Tuning in to Kids: A virtually delivered, group-based psychological intervention for parents to improve emotional and behavioral wellbeing among children with congenital heart disease

Nadine Kasparian, PHD, MAPS - Cincinnati Children’s Hospital

Mental health conditions are common among children with congenital heart disease (CHD) and are strongly associated with cardiovascular morbidity and mortality, and lower quality of life.  Despite increasing awareness, the mental health needs of children with CHD remain largely unmet, especially among those from underserved and historically marginalized communities.  To address this critical gap, our team will test, for the first time in CHD, a virtually-delivered, group-based psychological intervention, called Tuning in to Kids, designed to teach parents how to help their children understand, regulate, and manage their emotions. 

The primary aim of this study is to assess intervention acceptability and feasibility, and the results generated by this study will directly inform the design of, and provide preliminary data for, a multicenter efficacy trial to examine intervention effects in the short-term and long-term. This study will take an unprecedented look at how a group-based parent -focused psychological intervention can improve child emotional and behavioral regulation, and positively alter the trajectory of mental health outcomes for children with CHD.

Identification of Factors associated with superior risk adjusted survival in small volume congenital heart centers

Christopher Caldarone, MD - Congenital Heart Surgeons Society

Multiple publications have cited a relationship between high surgical volume and higher risk-adjusted survival in Congenital Heart Centers after cardiac surgical procedures. A recent consensus document has distinguished between heart centers with, among other things, annual volumes between 75-200 STS index cases/year (“Essential” Centers) and those with annual case volumes >200 STS index cases/year (“Comprehensive” centers). This may, incorrectly, lead to an inference that smaller volume centers uniformly offer lower quality care.  Inspection of the volume-outcome relationship in the publicly available STS database, however, clearly demonstrated that there are small-volume centers that obtain excellent risk-adjusted survival which is better than their small-volume peers AND, importantly, better than the majority of the highest volume centers. The factors that contribute to superior performance in these small volume centers are unknown – and are the focus of this research project. 

The specific objective of this project is to identify the factors that are associated with superior performance in small-volume centers.

A Pilot Study Evaluating the Role of Hemodynamics on the Development of Fontan Associated Liver Disease in a Long-term Ovine Survival Model

Christopher Breuer, MD - Nationwide Children’s Hospital

We propose to investigate the role of chronic venous hypertension and reduced cardiac output on the development of Fontan associated liver disease (FALD) in an ovine model using a novel subpulmonic assist device to interrogate the effect of prophylactically reducing the degree of chronic venous hypertension on the development and progression of FALD. Juvenile age and sex-matched lambs will be used for this pilot experiment. 

While the etiology of FALD remains incompletely understood, the chronic hemodynamic abnormalities associated with the Fontan circulation including chronic venous hypertension coupled with reduced preload and decreased cardiac output are purported to the be the primary drivers of this pathology. By manipulating these hemodynamic parameters, we can elucidate their role in the etiology and progression of FALD.

Optimizing and Scaling Partial Heart Transplant

Douglas Overbey, MD, MPH - Duke Children’s Hospital

This project is a continuation of a previously funded project by The Brett Boyer Foundation in 2022.  Partial Heart Transplantation represents a promising approach to provide growing heart valve replacements for newborn babies.  Despite early success and widespread interest in this revolutionary technique, there is a need for operationalization of mechanisms for organ allocation, procurement, and transplantation.  The optimal level of immune suppression required for successful partial heart transplantation and the maximum cold storage time to increase availability of and access to the procedure remain uncertain.

This project aims to evaluate:

1.     Develop and operationalize mechanisms for organ allocation, procurement and implantation

2.     Determine the effect of reduced immunosuppression on Partial Heart Transplant Viability, Growth and Function

3.     Evaluate PHT Growth and Hemodynamic Function after Optimal Banking

4.     Innovation and Impact

The goal of this project is to develop an organ allocation system that allows for equitable allocation, expand the storage time of valves for PHT and optimize the level of immune suppression required for successful partial heart transplantation.  The central hypothesis posits that partial heart transplants, focusing solely on the heart valve, necessitate substantially lower levels of immune suppression. 

Implementation of Wideband Cardiac MRI in Children with Pacemakers and Defibrillators

Gregory Webster, MD, MPH - Ann & Robert H. Lurie Children’s Hospital of Chicago

We need to reduce image artifact caused by the pulse generator and improve diagnostic quality of MRIs in CIED patients. This project is a continuation of a research initiative previously funded by The Brett Boyer Foundation in 2023. That project was successful in translating existing wideband sequences into pediatric care. These sequences were piloted in 21 healthy children with an ICD taped on the body to mimic a CIED implantation. The next step is to test wideband MRI in children with CIED systems who have already been deemed safe for MRI.  

Specific Aim:  Apply age-specific, free-breathing, wideband cardiovascular MRI pulse sequences to produce diagnostically acceptable image quality in children with implanted CIEDs.