Congenital Heart Center Outcome and Highlights 2022

Congenital Heart Center

OUTCOMES AND HIGHLIGHTS 2022

Extraordinary Heart Care for Patients with Pediatric and Congenital Heart Disease (CHD)

FROM FETAL LIFE THROUGH ADULTHOOD

WHY CHOOSE US EXTENSIVE EXPERIENCE

• As an international referral center, the Congenital Heart Center at University of Michigan Health

C.S. Mott Children’s Hospital is one of the largest and most experienced programs worldwide

EXPERT TEAM, DEDICATED SERVICES

• Expert specialists across every facet of heart care, spanning the most common disorders to groundbreaking therapies for complex cases

• Dedicated inpatient and outpatient units with specialized cardiac teams providing 24/7 care

RELENTLESS FOCUS ON OPTIMIZING QUALITY AND OUTCOMES

• Excellent outcomes for our highly complex patient population

• We lead multiple ongoing projects geared toward improving quality and safety, and sharing best practices to enhance care for children with heart disease around the country

TOP 10 PEDIATRIC CARDIOLOGY & HEART SURGERY PROGRAM

COMPREHENSIVE LIFE-LONG CARE

• Seamless care from fetal life through adulthood, focused on enhancing long-term outcomes and quality of life

• On-site Von Voigtlander Women’s Hospital birthing center and collaboration with Frankel Cardiovascular Center’s top-ranked adult cardiac program

• Longitudinal Follow-Up Program, Interstage Home Monitoring, Single Ventricle Multidisciplinary FollowUp Clinic and Neurodevelopmental Program

COORDINATED CARE, CLOSE TO HOME

• 14 clinic locations in Michigan and northern Ohio, and collaborating partners across the region bring our expert clinicians close to you

• Remote echocardiography and telemedicine capabilities

• Comprehensive transport services

INNOVATIVE TREATMENTS AND CUTTING-EDGE RESEARCH

• Leaders in research and innovation, providing patients with access to the latest treatments, devices and clinical trials

• Pediatric Heart Network core site

FAMILY SUPPORT AND RESOURCES

• Patient and Family Centered Care program, onsite Ronald McDonald House, support for travel and lodging coordination, hospital school services, spiritual care, psychological support and many other resources

2022 HIGHLIGHTS AT A GLANCE

NOVEL HOME EXERCISE AND RESILIENCY TRAINING (HEART) CLUB

A new, home-based rehabilitation program is part of a research effort funded by gifts from the Cortney Gives BAK Foundation, Reuben Phoenix Schostak Fund and the Pediatric Heart Network (PHN) that aims to equitably improve frailty and exercise capacity among our patients with Fontan circulation. The program also drives expansion of an outpatient informatics platform for clinical exercise programs, research collaboration and patient engagement.

ONE-OF-A-KIND MENTAL HEALTH SERVICES DEDICATED TO CHD

Among many 2022 accomplishments, the unique U-M Congenital Heart Center Psychosocial and Educational Program (M-COPE) launched a virtual group and mobile app-based resiliency skills training program for young people with heart disease and secured support for a novel adult congenital heart disease (ACHD) focused psychology fellowship training program as well as funding for new research studies. One NIH-funded study is aimed at meeting the communication and decision-making needs of young people with advanced heart disease and another PHN-funded study is examining the impact of social determinates of health on access to mental health care and outcomes in patients with single ventricle heart disease.

EXCELLENCE IN SINGLE VENTRICLE CARE

U-M revolutionized the surgical treatment of hypoplastic left heart syndrome (HLHS) and continues to care for one of the largest groups of patients with complex single ventricle anatomy and to lead in the innovation and growth of single ventricle care. Recent accomplishments include:

• our new advanced training fellowship for single ventricle care — a first of its kind.

• coordinated multidisciplinary care for children and adolescents with single ventricle heart disease.

• numerous emerging studies looking to understand hybrid care and outcomes for individuals with high-risk comorbidities and complex single ventricle anatomy.

