U-M C.S. Mott Children's Hospital Congenital Heart Center 2015 Report

Congenital Heart Center ACTIVITY REPORT

Extraordinary heart care for children throughout Michigan, around the nation and across the globe WE HAVE CARED FOR CHILDREN FROM:

EVERY COUNTY IN

MICHIGAN ALL

50 STATES

AND

60 COUNTRIES

By the Numbers

2

Clinical Programs at a Glance

3

Lifelong Longitudinal Care and Outcomes

5

Transparency and Collaboration to Improve the Quality of Pediatric Cardiac Care

6

Pediatric Cardiac Surgery

8

Interventional Cardiology

10

Electrophysiology 12 Non-invasive Imaging

15

Fetal Heart Program

16

Heart Failure and Transplant

17

Adult Congenital Heart Program

18

Caring for Patients and Families

19

Research and Innovation

20

Educational Programs

23

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Co-Directors, U-M Congenital Heart Center Richard G. Ohye, MD Head, Section of Pediatric Cardiovascular Surgery John R. Charpie, MD, PhD Director, Division of Pediatric Cardiology Christine La Jeunesse, MHSA Administrative Director

Leaders in Pediatric Heart Care, Discovery, and Education Providing compassionate patient- and family-centered care to children throughout Michigan, around the nation, and across the globe, the Congenital Heart Center at the University of Michigan C.S. Mott Children’s Hospital is an international referral center for complex congenital heart disease, and is one of the largest and most experienced congenital heart programs in the United States.

From diagnosis and management of common cardiac disorders to application of the most innovative and cutting-edge therapies available for children with complex conditions, our specialists are committed to providing the most advanced, evidence-based care for infants, children and adolescents with all forms of congenital and acquired heart disease, as well as for adults with congenital heart disease.

Our unique multi-disciplinary research program — the Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) Program — brings together specialized staff and faculty from across the Congenital Heart Center, and the unique resources and expertise at the University of Michigan, to support innovative research and drive improvements in quality of care and outcomes for children with heart disease.

Through our extensive training programs in pediatric cardiology and congenital heart surgery, along with many educational offerings throughout the year for patients & families and practitioners alike, we are committed to providing cutting-edge education and information regarding the latest advances in congenital heart care, and to prepare the next generation to serve as leaders in the field.

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National Advisory Board Our National Advisory Board is comprised of leaders from multiple disciplines including medicine, education, finance, information technology and other fields, along with families who have been impacted by congenital and acquired pediatric heart disease. The Board provides guidance critical to achieving our mission and supporting our relentless commitment to excellence.

2015 BY THE NUMBERS 35

25

3,532

PEDIATRIC CARDIOLOGISTS

ADVANCED PRACTICE NURSES

OUTREACH CLINIC VISITS

4

12

902

PEDIATRIC CARDIAC SURGEONS

CLINIC LOCATIONS

INPATIENT DISCHARGES

22

10,062

836

PEDIATRIC CARDIOLOGY FELLOWS

2

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C.S. Mott Children’s Hospital

ANN ARBOR CLINIC VISITS

TOTAL SURGICAL VOLUME

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Clinical Programs at a Glance C.S. Mott Children’s Hospital is a 1.1 million square foot, 348 bed free-standing facility. Our highly specialized Congenital Heart Center team provides comprehensive care spanning all aspects of acquired and congenital pediatric heart disease and adult congenital heart care.

Pediatric Cardiac Surgery International referral center, 4 pediatric cardiac surgeons, 2 dedicated cardiac OR’s, 800–900 cases performed annually Pediatric Cardiothoracic Intensive Care Unit 30-bed dedicated cardiac ICU with 24/7 in-house attending physician coverage Cardiac Step Down and General Care Unit 32-bed telemetry unit, provides multidisciplinary patient-centered care Cardiac Catheterization Lab Staffed by 4 pediatric interventional cardiologists, performs approximately 750 cases annually, spanning the full spectrum of interventional procedures Hybrid Program Experienced program performing procedures such as hybrid Stage 1 for high-risk single ventricle patients and hybrid pulmonary artery interventions Electrophysiology Services Staffed by 4 pediatric electrophysiologists, provides the full spectrum of EP services, including 150–200 ablations annually Echocardiography Lab Staffed by 12 pediatric cardiologists with advanced imaging training and 10 sonographers with extensive skills in 2D, 3D,TEE, and fetal imaging, performs more than 14,000 studies annually

