Learning networks in pediatric heart failure and transplantation

O’Connor, Matthew J.; Lorts, Angela; Kwiatkowski, David M.; Butts, Ryan J.; Barnes, Aliessa P.; Jeewa, Aamir; Knoll, Christopher; Fenton, Matthew J.; McQueen, Melissa; Cousino, Melissa K.; Shugh, S.; Rosenthal, David N.

doi:10.1111/petr.14073

Cited by 12 publications

(6 citation statements)

References 39 publications

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Section: Introductionmentioning

confidence: 82%

“…In addition, this collaborative serves as a learning network for device management in which education, harmonization of practice, and quality improvement projects are driven to improve the outcomes of its member institutions. 10 Similar collaboratives have reported improved outcomes in other facets of pediatric cardiology. 11 In this study, we describe the use of VADs among patients with DCM of different weight cohorts and describe associated short-and midterm clinical outcomes using the multicenter adjudicated ACTION registry to describe the contemporary pediatric center experience with this disease.…”

Section: Introductionmentioning

confidence: 82%

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Impact of Weight on Ventricular Assist Device Outcomes in Dilated Cardiomyopathy Patients in Pediatric Centers: An ACTION Registry Study

et al. 2023

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Ventricular assist device (VAD) options vary for children in different weight groups. This study evaluates contemporary device usage and outcomes for children based on weight. Data from the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) registry were examined for patients with dilated cardiomyopathy (DCM) in 4 weight cohorts: <8 kg, 8–20 kg, 21–40 kg, and >40 kg, for devices implanted 3/2013–10/2020. Adverse event rates and ultimate outcome (deceased, alive on device, transplanted, or ventricular recovery) were analyzed. 222 DCM patients were identified with 24% in cohort 1, 23% in cohort 2, 15% in cohort 3, and 38% in cohort 4. Of 272 total implants, paracorporeal pulsatile devices were most common (95%) in cohorts 1 and 2 and intracorporeal continuous devices (81%) in cohorts 3 and 4. Stroke was noted in 17%, 12%, 6%, and 4% of cohorts, respectively (Cohort 1 vs. 4 and 2 vs. 4 – p = 0.01; other comparisons – not significant). Incidences of major bleeding, device malfunction, and infection was not different. All cohorts had >90% positive outcomes. Stroke incidence was higher in smaller cohorts, but other outcomes were similar. Positive outcomes were attained in over 90% across all weight groups, demonstrating excellent outcomes using current VADs in this DCM population.

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Section: Introductionmentioning

confidence: 82%

Section: Introductionmentioning

confidence: 82%

Impact of Weight on Ventricular Assist Device Outcomes in Dilated Cardiomyopathy Patients in Pediatric Centers: An ACTION Registry Study

et al. 2023

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“…ACTION (Advanced Cardiac Therapies Improving Outcomes Network) has demonstrated the feasibility of collecting patient-reported outcomes (PROs), including HRQOL, in pediatric and young adult patients pre-VAD implant and throughout the VAD course. Continued study of the utility of PROs to inform clinical practice and predict outcomes is needed [ 38 , 39 ]. This can be accomplished through multi-center learning network collaborations and registries, such as those hosted by ACTION and Pedimacs.…”

Section: Discussionmentioning

confidence: 99%

Primary Disease, Sex, and Racial Differences in Health-Related Quality of Life in Adolescents and Young Adults with Heart Failure

et al. 2022

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Health-related quality of life (HRQOL) is an important clinical and research trial endpoint in adult heart failure and has been shown to predict mortality and hospitalizations in adult heart failure populations. HRQOL has not been adequately studied in the growing pediatric and young adult heart failure population. This study described HRQOL in adolescents and young adults (AYAs) with heart failure and examined primary disease, sex, race, and other correlates of HRQOL in this sample. Participants in this cross-sectional, single-center study included adolescent and young adults with heart failure and a parent/guardian. Patients and their parent/proxies completed the PedsQL, a well-established measure of HRQOL in pediatric chronic illness populations. HRQOL is impaired in AYAs with heart failure resulting from dilated, hypertrophic, or other cardiomyopathy, congenital heart disease, or post-transplant with rejection/complications. Patients identifying as white endorsed poorer total HRQOL than non-white patients ( p = 0.002). Subscale analysis revealed significant correlations between female sex ( p = 0.01) and white race ( p = 0.01) with poorer self-reported physical functioning. Family income was unrelated to HRQOL. Functional status was strongly associated with total ( p = 0.0003) and physical HRQOL ( p < 0.0001). Sociodemographic and disease-specific risk and resilience factors specific to HRQOL in AYAs with heart failure include primary cardiac disease, race, sex, and functional status. Building upon extensive work in adult heart failure, utilization, and study of HRQOL as a clinical and research trial outcome is necessary in pediatric heart failure. Developing targeted interventions for those at greatest risk of impaired HRQOL is an important next step.

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“…Much of the knowledge we have on the use of bivalirudin for ECMO in pediatrics is based on the experience from our ventricular assist device (VAD) colleagues for the berlin EXCOR [50]. Harmonization documents developed by the Advanced Cardiac Therapies Improving Outcomes Network (ACTION), a network for children with heart failure and those being supported with a VAD, have taught us a great deal in management, but experience specific to ECMO in children with congenital heart disease is imperative [51].…”

Section: Anticoagulationmentioning

confidence: 99%

Extracorporeal Membrane Oxygenation in Congenital Heart Disease

et al. 2022

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Mechanical circulatory support (MCS) is a key therapy in the management of patients with severe cardiac disease or respiratory failure. There are two major forms of MCS commonly employed in the pediatric population—extracorporeal membrane oxygenation (ECMO) and ventricular assist device (VAD). These modalities have overlapping but distinct roles in the management of pediatric patients with severe cardiopulmonary compromise. The use of ECMO to provide circulatory support arose from the development of the first membrane oxygenator by George Clowes in 1957, and subsequent incorporation into pediatric cardiopulmonary bypass (CPB) by Dorson and colleagues. The first successful application of ECMO in children with congenital heart disease undergoing cardiac surgery was reported by Baffes et al. in 1970. For the ensuing nearly two decades, ECMO was performed sparingly and only in specialized centers with varying degrees of success. The formation of the Extracorporeal Life Support Organization (ELSO) in 1989 allowed for the collation of ECMO-related data across multiple centers for the first time. This facilitated development of consensus guidelines for the use of ECMO in various populations. Coupled with improving ECMO technology, these advances resulted in significant improvements in ECMO utilization, morbidity, and mortality. This article will review the use of ECMO in children with congenital heart disease.

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Learning networks in pediatric heart failure and transplantation

Cited by 12 publications

References 39 publications

Impact of Weight on Ventricular Assist Device Outcomes in Dilated Cardiomyopathy Patients in Pediatric Centers: An ACTION Registry Study

Impact of Weight on Ventricular Assist Device Outcomes in Dilated Cardiomyopathy Patients in Pediatric Centers: An ACTION Registry Study

Primary Disease, Sex, and Racial Differences in Health-Related Quality of Life in Adolescents and Young Adults with Heart Failure

Extracorporeal Membrane Oxygenation in Congenital Heart Disease

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