CHC Outcomes and Highlights Brochure 2023

Congenital Heart Center 2023

OUTCOMES AND HIGHLIGHTS

Extraordinary Heart Care for Patients with Pediatric and Congenital Heart Disease (CHD) FRO M FE TA L L IFE TH ROUG H A DU LTHOO D

WHY CHOOSE US EXTENSIVE EXPERIENCE • A s 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 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 surgery program • Longitudinal Follow-Up Program, Interstage Home Monitoring, Single Ventricle Multidisciplinary FollowUp Clinic and Neurodevelopmental Program

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COORDINATED CARE, CLOSE TO HOME • 1 4 clinic locations in Michigan and northern Ohio, and collaborating partners across the region bring our expert clinicians close to you • R emote echocardiography and telemedicine capabilities • C omprehensive transport services INNOVATIVE TREATMENTS AND CUTTING-EDGE RESEARCH • L eaders in research and innovation, providing patients with access to the latest treatments, devices and clinical trials • P ediatric Heart Network core site FAMILY SUPPORT AND RESOURCES • P atient 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

2023 HIGHLIGHTS AT A GLANCE FIRST FEMALE PRESIDENT TO LEAD SOCIETY OF THORACIC SURGEONS Mott congenital heart surgeon Jennifer Romano, M.D., M.S., was named President of the Society of Thoracic Surgeons during the organization’s 59th Annual Meeting in January 2024. Romano is the first female and one of a few congenital heart surgeons to be elected to serve in this prestigious position.

AHA OUTSTANDING RESEARCH AWARD A 20-center study defined factors that may contribute to worse transplant outcomes in patients who experience complex disease after a Fontan surgery. The study, led

by Mott pediatric cardiologist Kurt Schumacher, M.D., and pediatric psychologist Melissa Cousino, Ph.D., was reported at the 2023 American Heart Association (AHA) Scientific Sessions in Philadelphia where it received an outstanding research award.

LEADING EXPERTS RELEASE NEW GUIDELINES TO IMPROVE CONGENITAL HEART SURGERY CARE FOR CHILDREN New pediatric heart surgery recommendations, published for the first time in over two decades, addressed areas such as resources, personnel, surgical volume and quality that contribute to the best quality and safety at centers performing heart surgery in children. The effort, co-chaired by Mott pediatric cardiologist Sara Pasquali, M.D., M.H.S., and co-authored by Mott congenital heart surgeon Jennifer Romano, M.D., M.S., was co-published in three major journals – The Annals of Thoracic Surgery, the World Journal for Pediatric and Congenital Heart Surgery and the Journal of Thoracic and Cardiovascular Surgery.

ADOLESCENTS AND YOUNG ADULTS WITH ADVANCED HEART DISEASE SHOW DESIRE TO TAKE ACTIVE ROLE IN MEDICAL CARE DECISIONS Research on patient communication and medical decision-making is a top priority in the field of palliative care in pediatric cardiology. A study led by Mott

pediatric psychologist and M-COPE director Melissa Cousino, Ph.D., found discord between medical decision-making preferences of youth with heart failure and their parents. The findings, published in JAMA Network Open, underscored the importance of understanding an individual’s preferences and personalizing communication methods with each young patient regardless of their diagnosis, disease severity or symptoms.

NATIONAL RECOGNITION FOR ELECTROPHYSIOLOGY NURSE PRACTITIONER Brynn Dechert-Crooks, CPNP, received the 2023 Distinguished Allied Professional award from the Heart Rhythm Society (HRS) at the Heart Rhythm 2023 meeting in New Orleans. This honor recognizes allied professionals who have demonstrated strategic leadership in the HRS allied community throughout their career and, in doing so, have furthered the field of electrophysiology and patient care.

HELPING DEVELOP CARDIOVASCULAR EDUCATION PROGRAMS AROUND THE WORLD Mott pediatric cardiologist David Bradley, M.D., spent 10 months in Rwanda on a Fulbright U.S. Scholar grant. Bradley was a lecturer and clinical teacher at the University of Rwanda in Kigali as part of a project to develop cardiovascular education programs in the country, collaborating to develop training curricula for specialist physicians and allied professionals. His work in Rwanda focused on the implementation of these formal training pathways and increasing knowledge in his own specialty areas of pediatric cardiology and electrophysiology.

