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Improving the outcomes of pediatric patients with congenital heart disease with end-stage heart failure depends on the collaboration of all stakeholders; this includes providers, patients and families, and industry representatives. Because of the rarity of this condition and the heterogeneity of heart failure etiologies that occur at pediatric centers, learnings must be shared between institutions and all disciplines to move the field forward. To foster collaboration, excel discovery, and bring data to the bedside, a new, collaborative quality improvement science network-ACTION (Advanced Cardiac Therapies Improving Outcomes Network)-was developed to meet the needs of the field. Existing gaps in care and the methods of improvement that will be used are described, along with the mission and vision, utility of real-world data for regulatory purposes, and the organizational structure of ACTION is described.

Infections in adult ventricular assist device patients increase subsequent mortality and stroke risk. Less is known about outcomes after infections in younger patients, where diabetes and obesity, risk factors associated with poor outcomes, are less prevalent. The purpose of this study was to examine outcomes after infections in adolescents and young adults with continuous-flow left ventricular assist devices (VAD) bridged to transplant. From Pediatric Interagency Registry for Mechanically Assisted Circulatory Support and Interagency Registry for Mechanical Circulatory Support registries, we identified patients aged 12-29 years with continuous-flow VADs implanted as bridged to transplant from September 2012 to March 2016. The primary predictor variable was first reported infection. The primary outcome was death on VAD support; secondary outcome was clinical stroke. Kaplan-Meier and Cox proportional hazard methods were used to compare outcomes between patients before or without infection and patients after infection. Ninety-two adolescents (12-18 years of age) and 224 young adults (19-29 years of age) with 3,748 patient-months of follow-up were included. Adolescents were smaller (body surface area 1.7 vs. 2.0 m, p < 0.01) and implanted at higher Interagency Registry for Mechanical Circulatory Support profiles (p = 0.005); there were no differences in diabetes and obesity, and survival on VAD was similar (p = 0.22). Among adolescents but not young adults, mortality increased after infection (hazard ratio 8.2, 95% confidence interval 1.6-42.6, p = 0.01). In contrast, stroke risk increased after infection in young adults (hazard ratio 3.1, 95% confidence interval 1.3-7.6, p = 0.01) but not in adolescents. Despite similar underlying risk factors, adolescents have increased mortality after infections, whereas young adults have increased strokes after infections. Both pre- and postimplant factors likely contribute to the discrepancy in outcomes between the two age cohorts.

As continuous-flow ventricular assist devices (CF-VADs) are used increasingly in children and adolescents, more pediatric patients will be supported as outpatients. Herein we report the patterns of rehospitalization after CF-VAD implantation at a single center. We retrospectively reviewed the medical records of 19 consecutive patients who received CF-VADs between December 6, 2010 and November 5, 2016 and were discharged on device therapy. The frequency, duration, and indications for all hospitalizations between the time of implant hospitalization discharge and January 8, 2016 were analyzed. There were a total of 52 rehospitalization episodes in 16 (84%) patients over 5,101 (median 93, interquartile range [IQR] 38, 226) follow-up days. There were a median of two (IQR 1, 3) hospitalizations per patient. The median time to first hospitalization was 14 (IQR 7, 62) days. The most common admitting diagnoses were suspected infection 13 (28%) and suspected pump thrombosis in 8 (17%). Thirty-one (60%) hospitalizations included procedures, including seven (13%) requiring device-related surgery. Overall, 89% of postimplant discharge days were spent outside of the hospital. Children with CF-VADs can be discharged with acceptable readmission rates and significant time spent out of hospital. Most patients will be rehospitalized at least once between implant hospitalization and transplantation, often within 2 weeks of hospital discharge, with the most common indications for admission being suspected infection and suspected pump thrombosis. Device-related complications necessitating surgical intervention most frequently occur in destination therapy patients who are supported for longer periods of time.

Outpatient experience of children supported with continuous-flow ventricular assist devices (CF-VAD) is limited. We reviewed our experience with children discharged with CF-VAD support. All pediatric patients

Centrifugal blood pumps are being increasingly utilized in children supported with extracorporeal membrane oxygenation (ECMO). Our aim was to determine if survival and ECMO-related morbidities in children supported with venoarterial (VA) ECMO differed by blood pump type.Children aged less than 18 years who underwent VA ECMO support from 2007 to 2009 and reported to the Extracorporeal Life Support Organization registry were propensity score matched (Greedy 1:1 matching) using pre-ECMO characteristics.A total of 2,656 (centrifugal = 2,231, roller = 425) patients were identified and 548 patients (274 per pump type) were included in the propensity score-matched cohort. Children supported with centrifugal pumps had increased odds of hemolysis (odds ratio [OR], 4.03 95% confidence interval [CI], 2.37-6.87), hyperbilirubinemia (OR, 5.48; 95% CI, 2.62-11.49), need for inotropic support during ECMO (OR, 1.54; 95% CI, 1.09-2.17), metabolic alkalosis (blood pH > 7.6) during ECMO (OR, 3.13; 95% CI, 1.49-6.54), and acute renal failure (OR, 1.61; 95% CI, 1.10-2.39). Survival to hospital discharge did not differ by pump type.In a propensity score-matched cohort of pediatric ECMO patients, children supported with centrifugal pumps had increased odds of ECMO-related complications. There was no difference in survival between groups.