Equity and center variation in listing status exceptions for pediatric heart transplant candidates since pediatric review board implementation.

Background: A pediatric national heart review board (NHRB) and exception guidance document to standardize decision-making were implemented in 2021 to reduce variability and ensure equity in status exceptions for pediatric candidates. We evaluated the hypothesis that these changes decreased center variability and racial disparities within the granted exceptions.

Methods: Guidance document and pediatric NHRB were operational by February and June 2021, respectively.

Critical care therapies pre- and post-heart transplant and their impact: Analysis from the Pediatric Cardiac Critical Care Consortium.

Background: Few studies highlighting the critical care management of patients after heart HTx (HTx) have been published to date. This analysis provides a contemporary representation of pre- and post-HTx critical care in various patient cohorts and outlines the impact of intensive care unit (ICU) therapies on outcomes.

Methods: Data from PC4 Collaborative Registry were analyzed for pediatric patients undergoing HTx between August 2014 and April 2022.

DQB1 antigen matching improves rejection-free survival in pediatric heart transplant recipients.

Background: Presence of donor-specific antibodies (DSAs), particularly to class II antigens, remains a major challenge in pediatric heart transplantation. Donor-recipient human leukocyte antigen (HLA) matching is a potential strategy to mitigate poor outcomes associated with DSAs. We evaluated the hypothesis that antigen mismatching at the DQB1 locus is associated with worse rejection-free survival.

An in vitro comparison of intra-operative isohemagglutinin and human leukocyte antigen removal techniques in pediatric heart transplantation.

Background: Highly sensitized pediatric patients awaiting heart transplantation experience longer wait times and thus higher waitlist mortality. Similarly, children less than 2 years of age have increased waitlist times and mortality when compared to their older peers. To improve the likelihood of successful transplantation in these patients, various strategies have been utilized, including peri-operative plasmapheresis.

Novel uses for implanted haemodynamic monitoring in adults with subaortic right ventricles.

Background: Pulmonary hypertension (PH) is a common complication in patients with complete dextro-transposition of the great arteries (TGA) after atrial switch (D-TGA/AS) and congenitally corrected TGA (ccTGA). In this population with subaortic right ventricles (sRVs), echocardiography is a poor screening tool for PH; implantable invasive haemodynamic monitoring (IHM) could be used for this purpose, but data are limited. The aim of this study is to report on novel uses of IHM in patients with sRV.

Three decades of collaboration through the Pediatric Heart Transplant Society Registry: A journey through registry data with a highlight on children with single ventricle anatomy.

Background: The Pediatric Heart Transplant Society (PHTS) Registry was founded 30 years ago as a collaborative effort among like-minded providers of this novel life-saving technique for children with end-stage heart failure. In the intervening decades, the data from the Registry have provided invaluable knowledge to the field of pediatric heart transplantation. This report of the PHTS Registry provides a comprehensive look at the data, highlighting both the longevity of the registry and one unique aspect of the PHTS registry, allowing for exploration into children with single ventricle anatomy.

Improving Situational Awareness to Decrease Emergency ICU Transfers for Hospitalized Pediatric Cardiology Patients.

Introduction: Failure to recognize and mitigate critical patient deterioration remains a source of serious preventable harm to hospitalized pediatric cardiac patients. Emergency transfers (ETs) occur 10-20 times more often than code events outside the intensive care unit (ICU) and are associated with morbidity and mortality. This quality improvement project aimed to increase days between ETs and code events on an acute care cardiology unit (ACCU) from a baseline median of 17 and 32 days to ≥70 and 90 days within 12 months.

Successful implementation of telehealth visits in the paediatric heart failure and heart transplant population.

The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) and Pediatric Heart Transplant Society (PHTS) convened a working group at the beginning of 2020 during the COVID-19 pandemic, with the aim of using telehealth as an alternative medium to provide quality care to a high-acuity paediatric population receiving advanced cardiac therapies. An algorithm was developed to determine appropriateness, educational handouts were developed for both patients and providers, and post-visit surveys were collected. Telehealth was found to be a viable modality for health care delivery in the paediatric heart failure and transplant population and has promising application in the continuity of follow-up, medication titration, and patient education/counselling domains.

Racial and socioeconomic disparities in status exceptions for pediatric heart transplant candidates under the current U.S. Pediatric Heart Allocation Policy.

Background: The 2016 revision of the US Pediatric Heart Allocation Policy developed stringent rules for priority status creating impetus for clinicians to seek status exceptions. We hypothesized there may be differential status exceptions based on race and socioeconomic status (SES) contributing to disparities in waitlist outcomes.

Methods: The Scientific Registry for Transplant Recipients was queried for children listed for heart transplant from 2012 to 2020.

Increasing the Percentage of Neonates Consuming Human Milk in a Pediatric Cardiothoracic Intensive Care Unit: A Quality Improvement Initiative.

Objective: To address a known nutritional deficit and enhance the overall health of critically ill babies, this project sought to increase the percentage of cardiothoracic intensive care unit (CTICU) neonates consuming human milk from a 2019 baseline of 55% to 75% by December 2020 and 90% by December 2021.

Study Design: This was a quality improvement initiative targeted to all neonates admitted to the CTICU, with baseline data obtained from January 2019 through February 2020. We implemented 11 interventions from March 2020 to January 2022 to address the key drivers of "education of parents and providers," "environment/equipment," and "process.