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ACROSS MICHIGAN AND AROUND THE GLOBE We have cared for patients from:

EVERY COUNTY

IN MICHIGAN

50 60 ALL

COUNTRIES

STATES

2013–2023 SURGICAL REFERRALS

BY THE NUMBERS 2023 DATA

50 5 12

PEDIATRIC CARDIOLOGISTS

CONGENITAL CARDIAC SURGEONS

4

PEDIATRIC CARDIAC ANESTHESIOLOGISTS

30

5

ADVANCED PRACTICE PROVIDERS

PSYCHOLOGISTS/ NEUROPSYCHOLOGISTS

14 5

CLINIC LOCATIONS

SOCIAL WORKERS

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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 4,900 visits in 2023 Cardiac Anesthesia Service 12 pediatric cardiac anesthesiologists providing comprehensive anesthesia services Cardiac Catheterization Staffed by three pediatric interventional cardiologists with advanced training, performing more than 880 cases in 2023 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 four pediatric cardiologists with advanced magnetic resonance imaging (MRI) training, nearly 700 studies performed in 2023

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Cardiac Nursing and Advanced Practice Providers (APPs) Specialized inpatient and outpatient teams with prestigious nursing Magnet designation and a team of 30 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 14 Mott hospital-based pediatric cardiologists, nine community-based pediatric cardiologists and 13 sonographers with expertise in pediatric and congenital 2D, 3D, transesophageal, and fetal imaging, performing more than 18,000 studies in 2023 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 700 outpatient visits in 2023 and 19 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 900 fetal echocardiograms performed at our main hospital and more than 900 fetal echos across eight outreach locations in 2023, 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 Transition Program Multidisciplinary team (nurse practitioners, psychologists, social workers, a cardiologist and an exercise specialist) addressing medical, educational and psychological needs specific to each pediatric patient transitioning to adult care

Pulmonary Vein Anomalies Program Multidisciplinary team (surgeons, interventional cardiologists and a nurse practitioner) developed for the diagnosis and management of pulmonary vein stenosis in patients with repaired pulmonary vein anomalies associated with complex CHD and those with prematurity and primary pulmonary vein stenosis

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VOLUMES AND OUTCOMES

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

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

2023 TOTAL CARDIAC SURGERY VOLUME

FY 2020–2023 STAT 5 CASES

762

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

119

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

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

OPERATIVE MORTALITY BY STAT CATEGORY

POST-OPERATIVE LOS BY STAT CATEGORY

15

34 DAYS U-M LOS

60 50 DAYS

9 6

40

64 DAYS STS LOS

30 20

3 0

STAT CATEGORY 5

70

12 PERCENT

OUTCOMES

VOLUMES

CARDIAC SURGERY

10 Overall

STAT 4

STAT 5

0

1

2

3

4

5

STAT CATEGORY n U-M FY 2020–2023 ADJUSTED OPERATIVE MORTALITY (AND 95% CONFIDENCE INTERVAL)

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n STS: FY 2020–2023 BENCHMARK

n U-M FY 2020–2023 LOS

n STS FY2020–2023 BENCHMARK (MOST RECENT DATA AVAILABLE)

QUALITY IMPROVEMENT 3

Our unique multidisciplinary quality team spans the Congenital Heart Center and leads multiple ongoing initiatives aiming to optimize quality of care and patient outcomes.

2 high-risk patients and implement strategies to mitigate infection risk. Regular CLABSI-focused rounds involving both leadership and the bedside teams aid in fostering communication, and identifying and addressing both patientspecific and systems-wide issues. As a result of these efforts, we have seen a decline in CLABSI rates across both our cardiac critical care and step-down units.

RATE

CLABSI Rounds In 2023, one of our quality and safety efforts focused on reducing Central Line-Associated Blood Stream Infections (CLABSI). The project highlights the culture of collaboration and teamwork across the Congenital Heart Center and involves team members across our hospital units — including nursing, cardiac critical care, cardiology and our quality improvement team — working together to proactively identify

2.6

1.7

1 0

1.1 0

FY23

FY24*

PCTU 11w *as of December

CLINIC VISITS

15,425 ECHOCARDIOGRAMS

19,012

CATHETERIZATIONS

885

ELECTROPHYSIOLOGY PROCEDURES

246

Major complication rate 0%

CARDIAC ICU 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

TRANSPLANTS

18 days

94.6% 1-year survival over the most recent 30-month evaluation period

12 days

19

Major complication rate 0.79%

6 days

2023 DATA UNLESS OTHERWISE SPECIFIED

0 days

n U-M

n OTHER SITES

SOURCE: Pediatric Cardiac Critical Care Consortium (PC4) TIME FRAME: 2022–2023 data vs. other high-volume sites

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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 and translational investigation and accelerates novel and collaborative science.

