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Background: The HeartWare ventricular assist device (HVAD) was discontinued in July 2021. The study aims to describe the impact the discontinuation the HVAD had on pediatric ventricular assist device (VAD) utilization and outcomes. Methods: The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) registry was queried for type of VAD utilization and outcomes/adverse event rates in patients with a body surface area of 0.7 to 1.4 m2. Results were compared from before and after July 2021. All patients in the registry implanted with an HVAD were reported to determine overall outcomes of these patients and define who remains on the device. Results: The HeartMate 3 (HM3) primarily replaced the HVAD in pediatric patients increasing from 29 of 258 (11%) of implants before July 2021 to 31 of 109 (29%) of implants after. A small increase in the use of the Berlin Heart EXCOR (40 of 258, 16% before to 20 of 109, 18% after) and paracorporeal continuous flow devices (116 of 258, 45% before to 58 of 109, 53% after) was also observed. The rate of ischemic stroke increased in the overall population and a decrease in bleeding complications in the EXCOR group was observed. Of the 187 pediatric patients implanted with an HVAD in the registry, 7 patients remain supported, 1 patient transitioned from the HVAD to an HM3, and 6 patients were lost to follow-up. Conclusions: The HM3 has been the primary replacement for the HVAD in the medium-sized pediatric population. The rate of ischemic stroke was higher after July 2021.

Background: Ventricular assist device (VAD) use for failed stage II palliation (S2P) is increasing with limited data on outcomes. Methods: To address this knowledge gap, we conducted a multicenter retrospective review of the Advanced Cardiac Therapies Improving Outcomes Network registry. We leveraged the registry to analyze data on the clinical course, complications, and survival of systemic VADs (SVAD) after S2P. Results: We identified 34 patients from 15 centers between 2012 and 2022 implanted at median age of 1.8 years [interquartile range (IQR) 0.9-2.7]; 85% had systemic right ventricles and all patients underwent at least one sternotomy. Preimplant, all but 1 patient had an Interagency Registry for Mechanically Assisted Circulatory Support profile of 1-2, with 62% being on ≥2 inotropes, 50% total parenteral nutrition dependent, 38% mechanically ventilated, and 20% on extracorporeal membrane oxygenation in the week preceding implant. Device strategy was variable with 70% being on continuous flow devices and the remaining on pulsatile support. Multiple device strategies were utilized in 32% of patients. Median time on VAD support was 74 days [IQR 30-186]. Adverse events were frequent and included infection (47%), strokes (29%), bleeding (26%), dialysis (15%), and respiratory failure (9%). Bleeding complications (p = 0.0004), respiratory failure (p = 0.04), and multiple inotropes preimplant (p = 0.046) were associated with in-hospital mortality. Overall survival to transplant/recovery was seen in 76% and to 1-year postexplant in 56%. Conclusion: Encouraging clinical outcomes are seen with SVAD use for failed S2P even in the face of frequent adverse events and wide center variability in device strategy. Ongoing multi-institutional collaboration is required to better understand optimal SVAD support strategies.

Background: Learning Health Networks (LHN) have evolved within medicine over the past two decades, but their integration into transplantation has been more recent. Objectives and Methods: In this paper, we describe three LHNs in end‐stage organ disease/transplantation, their common and unique features, and how their "actor‐oriented" architecture allowed for rapid adaptation to meet the needs of their patients and practitioners during the recent COVID‐19 pandemic. Result: The structure and focus of the Improving Renal Outcomes Collaborative (IROC), Starzl Network for Excellence in Pediatric Transplantation (SNEPT), and the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) are reviewed. We discuss the critical role of patient and family engagement, focusing on collaboration with Transplant Families. Finally, we review challenges common to the LHN concept and potential common areas of alignment to achieve the goal of more rapid and sustained progress to improve health in pediatric transplantation. Conclusion: LHN in transplantation are essential to accelerate knowledge dissemination and improve outcomes. [ABSTRACT FROM AUTHOR]

Purpose: Although waitlist mortality is unacceptably high, nearly half of donor heart offers are rejected by pediatric heart transplant centers. The Advanced Cardiac Therapy Improving Outcome Network (ACTION) and Pediatric Heart Transplant Society (PHTS) convened a multi‐institutional donor decision discussion forum (DDDF) aimed at assessing donor acceptance practices and reducing practice variation. Methods: A 1‐h‐long virtual DDDF for providers across North America, the United Kingdom, and Brazil was held monthly. Each session typically included two case presentations posing a real‐world donor decision challenge. Attendees were polled before the presenting centerʼs decision was revealed. Group discussion followed, including a review of relevant literature and PHTS data. Metrics of participation, participant agreement with presenting center decisions, and impact on future decision‐making were collected and analyzed. Results: Over 2 years, 41 cases were discussed. Approximately 50 clinicians attended each call. Risk factors influencing decision‐making included donor quality (10), size discrepancy (8), and COVID‐19 (8). Donor characteristics influenced 63% of decisions, recipient factors 35%. Participants agreed with the decision made by the presenting center only 49% of the time. Post‐presentation discussion resulted in 25% of participants changing their original decision. Survey conducted reported that 50% respondents changed their donor acceptance practices. Conclusion: DDDF identified significant variation in pediatric donor decision‐making among centers. DDDF may be an effective format to reduce practice variation, provide education to decision‐makers, and ultimately increase donor utilization. [ABSTRACT FROM AUTHOR]