FIRST TRIAL COMPARING CATHETER-BASED AND SURGICAL INTERVENTIONS

U-M is leading the first randomized trial to compare outcomes in catheter-based stents and surgical shunts for children with insufficient blood flow between their heart and lungs. U-M investigators are collaborating with a team from the PHN and two national registries to lead the NIH-funded COMPASS trial.

INNOVATIVE PROGRAM TO TRAIN THE NEXT GENERATION

U-M led a national collaboration across several congenital heart centers to launch a new faculty exchange program providing junior career faculty with career development, mentoring and networking opportunities at programs around the country. U-M recently hosted a visiting faculty member interested in learning more about single ventricle care.

THE NUMBERS

14 CLINIC LOCATIONS

5 CONGENITAL CARDIAC SURGEONS

11 PEDIATRIC CARDIAC ANESTHESIOLOGISTS

26 ADVANCED PRACTICE PROVIDERS

4 PSYCHOLOGISTS/ NEUROPSYCHOLOGISTS

5 SOCIAL WORKERS

ACROSS

MICHIGAN AND AROUND THE GLOBE

ALL 50 STATES 60 COUNTRIES

PROGRAMS AND CLINICS AT A GLANCE

The Congenital Heart Center at University of Michigan Health is located in the state-of-the-art C.S. Mott Children’s Hospital, a 346-bed, free-standing facility.

Adult Congenital Heart Program

ACHA-accredited program staffed by ACHD boardcertified cardiologists, more than 4,600 visits in 2022

Cardiac Anesthesia Service

11 pediatric cardiac anesthesiologists providing comprehensive anesthesia services

Cardiac Catheterization

Staffed by three pediatric interventional cardiologists with advanced training, performing more than 800 cases in 2022 spanning the full spectrum of congenital heart disease

Cardiac Genetics Clinic

Multidisciplinary team (cardiology, genetics and genetic counseling services) providing coordinated screening, diagnosis, management and counseling for patients with heritable cardiac conditions

Cardiac MRI

Staffed by three pediatric cardiologists with advanced magnetic resonance imaging (MRI) training, nearly 650 studies performed in 2022

Cardiac Nursing and Advanced Practice Providers (APPs)

Specialized inpatient and outpatient teams with prestigious nursing Magnet designation and a team of 26 APPs (nurse practitioners and physician assistants) in various subspecialities caring for children and adults with congenital heart disease

Cardio-Oncology Long Term Follow-up Clinic

Cardiology and oncology provide specialized care for children with a high risk of developing cardiovascular health complications as a result of cancer treatment

Cardiology Clinics

General and specialty clinics for patients with all forms of congenital and pediatric heart disease at 14 locations across Michigan and northern Ohio

Complex Biventricular Repair Program

Comprehensive surgical planning and innovative procedures to achieve two-ventricle circulation in children with complex anatomy

Congenital Cardiac Surgery

High-volume international referral center, five congenital cardiac surgeons, two dedicated ORs

Echocardiography

Staffed by 13 Mott hospital-based pediatric cardiologists, eight community-based pediatric cardiologists and 14 sonographers with expertise in pediatric and congenital 2D, 3D, transesophageal, and fetal imaging, performing more than 18,000 studies in 2022 across Mott and outreach locations

Electrophysiology & Heart Rhythm Program

Providing a full spectrum of pediatric arrhythmia care including consultation, catheter ablation, cardiac device care, and treatment of genetic arrhythmia syndromes

Exercise Physiology & Vascular Lab

Performs comprehensive diagnostic exercise testing and vascular measurements, and provides therapeutic exercise programs including exercise prescription and home exercise training for adolescents and adults

Heart Failure & Transplant

Staffed by four pediatric heart failure/transplant specialists with advanced training, more than 600 outpatient visits in 2022 and 12 heart transplants, expertise in advanced heart failure management, cardiomyopathy and pediatric ventricular assist devices (VADs)

Hybrid Intervention

Experienced team of surgeons and interventional cardiologists performing hybrid procedures for high-risk single ventricle patients, marginal biventricular repair candidates, complex pulmonary artery interventions, muscular ventricular septal defects and bridge to transplantation

