2020 Congenital Heart Center Outcomes & Highlights Report from C.S. Mott Children's Hospital

Congenital Heart Center 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 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

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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 COORDINATED CARE, CLOSE TO HOME • 13 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 CUTTINGEDGE 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 • P atient and Family Centered Care program, on-site Ronald McDonald House, support for travel and lodging coordination, hospital school services, spiritual care, and many other resources

ACROSS MICHIGAN AND AROUND THE GLOBE WE HAVE CARED FOR PATIENTS FROM:

Every county in Michigan n All 50 states n 60 countries

2008-2018 SURGICAL REFERRALS

BY THE NUMBERS

41

PEDIATRIC CARDIOLOGISTS

5

CONGENITAL CARDIAC SURGEONS

13

PEDIATRIC CARDIAC ANESTHESIOLOGISTS

22

ADVANCED PRACTICE PROVIDERS

13

CLINIC LOCATIONS 2019 DATA

3

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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 5,000 visits annually Cardiac Anesthesia Service 13 pediatric cardiac anesthesiologists providing comprehensive anesthesia services Cardiac Catheterization Staffed by three pediatric interventional cardiologists with advanced training, performing more than 700 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 500 studies performed annually Cardiac Nursing Specialized inpatient and outpatient teams, nursing Magnet designation 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 13 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, approximately 800 cases annually

Echocardiography Staffed by 13 pediatric cardiologists and 10 sonographers with advanced training in 2D, 3D, transesophageal, and fetal imaging, performing more than 17,000 studies annually across Mott and outreach locations

Pediatric Acute Cardiac Care Unit 32-bed telemetry unit, multidisciplinary patientcentered pediatric heart care

Electrophysiology & Heart Rhythm Program Staffed by three pediatric electrophysiologists with advanced training, providing the full spectrum of pediatric EP services

Prenatal Program & Fetal Intervention More than 1,300 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

Exercise Physiology & Vascular Lab Performs the full complement of exercise protocols, vascular measurements, and testing Heart Failure & Transplant Staffed by three pediatric heart failure/transplant specialists with advanced training, more than 500 outpatient visits and 15 heart transplants annually, expertise in advanced heart failure management, cardiomyopathy and pediatric ventricular assist devices (VADs) Hybrid Intervention Experienced team of surgeons and interventional cardiologists performing hybrid stage I for high-risk single ventricle patients and hybrid pulmonary artery interventions 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 Cardiothoracic Intensive Care Unit 20-bed dedicated cardiac ICU with 24/7 in-house attending coverage

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, the U-M Congenital Heart Center Psychosocial and Educational Program, leads novel clinical and research initiatives geared toward understanding and promoting coping and development, and addressing stressors such as procedural distress, adjustment to illness, mental health, and educational challenges. Our team includes psychologists, social workers, child life specialists, school liaisons/teachers, creative arts therapists, and parent/peer mentors.

Single Ventricle Follow-Up Clinic Multidisciplinary team (cardiology, gastroenterology, nephrology, neurology, psychology, etc.) providing comprehensive, coordinated longitudinal care and education for single ventricle patients in coordination with their primary cardiologist

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VOLUMES AND OUTCOMES

2019 TOTAL CARDIAC SURGERY VOLUME

n U-M

We have excellent outcomes compared to national benchmarks and continually strive to further optimize results.

2019 OPERATIVE MORTALITY BY STAT CATEGORY 15

2.84%

12 PERCENT

Our congenital cardiac surgery program is considered one of the highest-volume programs in the nation by the Society of Thoracic Surgeons (STS).

OUTCOMES

2019 U-M OPERATIVE MORTALITY — a historic 10-year low

9 6 3 0

n U-M: 2019 UNADJUSTED OPERATIVE MORTALITY

1

2

3

4

5

STAT CATEGORY

n STS

n STS: 2015–2018 UNADJUSTED OPERATIVE MORTALITY

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.