Cardiac Networks United (CNU) Data Core We lead Data Core activities for CNU, which integrates nine large networks spanning more than twothirds 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.

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. Mott has continuously served as a PHN site since 2011, and we were recently selected to continue participation for another seven years, through 2030. 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 2023. 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

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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 and continues to be a top enrolling center in the trial.

will be healthy or have a more difficult course after a Fontan procedure. Understanding these differences may allow the development of novel treatment strategies to improve the health and enhance the quality of life in patients who have had a Fontan procedure.

Longitudinal Follow-Up for Patient’s Enrolled in the Original Single Ventricle Reconstruction Trial (SVR III) This PHN study is co-led at U-M and is the largest prospective study to date of children with hypoplastic left heart syndrome (HLHS). Because of the study and the significant commitment of all the study participants, families have learned and continue to learn a great deal about the optimal surgical and medical approaches to treat individuals with HLHS.

Additional 2023 Research Highlights:

Fontan-Associated Liver Disease (FALD) Trial 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.

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:

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

Genetic Determinants of Ventricular Function and Exercise Performance After the Fontan Procedure In collaboration with the PHN, U-M investigators will lead a study examining the genetic determinants of exercise performance and ventricular function in patients who have had a Fontan procedure. The study promises to provide important insights into the signaling pathways that determine whether a patient

T-NOX Trial Update U-M investigators completed enrollment in the T-NOX trial in 2023, which compared strategies for oxygen delivery (normal versus high levels) in infants undergoing congenital heart surgery. In 2024, the T-NOX trial team looks forward to presenting the important results at an international meeting and in a manuscript.

• F ontan Circulatory Failure Study U-M is the lead site for the largest study to date examining the role of Fontan-associated complications, frailty and resilience on heart failure outcomes. The retrospective portion of the study enrolled more than 400 patients with Fontan physiology listed for heart transplant and found Fontan-specific factors that were associated with death before and after transplant. The study was presented at the American Heart Association 2023 Scientific Sessions and received the award for most outstanding research in pediatric cardiology. The prospective arm of the study is ongoing and has enrolled nearly 100 patients with Fontan physiology and heart failure to assess how frailty and resilience affects their outcomes.

• Fontan Wellness Program 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). Initial pilot results have demonstrated clinically meaningful improvements in patient emotional resilience, depressive symptoms, grip strength and oxygen consumption. Moreover, patients rate the program very favorably and would recommend to peers.

2023 CONGENITAL HEART CENTER RESEARCH ACTIVITY

>150

ONGOING PROJECTS

>50

ACTIVE GRANTS

>145 PUBLICATIONS

michmed.org/2023CHCpubs

• 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-reported 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. The team is expected to complete enrollment in spring or summer 2024.

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, and published in 2023, have paved the way to understanding the current state in pediatric cardiology and congenital heart surgery, setting the stage for future investigation.

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Congenital Heart Center 1540 East Hospital Drive Ann Arbor, MI 48109-4204

EXPERT CARE, CLOSE TO HOME AND ACROSS THE GLOBE Patients and Families 1-734-764-5176 Referring Physicians 1-800-962-3555

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

• Comprehensive transport services when transfer is needed

■ Marquette

PATIENT AND FAMILY SUPPORT SERVICES

The Regents of the University of Michigan Jordan B. Acker, Michael J. Behm, Mark J. Bernstein, Paul W. Brown, Sarah Hubbard, Denise Ilitch, Ron Weiser, Katherine E. White, Santa J. Ono (ex officio) University of Michigan Health Executive Officers Marschall S. Runge, M.D., Ph.D., Executive Vice President for Medical Affairs, Dean; Steven L. Kunkel, Ph.D., Executive Vice Dean for Research; David C. Miller, M.D., M.P.H. , Executive Vice Dean for Clinical Affairs; Debra F. Weinstein, M.D., Executive Vice Dean for Academic Affairs A Non-discriminatory, Affirmative Action Employer ©2023 Regents of the University of Michigan

• 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

www.mottchildren.org/ped-heart @MottChildren

COORDINATED SERVICES FOR FAMILIES TRAVELING FOR CARE

■ Petoskey ■

Traverse City

■ Alpena

• 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

Flint ■ Grand Rapids ■ Lansing ■ ■ Pontiac Brighton ■ Ann Arbor ■ ■ Northville Kalamazoo ■ Ypsilanti Toledo, OH ■

• Child life • Music, art, technology and pet therapy services • Social work • Psychology