Congenital Heart Center 2020
OUTCOMES AND HIGHLIGHTS
EXTRAORDINARY HEART CARE FOR PATIENTS WITH PEDIATRIC AND CONGENITAL HEART DISEASE FROM FETAL LIFE THROUGH ADULTHOOD Why Choose Us
EXTENSIVE EXPERIENCE • As an international referral center, the Congenital Heart Center at Michigan Medicine 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 further optimizing outcomes, and sharing best practices to enhance quality of 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 program • Longitudinal Follow-Up Program, Interstage Home Monitoring, Single Ventricle Multidisciplinary Follow-Up Clinic, and Neurodevelopmental Program
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COORDINATED CARE, CLOSE TO HOME • 12 clinic locations in Michigan and northern Ohio, and collaborating partners across the country 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, on-site Ronald McDonald House, support for travel and lodging coordination, hospital school services, spiritual care, psychological support and many other resources
2020 HIGHLIGHTS AT A GLANCE COMMUNITY SUPPORT DURING COVID-19 Our team led efforts to minimize the impact of the pandemic on the CHD community, including an international study to better understand the impact of COVID-19 on CHD care and mental health, and a number of educational webinars to provide guidance on COVID-related topics. UNIQUE PSYCHOSOCIAL PROGRAM LAUNCHED M-COPE, the U-M Congenital Heart Center Psychosocial and Educational Program, leads clinical and research initiatives to understand and address stressors impacting CHD families such as adjustment to illness, mental health issues, and educational challenges. Nearly $1 million in NIH funding has been secured to support our growing psychosocial research program.
ACROSS MICHIGAN AND AROUND THE GLOBE WE HAVE CARED FOR PATIENTS FROM:
Every county in Michigan
n
All 50 states
n
60 countries
NATIONAL NEURODEVELOPMENTAL AWARD Caren Goldberg, M.D., received the prestigious NewburgerBellinger Cardiac Neurodevelopmental Award, recognizing her significant contributions to advancing neurodevelopmental care at our center and around the country. ADVANCES IN COMPLEX SURGICAL REPAIR New research this year shed light on outcomes for children with congenitally corrected transposition of the great arteries (CCTGA). Our innovative Complex Biventricular Repair Program is one of the most experienced worldwide with anatomic repair for CCTGA. PEDIATRIC HEART FAILURE & TRANSPLANT PROGRAM GROWTH We performed 22 heart transplants in 2020 with 98% survival over the past 3 years, making our program one of the busiest in the country caring for these complex patients and achieving excellent outcomes. HISTORIC LOW IN SURGICAL MORTALITY Our comprehensive Quality & Safety Program launched numerous efforts over the past year to help achieve historic lows in mortality, and enhanced recovery after congenital heart surgery. ACCELERATING CHD DISCOVERY AND IMPROVEMENTS IN CARE 2020 brought continued growth in collaborative discovery and improvement efforts through Cardiac Networks United, including one project which led to a 33% reduction in cardiac arrest rates across 15 participating PC4 sites.
2010–2020 SURGICAL REFERRALS
BY THE NUMBERS
45
2020 DATA
PEDIATRIC CARDIOLOGISTS
6
13
22
12
PEDIATRIC CARDIAC ANESTHESIOLOGISTS
ADVANCED PRACTICE PROVIDERS
CONGENITAL CARDIAC SURGEONS
CLINIC LOCATIONS 3
4
PROGRAMS AND CLINICS AT A GLANCE The Michigan Medicine Congenital Heart Center is located in the state-of-the-art C.S. Mott Children’s Hospital, a 342-bed, free-standing facility. Adult Congenital Heart Program ACHA-accredited program staffed by ACHD boardcertified cardiologists, more than 4,000 visits annually
Congenital Cardiac Surgery High-volume international referral center, six congenital cardiac surgeons, two dedicated ORs
Cardiac Anesthesia Service 13 pediatric cardiac anesthesiologists providing comprehensive anesthesia services
Echocardiography Staffed by 13 pediatric cardiologists and 11 sonographers with advanced training in 2D, 3D, transesophageal, and fetal imaging, performing more than 15,000 studies annually across Mott and outreach locations
Cardiac Catheterization Staffed by three pediatric interventional cardiologists with advanced training, performing more than 750 cases annually 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 MRI training, more than 550 studies performed annually Cardiac Nursing Specialized inpatient and outpatient teams, nursing Magnet designation
Electrophysiology & Heart Rhythm Program Staffed by four pediatric electrophysiologists with advanced training, providing the full spectrum of pediatric EP services Exercise Physiology & Vascular Lab Performs the full complement of exercise protocols, vascular measurements, and testing Heart Failure & Transplant Staffed by four pediatric heart failure/transplant specialists with advanced training, more than 550 outpatient visits and more than 20 heart transplants annually, expertise in advanced heart failure management, cardiomyopathy, and pediatric ventricular assist devices (VADs)