Cardiac MRI Staffed by 2 pediatric cardiologists with advanced MRI training, >400 studies performed annually Fetal Heart Program Performs more than 950 fetal studies annually, expertise in performing fetal cardiac interventions Exercise Physiology and Vascular Lab Performs the full complement of exercise protocols, and vascular measurements and testing, over 600 exercise tests performed annually Heart Failure/Transplant Program Staffed by 2 pediatric cardiologists with advanced training in pediatric heart failure/transplant, 300+ outpatient visits and approximately 10 transplants performed annually, expertise in advanced heart failure management, comprehensive pediatric VAD program Pulmonary Hypertension Program Inpatient and outpatient program staffed by a dedicated team Adult Congenital Heart Disease Program Staffed by 2 faculty with ACHD boardcertification, more than 1900 visits annually Inter-stage Home Monitoring Multi-disciplinary team provides inter-stage home monitoring services for single ventricle patients

Clinics General pediatric cardiology and specialty clinics are staffed each day at our main campus and several outreach clinics, with more than 13,000 visits annually Prevention Clinic: Provides care to children with lipid abnormalities and hypertension, with more than 300 visits annually Single Ventricle Multidisciplinary Clinic: Multidisciplinary team including expertise in pediatric cardiology, gastroenterology, nephrology, neurology and psychology, providing comprehensive longitudinal evaluation and care for single ventricle patients Cardiac Genetics Clinic: Staffed by a pediatric cardiologist, geneticist, and genetic counselor, evaluates patients with heritable cardiovascular conditions Cardio-Oncology Clinic: Provides care to children with a history of cancer at risk for cardiomyopathy Muscular Dystrophy Clinic: Staffed by pediatric cardiology, neurology, physical medicine and rehabilitation, serving patients with a range of neuromuscular disorders Neurodevelopmental Follow-up Program: Provides early identification of neurodevelopmental impairment and behavioral concerns and referral for appropriate treatment for CHD patients of all ages; multidisciplinary team includes a pediatric cardiologist, psychologist, neurologist, nurse, and social worker

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Lifelong Longitudinal Care and Outcomes With the dramatic improvements in early survival for patients with congenital heart disease over recent decades, it has become increasingly important to shift our focus to optimizing long-term care and outcomes. We have pioneered efforts in this area through our unique, comprehensive Longitudinal Outcomes Program, which encompasses both clinical care and research/quality improvement activities. Our goal is not only to help children with these conditions simply survive into adulthood, but also to determine the optimal treatments to allow them to thrive and enjoy an excellent long-term quality of life.

Clinical Program ■

Single Ventricle Multidisciplinary Program • Comprehensive team providing integrated multidisciplinary care for single ventricle survivors

■

Inter-stage Home Monitoring Program • Monitors and optimizes inter-stage care for single ventricle patients

■

Neurodevelopmental Follow-up Program • Provides evaluation, referral, and treatment of neurodevelopmental and behavioral concerns in CHD patients of all ages

■

Adult Congenital Heart Disease Program • Board-certified team provides comprehensive transition and ACHD services

Research and Quality Improvement Program ■

tandardized Longitudinal Data Collection S • One of two heart centers across the US to offer a unique program that partners with patients and families to collect standardized longitudinal follow-up data across the lifespan on all patients undergoing Society of Thoracic Surgeons Benchmark Operations

■

Integrated Congenital Heart Center Data Warehouse • Unique infrastructure integrates data and information across the electronic health record, registries, and other datasets to support research and quality improvement activities across the lifespan

■

ocused Research and Quality Improvement Projects F • Multiple ongoing projects focused on understanding and optimizing long-term care and outcomes

■

dvocacy and Health Policy A • Our faculty serve as advocates for healthcare policies and funding to support the optimal care of CHD patients across the lifespan

For more information on our research and quality improvement activities, see page 20.

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Transparency and Collaboration to Improve the Quality of Pediatric Cardiac Care The Congenital Heart Center is committed to transparency, collaboration, and sharing of data to improve the quality of pediatric cardiac care for our patients and children with congenital heart disease around the country.