Muscular dystrophy (MD) patients can suffer from significant cardiac disease with resultant major morbidity and mortality. The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) sought to better characterize our previously described outcomes associated with VAD therapy across multiple centers. We examined outcomes of patients with MD and dilated cardiomyopathy implanted with a durable VAD at participating centers from 9/2012 to 1/2023. A total of 48 VADs were implanted in 33 patients across 15 sites. While four patients received a VAD from 2012 to 2017, a further 29 received a VAD from 2018 to 2023. The most common MD was a dystrophinopathy (Becker, Duchenne, intermediate or affected carrier), followed by Emery-Dreifuss, Limb girdle and other MD. The median age at implant was 16.8 years (range 9.2-31.7). Seven (21%) patients were implanted as a bridge to transplant, 6 of whom survived to transplant. Of patients implanted as bridge to decision or destination therapy, 87% were alive at 1 year and 82% at 2 years. The overall frequencies of positive outcome (transplanted or alive on device) at 1 year and 2 years were 84% and 80%, respectively. Major complications included stroke (6%), sepsis (15%), tracheostomy (3%), and severe right heart failure requiring right-sided VAD (9%). Other common but not severe complications included other major infection (21%), bleeding (30%, although none required surgical intervention), and arrhythmias requiring cardioversion (15%). Longest follow-up in this cohort is now greater than 5 years on device. VADs are being increasingly utilized in the MD population and implantation can be successful, with similar complication rates to non-MD patients. Ongoing work in patient selection, assessing quality of life, and further surgical/medical optimization is needed. [ABSTRACT FROM AUTHOR]

Malnutrition is common among paediatric heart failure patients, with nutritional rehabilitation critical for survival and optimal health outcomes. Ventricular assist devices have been associated with improved growth, though additional nutritional support may be needed. Here, we report the use of human milk-based fortifiers to avoid severe malnutrition in a neonate supported on a ventricular assist device until transplantation.

We sought to develop and validate a new risk stratification score for mortality for children supported with a ventricular assist device (VAD). This retrospective, multicenter study used data from patients undergoing VAD implantation between April 2018 and February 2023 at 44 participating institutions in the Advanced Cardiac Therapies Improving Outcomes (ACTION) network. Multivariable Cox proportional-hazards modeled mortality after VAD implantation. A total of 1,022 patients were enrolled. The 1 year mortality was 19% (95% confidence interval [CI]: 16-23). The multivariable model was used to build the ACTION VADs risk stratification score with four components: ventilation, advanced organ support (dialysis or ECMO), diagnosis, and size (weight ≤5 kg). One point is added for each risk factor. Based on the sum of the risk factors, patients were classified into four classes: class 0-green (4% mortality at 1 year), class 1-yellow (16% mortality at 1 year), class 2-orange (21% mortality at 1 year), and class 3 or higher-red (42% mortality at 1 year). The score performed well, with area under the curve (AUC) of 0.72 and excellent calibration. The ACTION VADs score for mortality can be calculated easily and offers risk stratification and prognostic information for pediatric VAD candidates. This is the first validated risk assessment tool for pediatric mechanical circulatory support., Competing Interests: Disclosure: The authors have no conflicts of interest to report., (Copyright © ASAIO 2024.)

Background: Patients with Fontan failure are high-risk candidates for heart transplantation and other advanced therapies. Understanding the outcomes following initial heart failure consultation can help define appropriate timing of referral for advanced heart failure care., Methods: This is a survey study of heart failure providers seeing any Fontan patient for initial heart failure care. Part 1 of the survey captured data on clinical characteristics at the time of heart failure consultation, and Part 2, completed 30 days later, captured outcomes (death, transplant evaluation outcome, and other interventions). Patients were classified as "too late" (death or declined for transplant due to being too sick) and/or "care escalation" (ventricular assist device implanted, inotrope initiated, and/or listed for transplant), within 30 days. "Late referral" was defined as those referred too late and/or had care escalation., Results: Between 7/2020 and 7/2022, 77 Fontan patients (52% inpatient) had an initial heart failure consultation. Ten per cent were referred too late (6 were too sick for heart transplantation with one subsequent death, and two others died without heart transplantation evaluation, within 30 days), and 36% had care escalation (21 listed ± 5 ventricular assist device implanted ± 6 inotrope initiated). Overall, 42% were late referrals. Heart failure consultation < 1 year after Fontan surgery was strongly associated with late referral (OR 6.2, 95% CI 1.8-21.5, p=0.004)., Conclusions: Over 40% of Fontan patients seen for an initial heart failure consultation were late referrals, with 10% dying or being declined for transplant within a month of consultation. Earlier referral, particularly for those with heart failure soon after Fontan surgery, should be encouraged.