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
Hybrid Intervention Experienced team of surgeons and interventional cardiologists performing hybrid stage I for high-risk single ventricle patients and hybrid pulmonary artery interventions
Cardiology Clinics General and specialty clinics for patients with all forms of congenital and pediatric heart disease at 12 locations across Michigan and northern Ohio
Interstage Home Monitoring Home monitoring services, care coordination, and education for single ventricle patients and other types of staged surgery
Complex Biventricular Repair Program Comprehensive surgical planning and innovative procedures to achieve two-ventricle circulation in children with complex anatomy
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 telemetry unit, multidisciplinary patientcentered pediatric heart care Pediatric Cardiothoracic Intensive Care Unit 20-bed dedicated cardiac ICU with 24/7 in-house attending coverage Prenatal Program & Fetal Intervention Nearly 900 fetal ultrasound studies performed annually, on-site birthing center, and experienced multidisciplinary fetal intervention team with one of the highest-volume fetal intervention programs worldwide 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 Unique initiative leading novel clinical and research efforts to understand and address stressors impacting CHD families such as adjustment to illness, mental health issues, 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
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VOLUMES AND OUTCOMES
Our congenital cardiac surgery program is considered one of the highest-volume programs in the nation by the Society of Thoracic Surgeons (STS). 2020 TOTAL CARDIAC SURGERY VOLUME 800
676
400 200
250
0 n U-M
We have excellent outcomes compared to national benchmarks and continually strive to further optimize our results. 2020 OPERATIVE MORTALITY BY STAT CATEGORY 15 12
PERCENT
600
OUTCOMES
2.1%
2020 U-M OPERATIVE MORTALITY — a historic low
9 6 3 0
1
2
0
3
4
5
STAT CATEGORY
n STS
n U-M: 2020 UNADJUSTED OPERATIVE MORTALITY n STS: 2015–2018 BENCHMARK (MOST RECENT DATA AVAILABLE)
Our annual surgical volume significantly exceeds the 250 cases/year benchmark that the STS uses to identify high-volume programs.
Our post-operative length of stay (LOS) is substantially lower compared to national benchmarks. We are one of the top 3 programs in the nation with the most experience with STAT 5 (highest complexity) cases.
2020 POST-OPERATIVE LOS BY STAT CATEGORY 50
136
Source: 2015-2018 STS Public Reporting Data, available at https://publicreporting.sts.org/chsd
STAT CATEGORY 5
19 DAYS
40
2017–2020 STAT 5 CASES DAYS
VOLUMES
CARDIAC SURGERY
30
U-M LOS
48 DAYS
20 10 0
STS LOS 1
2
3 STAT CATEGORY
4
5
n U-M: 2020 LOS n STS: 2015–2018 LOS (MOST RECENT DATA AVAILABLE)
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VOLUMES AND OUTCOMES
QUALITY IMPROVEMENT
CLINIC VISITS
13,593
ELECTROPHYSIOLOGY CASES
We lead multiple ongoing initiatives aiming to further optimize patient outcomes and quality of care.
ECHOCARDIOGRAMS
Major complication rate 0%
MORTALITY As a result of these efforts, our operative mortality rates are at a sustained historic low (see page 7 for further details).
241
15,072
TRANSPLANTS
22
CATHETERIZATIONS
760
98% survival*
MORBIDITIES Several ongoing projects aim to reduce complications and other morbidities, including cardiac arrest, infections, and length of stay, among others. One recent project focused on enhanced recovery from surgery, safely reducing length of stay in the hospital after surgical procedures.
Major complication rate 0.26% 2020 DATA UNLESS OTHERWISE SPECIFIED
*2018–2020 TRANSPLANT SURVIVAL
Average Length of Stay After STAT 1 Surgeries 16
CARDIAC ICU
14
SHORTEST ICU LENGTH OF STAY 18 days
~20% reduction
12 10 DAYS
Post-Operative Risk-Adjusted Average ICU Length of Stay
PROJECT START
8 6 4
0 6 days
0 days
n U-M
n OTHER SITES
SOURCE: Pediatric Cardiac Critical Care Consortium (PC4) TIME FRAME: 2020 data vs. high-volume sites
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Jan 17 (7) Feb 17 (2) Mar 17 (10) Apr 17 (9) May 17 (6) Jun 17 (14) Jul 17 (10) Aug 17 (13) Sept 17 (7) Oct 17 (10) Nov 17 (5) Dec 17 (7) Jan 18 (9) Feb 18 (7) Mar 18 (6) Apr 18 (13) May 18 (6) Jun 18 (8) Jul 18 (13) Aug 18 (10) Sept 18 (13) Oct 18 (12) Nov 18 (13) Dec 18 (6) Jan 19 (10) Feb 19 (6) Mar 19 (7) Apr 19 (5) May 19 (8) Jun 19 (15) Jul 19 (14) Aug 19 (13) Sept 19 (10) Oct 19 (11) Nov 19 (6) Dec 19 (13) Jan 20 (6) Feb 20 (9) Mar 20 (2) Apr-May 20 (4) Jun 20 (3) Jul 20 (9) Aug 20 (13) Sept 20 (7) Oct 20 (7) Nov 20 (14) Dec 20 (2)
2
12 days
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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 investigation. Pediatric Heart Network core site We are one of nine centers across the country selected to participate in the Pediatric Heart Network, 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.