Sharing Data with Patients, Families, and Other Stakeholders We aim to provide patients, families, referring providers, and other stakeholders with the most up-to-date and transparent data as possible regarding our outcomes, in order to support the most informed care decisions.

U-M REPORTED OUTCOMES DATA

www.mottchildren.org/congenital

have included statewide efforts to organize and implement pulse oximetry screening in Michigan, an initiative (Project ADAM) that provides schools across the state with guidance and support on how to minimize the risk of sudden cardiac death, and national initiatives such as the Congenital Heart Legislative Conference, advocating for federal funding to support CHD research.

Research Our investigators participate in and lead national initiatives geared toward better understanding and measuring quality of pediatric cardiac care. These include projects focused on developing composite measures of quality incorporating aspects of both morbidity and mortality after congenital heart surgery, optimizing measures of ICU quality of care, and refining risk models in pediatric heart transplant.

STS PUBLIC REPORTING PROGRAM

www.sts.org/congenital-public-reporting-module-search

Advocacy Congenital Heart Center faculty serve on the Medical Advisory Board of the Pediatric Congenital Heart Association (PCHA), a national advocacy organization. We have collaborated to organize and participate in national Transparency Summits aiming to support broader sharing of congenital heart outcomes and quality data with patients and families. The Fall 2017 Transparency Summit will be hosted by the C.S. Mott Children’s Hospital in collaboration with PCHA in Ann Arbor, MI. Our faculty and staff also actively participate in and serve in leadership roles across several other collaborative advocacy activities aimed at improving CHD care and outcomes. These

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Collaborative Quality Improvement The Congenital Heart Center is a leader and collaborative participant in multiple initiatives aiming to promote sharing of data across hospitals, and identification and dissemination of best practices to improve outcomes and quality of care. These have included projects to reduce the duration of post-operative mechanical ventilation, and optimize interstage outcomes in single ventricle patients, among many other initiatives.

U-M leads the Pediatric Cardiac Critical Care Consortium (PC4), which now includes 30 participating centers, and supports collaborative and transparent exchange of information toward improving outcomes across all centers. For more information on PC4, please see page 20.

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Pediatric Cardiac Surgery Over the past two decades alone, our pediatric cardiac surgery program has cared for nearly 25,000 patients, making us one of the largest, most experienced programs worldwide. The pediatric cardiac surgeons at C.S. Mott Children’s Hospital have earned international renown for their expertise in treating the most complex congenital heart defects. Our program is an international referral center for conditions such as hypoplastic left heart syndrome and other single ventricle lesions, high-risk biventricular repairs, complex forms of transposition of the great arteries and many other congenital abnormalities.

Extensive Experience Treating the Most Complex Cases As we have continued to grow as an international destination for complex congenital heart disorders, our patient population has taken on an increasingly high-risk profile. Of the 61 programs reporting their 2012–2015 outcomes on the Society of Thoracic Surgeons (STS) Public Reporting Website, we were one of two US centers performing the highest number of STAT category 5 (highest complexity category) cases during this time period.

Excellent Outcomes We have achieved excellent outcomes, performing better than what would be expected for our complex case-mix, and receiving a 3-star rating — the highest designation awarded by the STS — in three of the past five biannual reporting periods.

Research and Quality Improvement We lead and participate in numerous projects aiming to advance care and outcomes for patients undergoing pediatric and congenital heart surgery. Please see page 20 for a description of our research initiatives.

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Our pediatric cardiac surgery program is considered one of the highest-volume programs in the nation by the STS.

We are one of two programs in the nation performing the highest number of STAT Category 5 cases.

2015 TOTAL CARDIAC SURGERY VOLUME Our annual surgical volume significantly exceeds the 250 cases/year benchmark that the STS uses to identify high-volume programs.

1,000 800

836

600 400 200

2012–2015 STAT 5 CASES

143

250

0

Source: 2012–2015 STS Public Reporting Data, available at http://www.sts.org/congenital-public-reporting-module-search

■ U-M ■ STS Benchmark

U-M’s pediatric cardiac surgery mortality rates are lower than national benchmarks particularly for the most complex cases.

