on Ventricular Assist Devices: A Pedimacs Analysis

2021 
Purpose Given the paucity of data on quality of life (QOL) after ventricular assist device (VAD) implant in children, we sought to describe self-reported QOL in children on VAD support and to identify potential factors associated with impaired QOL. Methods There were 82 children (6-19 y) in the Pediatric Interagency Registry for Mechanical Circulatory Support who completed the generic Pediatric Quality of Life Inventory (PedsQL) +/- a VAD-specific QOL assessment pre-VAD implant (n=18), 3 months (m) post-VAD (n=62) and/or 6 m post VAD (n=38). Their QOL was compared to the general pediatric population, children with a chronic health condition, and children with severe/complex heart disease. Significantly impaired QOL is a score >1 SD below the pediatric population mean. Results The study group was 59% male, 67% Caucasian, with a primary diagnosis of cardiomyopathy in 82%, and a median age at 1st implant of 14 y (IQR 11-17). At 3 m and 6 m post-VAD, 63% and 81% were outpatient. PedsQL scores were lower than pediatric norms for physical (p 2 weeks/ongoing post-VAD (p =.04), but was not associated with age at implant, primary diagnosis, hospital length of stay, adverse events or re-hospitalizations within 3 m post-implant, or with discharge status at 3 m post-VAD. Conclusion Physical QOL is significantly impaired in the majority of patients pre- and post-VAD. However, psychosocial QOL is not significantly impaired in nearly 3/5 patients at 3 m post-VAD. While the study was limited by the small number of patients who had more than one assessment over time, group data suggest VAD implantation may improve psychosocial QOL.
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