Proactive risk mitigation for cardiac arrest prevention in high-risk patients with congenital heart disease.

Objective: The prevalence of postoperative cardiac arrest (CA) increases with cardiothoracic surgical case complexity and is associated with a 40% to 50% mortality. Despite having a low overall surgical mortality rate at our center, our postoperative CA rates were higher than expected, with an observed-to-expected ratio of 2.6.

Considerations for Advanced Heart Failure Consultation in Individuals With Fontan Circulation: Recommendations From ACTION.

Individuals with Fontan circulation are at risk of late mortality from both cardiac and noncardiac causes. Despite the known risk of mortality, referral indications for advanced heart failure care vary between centers, and many individuals die from Fontan circulation-related complications either after late consideration for advanced heart failure therapies or having never seen a heart failure specialist. There is a critical need for guidelines to direct appropriately timed referral for advanced heart failure consultation.

Worsening racial disparity in waitlist mortality for pediatric heart transplant candidates since the 2016 Pediatric Heart Allocation Policy revision.

Background: The US Pediatric Heart Allocation Policy (PHAP) was revised in March 2016, with the goal of reducing waitlist mortality. We evaluated the hypothesis that these changes, which increased status exceptions, have worsened racial disparities in waitlist outcomes.

Methods: Children in the Pediatric Heart Transplant Study database listed for first heart transplant from January 2012 - June 2020 were included and stratified by listing before (Era 1) or after (Era 2) the PHAP revision.

Data-driven computational models of ventricular-arterial hemodynamics in pediatric pulmonary arterial hypertension.

Pulmonary arterial hypertension (PAH) is a complex disease involving increased resistance in the pulmonary arteries and subsequent right ventricular (RV) remodeling. Ventricular-arterial interactions are fundamental to PAH pathophysiology but are rarely captured in computational models. It is important to identify metrics that capture and quantify these interactions to inform our understanding of this disease as well as potentially facilitate patient stratification.

Outcomes of infants with pulmonary atresia with intact ventricular septum listed for heart transplantation: A multi-institutional study.

Background: Management of infants with pulmonary atresia/intact ventricular septum (PA/IVS) is variable. Because of higher mortality in more severe forms, heart transplant (HT) is an acceptable approach, but waitlist and post-transplant outcomes are unclear. This study compared outcomes of infants with PA/IVS vs.

Decreased Risk of Strokes in Children with Ventricular Assist Devices Within ACTION.

We sought to characterize strokes in children with ventricular assist devices. Of 407 patients in the ACTION registry (4/1/18-5/3/2021), 45 (11%) experienced 52 strokes (45 ischemic and 7 hemorrhagic). Median time to stroke was 23.

Standardization of Care Reduces Length of Stay for Postoperative Congenital Heart Disease Patients.

Unlabelled: Congenital heart disease (CHD), the most common congenital malformation, often requires surgical correction. As surgical mortality rates are low, a common quality marker linked with surgical outcomes is hospital length of stay (LOS). Reduced LOS is associated with better long-term outcomes, reduced hospital-acquired complications, and improved patient-family satisfaction.

Evidence-Based Guidelines for Acute Stabilization and Management of Neonates with Persistent Pulmonary Hypertension of the Newborn.

Persistent pulmonary hypertension of the newborn, or PPHN, represents a challenging condition associated with high morbidity and mortality. Management is complicated by complex pathophysiology and limited neonatal specific evidence-based literature, leading to a lack of universal contemporary clinical guidelines for the care of these patients. To address this need and to provide consistent high-quality clinical care for this challenging population in our neonatal intensive care unit, we sought to develop a comprehensive clinical guideline for the acute stabilization and management of neonates with PPHN.

The Diagnostic Error Index: A Quality Improvement Initiative to Identify and Measure Diagnostic Errors.

Objective: To develop a diagnostic error index (DEI) aimed at providing a practical method to identify and measure serious diagnostic errors.

Study Design: A quality improvement (QI) study at a quaternary pediatric medical center. Five well-defined domains identified cases of potential diagnostic errors.

Pediatric donor heart allocation in the United States, 2006-2017: Current patterns and potential for improvement.

Objective: To understand current donor heart allocation practices for pediatric transplantation.

Background: Despite high waitlist mortality rates among pediatric patients awaiting transplant, a substantial proportion of donor hearts go unused. Analysis of UNOS match run data may identify opportunities to optimize organ utilization.

The Creation of a Pediatric Health Care Learning Network: The ACTION Quality Improvement Collaborative.

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.

Guidelines for Diuretic Utilization Reduce High Charge Medications.

Unlabelled: Decreasing practice variation and following evidence-based clinical guidelines improve patient outcomes and often reduce cost. Essentially all postsurgical cardiac patients require diuretics. The approach to diuresis in the pediatric cardiothoracic intensive care unit (CTICU) is not standardized.

Prevention of Pressure Ulcers in a Pediatric Cardiac Intensive Care Unit.

Background: Pressure ulcer (PU) is an injury to skin or underlying tissue as a result of pressure or pressure with shear stress. We classify PUs by the level of tissue injury: stage I-IV, unstageable, suspected deep tissue injury. This quality project was aimed to reduce the incidence of PUs stage II in the cardiothoracic intensive care unit.