U-M’s post-operative length of stay (LOS) is substantially shorter compared to national averages.

STAT CATEGORY 5

STAT CATEGORY 5

12.3% 15.8% U-M MORTALITY

STS AVERAGE

30-DAY MORTALITY BY STAT CATEGORY

10 5

STS LOS

POST-OPERATIVE LENGTH OF STAY BY STAT CATEGORY 50

U-M median post-operative length of stay (2012–2015), as compared with STS national data.

40

DAYS

15 PERCENTAGE

U-M LOS

2012–2015 data. STAT = Society of Thoracic Surgeons-European Association for Cardiothoracic Surgery Risk Stratification System. Category 1 = least complex cases.

Category 5 = most complex cases.

20

0

23 DAYS 40 DAYS 30 20 10

1

2

3

4

CATEGORY ■ U-M

■ STS

5

0

1

2

3

4

5

CATEGORY ■ U-M

■ STS

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2015 CARDIAC CATHETERIZATION VOLUME

751

2015 HYBRID PROCEDURES

>20

INCLUDING 6 HYBRID STAGE 1 PROCEDURES

TOTAL VALVE PROCEDURES

>100 20 1 of 7 1 of 10

Melody® Valve Implants

SAPIEN™ Transcatheter Pulmonary Valve Implants Centers in the SAPIEN™ COMPASSION Trial Centers in the Melody® Post-Approval Study

1 of 10

Interventional Cardiology The Interventional Cardiology Program at C.S. Mott Children’s Hospital is the region’s most comprehensive program, offering interventional catheterization for fetuses, infants, children and adolescents, as well as adults with congenital heart disease. Our state-of-the-art diagnostic and interventional suites are staffed by a dedicated team of experienced pediatric interventional cardiologists, technologists, anesthesiologists and nurses.

Working seamlessly with our colleagues in pediatric cardiac surgery, we are committed to unparalleled care for our patients and a close collaboration with our referring physician partners. As one of the first children’s hospitals in the U.S. to offer cardiac MR fusion with fluoroscopy and 3-D reconstruction of rotational angiography, we continue to develop and utilize innovative techniques to optimize patient outcomes and minimize radiation exposure to provide the safest care possible.

Hybrid Program Hybrid interventions combine surgical and transcatheter techniques to optimize outcomes.

Surgeons work in tandem with our cardiac interventionalists to perform complex procedures less invasively than with traditional surgical techniques and on smaller patients than with catheterization alone. We have developed extensive experience in performing hybrid Stage 1 procedures in high-risk single ventricle patients, as well as other hybrid procedures including pulmonary artery interventions.

Valve Implants Our team has performed more than 100 Melody® transcatheter valve implants, including in the pulmonary, tricuspid, mitral and branch pulmonary artery positions, and more than 20 SAPIEN™ transcatheter pulmonary valve implants, including in the native right ventricular outflow tract. We are one of seven centers participating in the COMPASSION trial (COngenital Multicenter trial of Pulmonic vAlve regurgitation Studying the SAPIEN interventIONal transcatheter heart valve) and one of 10 centers in the Melody® Post-Approval Study.

CENTERS

in the GORE Septal Occluder Trial

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Research and Quality Improvement We are committed to making catheterization procedures as safe as possible for our patients. We participate in two national pediatric interventional cardiology quality improvement initiatives, the American College of Cardiology Improving Pediatric and Adult Congenital Treatment Registry (IMPACT®), and the Congenital Cardiac Catheterization Outcomes Project (C3PO).

Our team also leads and participates in numerous research projects geared toward understanding and improving outcomes for children undergoing cardiac catheterization, including several large clinical trials examining new devices and technologies. Other recent projects include: ■

■ ■

U tility of cardiac MRI in predicting coronary artery compression during transcatheter pulmonary valve implantation O utcomes of hybrid stage I palliation in high risk neonates with single ventricle physiology C omputational fluid dynamics using DynaCT for aortic coarctation stenting

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2015 TOTAL ELECTROPHYSIOLOGY VOLUME

273

PACEMAKER PROCEDURES

37

ICD IMPLANTS

9

CARDIOVERSIONS

37

EP STUDIES

190 ABLATIONS

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Electrophysiology The electrophysiology program at C.S. Mott Children’s Hospital is the Midwest’s largest program, performing diagnostic testing and treatments for heart rhythm abnormalities. Local, regional and international patients seek the care of this group of experts.

