Motor outcome, executive functioning, and health‐related quality of life of children, adolescents, and young adults after ventricular assist device and heart transplantation

Abstract

ObjectiveThe aim of the current study is to measure long‐term executive function, motor outcome, and QoL in children, adolescents, and young adults after VAD and Htx.MethodsPatients were examined during routine follow‐up. Investigation tools were used as follows: Examination for MND of motor outcomes, Epitrack® for attention and executive functioning, and Kidscreen‐52 and EQ‐5D‐5L questionnaires for QoL. Additional data were retrospectively obtained by an analysis of patient medical records.ResultsOut of 145 heart transplant recipients at the department of pediatric cardiology of the University Hospital Munich, 39 were implanted with a VAD between 1992 and 2016. Seventeen (43.6%) patients died before or after Htx; 22 (56.4%) patients were included in our study. Mean age at transplant was 9.52 years (range: 0.58‐24.39 years, median 9), and the mean follow‐up time after Htx was 6.18 years (range: 0.05‐14.60 years, median 5.82). MND examination could be performed in 13 patients (normal MND: n = 11, simple MND: n = 1, complex MND: n = 1). Executive functioning was tested in 15 patients. Two (13.3%) patients had good results, six (40%) average results, three (20%) borderline results, and four (26.7%) impaired results. QoL (Kidscreen n = 7, EQ‐5D‐5L n = 8) was similar to a healthy German population.ConclusionMotor outcome, executive functioning and QoL in survivors of VAD bridging therapy and Htx can be good, though underlying diseases and therapies are associated with a high risk of cerebral ischemic or hemorrhagic complications.

Psychosocial outcomes in pediatric patients with ventricular assist devices and their families: A systematic review

“…These findings are largely consistent with previous reviews across other chronic illness groups, including elevated rates of parenting stress and poorer family functioning among pediatric organ transplant recipients 11 and deficits in psychological functioning among youth with severe congenital heart disease. 36 Much of the extant literature suggests that while pediatric patients on VAD support experience HRQOL comparable to that of healthy peers and other chronic illness populations, 20,23,24 VAD implantation was associated with elevated rates of psychiatric diagnosis and treatment 21,32 and reported negative feelings about their VAD. 25,30,35 In non-VAD pediatric cardiology populations, HRQOL was found to be more comparable to that of healthy peers than those with other chronic conditions, such as spina bifida.…”

“…Three studies reported HRQOL comparable to that of healthy peers. 20,23,24 Among 21 pediatric patients who were bridged to transplant with VAD support, no significant differences in HRQOL outcomes were found when compared to pediatric patients who received a heart transplant without prior VAD support or pediatric patients with other cardiovascular diseases. 23 Only one study reported poorer HRQOL when comparing pediatric patients supported by VADs to healthy peers, pediatric patients who experienced a heart transplant without VAD support, and pediatric patients with heart disease.…”

“…The majority of studies established inclusion criteria and consistent selection procedures (n = 12; 75%), [20][21][22][23][24][25][26][27][28][29][30][31] defined the study population, including time period and geographical location of recruitment (n = 11; 69%), 20,21,[23][24][25][26][27][28][29][30][31] and utilized defined outcomes with validated measures (n = 11; 69%). 20,21,23,24,26,27,29,[31][32][33][34] Ten studies (63%) reported a participation rate of greater than 50%, [20][21][22][23][24][25][26][27]29,31 though the remaining six studies did not report participation or attrition results. Notably, few studies justified sample size or utilized effect sizes (n = 4; 25%), 21,29,30,…”

“…Notably, few studies justified sample size or utilized effect sizes (n = 4; 25%), 21,29,30,35 and few statistically considered potential confounding variables in analyses (n = 4; 25%), 21,23,26,29 though six studies utilized qualitative data and thematic analyses, and thus statistical assessment of confounding variables was rated NA. 22,25,28,30,33,35 Based on the results of this quality assessment, 50% of included studies were rated as "good" quality (n = 8) 20,21,23,24,26,27,29,31 and 50% of included studies were rated as "fair" quality (n = 8). 22,25,28,30,[32][33][34][35] No studies were excluded from the current literature reviewed based on the quality assessment.…”

“…29 Similarly, the majority of participants in a sample of pediatric patients supported by VAD therapy scored in the "good" to "average" range across measures of executive functioning and motor control. 20 31 Thus, the available literature is mixed as to whether VAD support is associated with poorer cognitive functioning among this population.…”