Interstage Home Monitoring

Home monitoring services, care coordination, and education for single ventricle patients and other types of staged surgery

Muscular Dystrophy Clinic

Multidisciplinary clinic (cardiology, neurology, and physical medicine and rehabilitation) serving patients with a wide range of neuromuscular disorders

Neurodevelopmental Program

Multidisciplinary team (cardiology, psychology, neurology, nursing and social work) providing unique inpatient consultation, outpatient evaluation of neurodevelopmental and behavioral concerns, and referral for appropriate treatments

Pediatric Acute Cardiac Care Unit

32-bed unit, multidisciplinary patient-centered pediatric heart care

Pediatric Cardiothoracic Intensive Care Unit

21-bed dedicated cardiac ICU with 24/7 in-house attending coverage

Prenatal Program & Fetal Intervention

With more than 900 fetal echocardiograms performed at our main hospital and 700 fetal echos across eight outreach locations in 2022, the Prenatal Heart Program offers a complete range of fetal heart services, extensive counseling, and the full spectrum of fetal

cardiac interventions. Care is integrated seamlessly with Von Voigtlander Women’s Hospital, located in the same building as Mott.

Pulmonary Hypertension

Inpatient and outpatient services providing comprehensive evaluation, treatment and follow-up for pulmonary hypertension

Preventive Cardiology Clinic

Specialized care for children with abnormal lipid levels or hypertension to reduce cardiovascular risk

Psychosocial & Educational Program (M-COPE)

Unique initiative leading novel clinical, research, and educational efforts to understand and address stressors impacting patients with heart disease and their families across their lifespan, including adjustment to illness, mental health concerns and educational challenges

Single Ventricle Follow-Up Clinic

Multidisciplinary team (cardiology, gastroenterology, nephrology, neurology, psychology and more) providing comprehensive, coordinated longitudinal care and education for single ventricle patients in coordination with their primary cardiologist

“Our outstanding team culture is the direct result of personal relationships that run much deeper than the traditional professional relationships at many academic centers. We are like a big family, and we care deeply about one another. I believe that these connections result in a multidisciplinary, collaborative, and harmony-driven approach to clinical decision-making that produces best possible outcomes for our patients and their families. This is the Michigan difference!”

OUR TEAM

The care our center provides isn’t rooted in a single person but rather the expertise and support all disciplines bring together. From techs and nurses to our doctors and surgeons, we come together to deliver the best pediatric heart care.

NATIONAL RECOGNITION

Team members from across all disciplines are making a big impact on congenital heart care across the country and around the world. Some highlights include:

• David Bradley, M.D., received a Fulbright U.S. Scholar grant to promote cardiovascular education and services in Rwanda at the University of Rwanda.

• Louise Callow, R.N., M.S.N., CPNP, received the Patricia Hickey Award for Excellence in Pediatric Cardiovascular Nursing from the Pediatric Cardiac Intensive Care Society.

“I’m often asked, ‘What is the key to the Congenital Heart Center’s excellent culture and outcomes?’ And while we have world-class providers across the program, it is how we collaborate across multiple disciplines which makes us unique. We may be extraordinary surgeons, cardiologists, anesthesiologists, nurses, respiratory therapists, psychologists, pharmacologists, or any of the other key members of our program by trade, but it’s the way we work seamlessly together as a single unit that is crucial to our success. If someone asks me what I do at the hospital, I don’t say, ‘I am a congenital heart surgeon,’ I say, ‘I work at the Heart Center.’ We all feel that way. We work as a team at the Heart Center to provide the highest level of care for our patients.”

• Brynn Dechert-Crooks, R.N., M.S.N., CPNP, CCDS, FHRS, was elected to the Heart Rhythm Society Board of Trustees.

• Gregory Ensing, M.D., was awarded the 2022 Richard Popp Excellence in Training Award from the American Society of Echocardiography. Ensing has trained a generation of pediatric cardiologists in echocardiography locally and around the globe through his teaching and mentoring activities. He is the first pediatric cardiologist to receive this prestigious award.