2020 CONGENITAL HEART CENTER RESEARCH ACTIVITY
>150 >75 >160
ONGOING PROJECTS
ACTIVE GRANTS
ANNUAL PUBLICATIONS
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Novel devices and technology We lead the development and testing of novel devices tailored toward the pediatric heart population. Examples include: 3-D airway splints As reported in the New England Journal of Medicine, we have developed and implanted the first bioresorbable airway splints created using 3D printing technology. These splints have been implanted in 28 patients to date with life-threatening airway narrowing, many of which are also impacted by congenital heart disease. 3D visualization technologies We are developing unique ways of utilizing virtual and printed 3D models to prepare for and guide cardiac surgery and transcatheter interventions. We have teamed up with other U-M experts to advance the use of computational fluid dynamics to help predict procedural outcomes in our patients. Donor heart preservation technology Our investigators are developing technology to allow prolonged perfusion of donor hearts with the aim of improving organ availability and viability for pediatric heart transplant. Regenerative medicine We lead studies exploring new treatments for children with heart failure through the use of stem cells and tissue engineering.
Connecting data across the country to enable more discoveries, faster improvement We lead data coordinating center activities for Cardiac Networks United, which integrates multiple large networks spanning in total more than two-thirds of the nation’s congenital heart programs. These initiatives bring multiple data sources and expertise together to drive novel research otherwise not possible, and translate discovery to the bedside across hospitals to improve outcomes. Precision medicine Through multiple lines of investigation, we aim to study and develop more individualized strategies for prevention, recognition, and treatment of adverse events tailored to the specific traits and needs of each heart patient. Improving outcomes across the lifespan We are one of the first programs in the country to systematically track long-term survival, morbidities, and quality of life for children undergoing heart surgery at our center, regardless of where they live or receive follow-up care. We have developed a novel patient-reported outcomes portal that will drive a better understanding of these critical outcomes, conduct numerous studies geared toward optimizing neurodevelopment, and have a unique program focused on optimizing psychosocial outcomes.
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Marquette
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.
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Petoskey ■
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Traverse City
Flint ■ Grand Rapids ■ Lansing ■ Ypsilanti ■ ■ Northville Kalamazoo ■ Ann Arbor ■
Patient and Family Support Services •
Patient and Family Centered Care program
• E xperience providing seamless care for children around the country and across the globe with over 20% of our congenital heart surgery patients traveling to Mott for expert care from out of state
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On-site Ronald McDonald House
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Travel and lodging coordination and support
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Hospital school and educational services
• R emote echocardiography and telemedicine capabilities
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Spiritual care
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Child life
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Social work
• C omprehensive transport services when transfer is needed
Congenital Heart Center 1540 East Hospital Drive Ann Arbor, MI 48109-4204 Patients and Families 1-734-764-5176
Toledo, OH
Coordinated Services for Families Traveling for Care
Alpena
Referring Physicians 1-800-962-3555 www.mottchildren.org/congenital @MottChildren 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, Mark S. Schlissel, ex officio Executive Officers of Michigan Medicine Marschall S. Runge, M.D., Ph.D., Executive Vice President for Medical Affairs University of Michigan, Dean, U-M Medical School, CEO, Michigan Medicine; Matthew Comstock, M.B.A., M.H.S.A Executive Director for Administration, Chief Operating Officer; Steven Kunkel, Executive Vice Dean for Research and Chief Scientific Officer; David C. Miller, M.D., M.P.H., President, University of Michigan Health System, Executive Vice Dean for Clinical Affairs; Michael Mulholland, M.D., Senior Associate Dean for Clinical Affairs and Executive Director, University of Michigan Medical Group; Brian Zink, M.D., Interim Executive Vice Dean for Academic Affairs A Non-discriminatory, Affirmative Action Employer ©2021 Regents of the University of Michigan