2019 POST-OPERATIVE LOS BY STAT CATEGORY

Source: 2015-2018 STS Public Reporting Data, available at https://publicreporting.sts.org/chsd

26 DAYS

40

2015–2018 STAT 5 CASES

130

STAT CATEGORY 5

50

DAYS

VOLUMES

CARDIAC SURGERY

U-M LOS

30

48 DAYS

20 10 0

STS LOS 1

2

3 CATEGORY

4

5

n U-M: 2019 LOS n STS: 2015–2018 LOS

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VOLUMES AND OUTCOMES

QUALITY IMPROVEMENT

CLINIC VISITS

ELECTROPHYSIOLOGY CASES

We lead multiple ongoing initiatives aiming to further optimize patient outcomes and quality of care.

Major complication rate 0%

MORTALITY As a result of these efforts, our operative mortality rates are at a historic 10-year low (see page 7 for further details).

13,857

311

ECHOCARDIOGRAMS

17,012

TRANSPLANTS

CATHETERIZATIONS

96% survival*

15

715

MORBIDITIES Several ongoing projects aim to reduce complications and other morbidities, including infections, cardiac arrest, and length of stay, among others.

One recent project reduced average post-operative chest tube duration by nearly a day (23 hour reduction). This fosters faster recovery from surgery for our patients.

Major complication rate 1.5% 2019 DATA UNLESS OTHERWISE SPECIFIED

*2018–2019 TRANSPLANT SURVIVAL

Average Chest Tube Duration

ONE OF

TOP 3 CENTERS

WITH SHORTEST ICU LENGTH OF STAY

Post-Operative Risk-Adjusted Average ICU Length of Stay 18 days

90

HOURS

CARDIAC ICU

Protocol Initiation

120

60 30

12 days

6 days

0 days

n U-M

n OTHER SITES

SOURCE: Pediatric Cardiac Critical Care Consortium (PC4) TIME FRAME: Past 24 months, vs. other high-volume sites

8

2019_09

2019_08

2019_07

2019_06

2019_05

2019_04

2019_03

2019_02

2019_01

2018_11

2018_12

2018_10

2018_09

2018_08

2018_07

2018_06

2018_05

2018_04

2018_03

2018_02

2018_01

2017_11

2017_12

2017_10

2017_09

2017_08

2017_07

0

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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.

Recent studies have included the FUEL trial in Fontan patients studying novel drug therapies, and the related FALD study (led by Michigan Medicine) which evaluates impact on liver health.

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 3-D printing technology. These splints have been implanted in 27 patients to date with life-threatening airway narrowing, many of whom are also impacted by congenital heart disease.

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.

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Regenerative medicine Our team is leading 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 five 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 recently initiated a new program focused on expanding psychosocial care and research.

2019 CONGENITAL HEART CENTER RESEARCH ACTIVITY

>150

ONGOING PROJECTS

>50

ACTIVE GRANTS

>170

ANNUAL PUBLICATIONS

11

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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Coordinated Services for Families Traveling for Care • E xperience providing seamless care for children around the country and across the globe with 25% of our congenital heart surgery patients traveling to Mott for expert care from out of state • R emote echocardiography and telemedicine capabilities

Marquette

• C omprehensive transport services when transfer is needed

Charlevoix ✦ Traverse City ■

■

Petoskey ■ ✦

Alpena

Gaylord

Flint ■ Grand Rapids ■ Lansing ■ ■ Brighton Northville Kalamazoo ■ Jackson ■ Ypsilanti Hillsdale ✦ Ann Arbor ■■

Toledo, OH n Clinics

✦ ECHO/EKG services

■

Patient and Family Support Services •

atient- and family-centered care P program

•

On-site Ronald McDonald House

•

ravel and lodging coordination T and support

•

Hospital school and educational services

•

Spiritual care

•

Child life

•

Social work

Congenital Heart Center 1540 East Hospital Drive Ann Arbor, MI 48109-4204 Patients and Families 1-734-764-5176 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, Shauna Ryder Diggs, 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, dean, University of Michigan Medical School, CEO, Michigan Medicine; David A. Spahlinger, M.D., president, UMHS, and executive vice dean for clinical affairs, University of Michigan Medical School; Carol R. Bradford, M.D., chief academic officer, Michigan Medicine, and executive vice dean for academic affairs, University of Michigan Medical School; Steven L. Kunkel, Ph.D., chief scientific officer, Michigan Medicine, and executive vice dean for research, University of Michigan Medical School A Non-discriminatory, Affirmative Action Employer ©2020 Regents of the University of Michigan