• Jesse Hansen, M.D., and Amanda McCormick, M.D., received 2022 DEI Pediatric Heart Network Scholar Awards.

• Jimmy Lu, M.D., was appointed to the American Society of Echocardiography Pediatric and Congenital Heart Disease Council.

• Sara Pasquali, M.D., M.H.S., was selected as a Fellow in the Hedwig van Ameringen Executive Leadership in Academic Medicine (ELAM) Program.

• Jennifer Romano, M.D., M.S., now holds the First Vice President position in the Society of Thoracic Surgeons. Through a staged ascension, Romano will become the first female President in 2024.

• Alicia Valentini, R.N., M.S., CPNP, was elected as the Vice President of the Society for Pediatric Cardiovascular Nurses.

VOLUMES AND OUTCOMES

Our congenital cardiac surgery program is considered one of the highest-volume programs in the nation.*

2022 TOTAL CARDIAC SURGERY VOLUME

710

*250 cases/year is the benchmark used by the Society of Thoracic Surgeons (STS) to define high-volume centers

We are among the most experienced programs in the nation with high complexity (STAT 5) cases.

FY 2018–2021 STAT 5 CASES

128

Excellent outcomes for our highly complex patient population compared to national benchmarks.

OPERATIVE MORTALITY BY STAT CATEGORY

Our post-operative length of stay (LOS) is substantially shorter compared to national benchmarks.

POST-OPERATIVE LOS BY STAT CATEGORY

25 DAYS U-M LOS 54 DAYS STS LOS

n U-M FY 2018–2021

ADJUSTED OPERATIVE MORTALITY (AND 95% CONFIDENCE INTERVAL)

n STS: FY 2018–2021

BENCHMARK (MOST RECENT DATA AVAILABLE)

BENCHMARK (MOST RECENT DATA AVAILABLE)

QUALITY IMPROVEMENT

Our unique multidisciplinary quality team spans the Congenital Heart Center and leads multiple ongoing initiatives aiming to optimize quality of care and patient outcomes. Active project highlights include focus on:

• Cardiac arrest prevention

• Length of stay optimization and improving time of discharge

• Multidisciplinary patient and family meetings

• Intra-operative blood utilization

• Feeding: cue-based and pre-operative

• Hospital-acquired infection prevention

• Vascular complications

• Implicit bias training

• Fetal delivery planning and improved maternal bonding time

This year, Michigan Medicine launched a Healthcare Equity Consult Service (HECS) across the health system to support patients, families, and caregivers who believe that bias, inequities, or perceived discrimination of any kind may have affected their care. Michigan Medicine strives to continually improve our patient care experience and build trust and mutual respect. This service is available to all inpatients across pediatric and adult hospitals.

CLINIC VISITS

15,874 ECHOCARDIOGRAMS

18,068 CATHETERIZATIONS

807 Major complication rate 0.7%

ELECTROPHYSIOLOGY CASES

248 Major complication rate 0% TRANSPLANTS

12

97.6% 1-year survival over the most recent 30-month evaluation period

2022 DATA UNLESS OTHERWISE SPECIFIED

Our expert care helps patients recover quickly after congenital heart surgery, with short stays in the cardiac intensive care unit (CICU).

Post-Operative CICU Length of Stay

SOURCE: Pediatric Cardiac Critical Care Consortium (PC4)

TIME FRAME: 2021–2022 data vs. other high-volume sites

RESEARCH AND INNOVATION

We support groundbreaking research and innovation geared toward driving improvements in care and outcomes and developing new therapies for the next generation.

Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) Program

M-CHORD is our unique research core within the Congenital Heart Center supported by dedicated faculty and staff. Our comprehensive expertise spans the spectrum of clinical investigation and accelerates novel and collaborative science.

Pediatric Heart Network (PHN) Core Site

We are one of nine centers across the country selected to participate in the PHN, funded by the National Institutes of Health. Through this network our patients have access to clinical trials of cutting-edge therapies and interventions. A list of active studies can be found at: www.pediatricheartnetwork.org/studies.

U-M Investigators collaborated with the PHN to lead a variety of efforts in 2022. Examples include:

COMPASS Trial

Comparison of Methods of Pulmonary Blood Flow

Augmentation in Neonates: Shunt Versus Stent (COMPASS) — the first randomized trial to compare a catheter-based intervention vs. surgery in the CHD population. U-M investigators are collaborating with the PHN and two national CNU registries to lead the COMPASS trial, which is studying infants with ductaldependent pulmonary blood flow. The trial started in 2022 with U-M as the first enrollment site.

Fontan Associated Liver Disease (FALD) Trial

Additional 2022 Research Highlights: T-NOX Trial Update

U-M investigators launched the T-NOX trial in 2021, which compares strategies for oxygen delivery (normoxia vs. hyperoxia) in infants undergoing congenital heart surgery. In 2022, the T-NOX trial team reached the 50% enrollment mark.

Fontan Long-Term Outcomes

U-M cares for one of the largest populations of Fontan patients worldwide, and our investigators lead multiple projects focused on improving long-term Fontan outcomes. Studies include:

• Fontan Circulatory Failure Study

We are the lead site for the largest study to date examining the role of Fontan-associated complications, frailty, and resilience on heart failure outcomes. This study now includes 20 active sites across the country.

• Fontan Wellness Program

Cardiac Networks United Data Core

We lead Data Core activities for Cardiac Networks United (CNU), which integrates nine large networks spanning more than two-thirds of the nation’s congenital heart programs. The Data Core houses one of the largest collections of CHD data worldwide and accelerates collaborative research and quality improvement activities.

Our investigators lead this large multi-center trial which is a supplemental study to the PHN Fontan Udenafil Exercise Longitudinal (FUEL) Open-Label Extension (OLE) trial. The FALD trial recently completed enrollment and will shed new light on Fontanassociated liver disease.

Biorepository

U-M leads biorepository efforts for the PHN, supporting investigations in the precision medicine realm to understand unique traits influencing CHD outcomes

Our unique U-M clinical research program is aimed at improving overall wellness and long-term outcomes in adolescents and adults with Fontan-palliated heart disease. This program combines virtual resiliency skills training (WE BEAT) with virtual exercise training (HEART Club). Early results from our first three cohorts are very encouraging. To date, the WE BEAT resiliency skills training program has been rated at nearly 9 out of 10 in a satisfaction survey by participants and the HEART Club is changing the ways in which our patients safely exercise at home.

• Fontan Mental Health Study

We are the lead site for this PHN-funded study looking at the associations between social determinants of health and mental health in patients with Fontan circulation. This study uses self-report and parent-reported measures to assess psychological functioning and adverse social determinants of health in 130 patients. To increase diversity of the study population, two other leading children’s hospitals were included as additional enrolling sites.

Stem Cell Trial

U-M is participating in a study to test whether patientspecific stem cells injected into the hearts of children with hypoplastic left heart syndrome can improve heart strength and other outcomes in this population.

Diversity of the CHD Workforce

Through multiple projects, our team is investigating mechanisms to improve opportunities and advancement for women and minorities in the field. Two national analyses conducted in 2021 have paved the way to understanding the current state in pediatric cardiology and congenital heart surgery, setting the stage for future investigation.

EXPERT CARE, CLOSE TO HOME AND ACROSS THE GLOBE

Nearly all Michigan families are within 90 miles of expert pediatric and congenital heart care from a C.S. Mott Children’s Hospital provider.

COORDINATED SERVICES FOR FAMILIES TRAVELING FOR CARE

• Experience providing seamless care for children around the country and across the globe with ~20% of our congenital heart surgery patients traveling to Mott for expert care from out of state

• Remote echocardiography and telemedicine capabilities

• Comprehensive transport services when transfer is needed

PATIENT AND FAMILY SUPPORT SERVICES

• Patient and Family Centered Care and peer-mentoring program

• On-site Ronald McDonald House

• Travel and lodging coordination and support

• Hospital school and educational services

• Spiritual care

• Child life

• Music, art, technology and pet therapy services