Heart Rhythm Devices Our team has extensive experience with implantation of pacemakers, conventional defibrillators, and implantable rhythm monitors, as well as with new technologies such as the subcutaneous implanted defibrillator (S-ICD), which offers a less invasive option for patients at a risk of life-threatening rhythm problems.

Catheter Ablation All ablation procedures at the C.S. Mott Children’s Hospital are performed with 3-dimensional mapping systems and minimal X-ray, achieving lower patient radiation exposure than nationally published rates. Radiofrequency and cryoablation are both available.

Noninvasive Testing

Arrhythmia Clinic Our outpatient Arrhythmia Clinic at C.S. Mott Children’s Hospital provides specialized care by pediatric electrophysiologists and nurse practitioners across the spectrum of rhythm disorders. We also provide heart rhythm care, pacemaker, and defibrillator outreach clinics in Lansing, Marquette, Traverse City, and Petoskey, MI, and Toledo, OH.

Research and Quality Improvement We participate in benchmarking and quality activities through the MAP-IT Registry of the American College of Cardiology. Our electrophysiologists use computerized mapping technologies to minimize the use of x-ray, and the majority of ablation procedures are performed with less than one minute of x-ray time, resulting in a very low radiation exposure for our patients.

Additional research areas include implanted defibrillator complications, supraventricular tachycardia treatment, new energy sources for pacemakers, and safe physical activities for patients with Long QT syndrome.

Outpatient monitoring, exercise testing, and other non-invasive tests are coordinated through our electrocardiography laboratory, and can be performed on the same day as clinic appointments.

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Non-invasive Imaging Echocardiography

Our dedicated pediatric cardiac diagnostic services provide high-quality non-invasive imaging by specially-trained sonographers and physicians with advanced training in pediatric cardiac imaging and functional assessment. We utilize advanced imaging to diagnose the most complex congenital anomalies and to facilitate and plan interventional and surgical care. Procedures are coordinated whenever possible to allow for convenient, sameday testing. We offer state-of-the-art techniques, including 3-D echocardiography, intracardiac ultrasound, and functional assessments. All tests are interpreted by dedicated pediatric cardiologists with specialized training in non-invasive imaging.

Research and Quality Improvement Our faculty are national leaders in advancing the understanding of echo imaging of the child’s heart. The lab is involved in research studies establishing normal values for pediatric echocardiography, and investigating ideal approaches to cardiovascular management and imaging of children with single ventricle defects, rheumatic heart disease, and sickle cell disease. Two of our faculty currently serve on the Steering Committee of the Pediatric Council of the American Society of Echocardiography, including one as chair-elect.

Outreach Our goal, whenever possible, is to reduce travel burden and costs for patients, while creating a meaningful, efficient consultative relationship with our partners throughout the region. We currently

2015 TOTAL ECHOCARDIOGRAPHY VOLUME provide echocardiography services at 12 locations throughout the state. In addition, through our cardiology telemedicine program, U-M pediatric cardiologists are available to provide remote echo interpretation and cardiovascular consultation as needed for referring providers located outside the Ann Arbor area.

Cardiovascular MRI

Cardiovascular MRI for pediatric and congenital heart disease, including adult congenital patients, is performed at C.S. Mott Children’s Hospital on state-of-the-art scanners. All studies are interpreted by dedicated pediatric cardiologists with advanced training in non-invasive imaging.

MRI studies are often coordinated ahead of time with clinic visits for same day service. We work closely with the pediatric cardiac anesthesia service to care for patients who require sedation or anesthesia for their study.

Research and Quality Improvement Our team is active in clinical and translational research. Recent studies have evaluated the use of MRI for patients with tetralogy of Fallot and single ventricle heart disease and investigated the use of newer techniques such as myocardial strain analysis and T1 mapping. A new federally-funded study in collaboration with engineering colleagues will evaluate: “Image-based Multi-scale Modeling Framework of the Cardiopulmonary System: Longitudinal Calibration and Assessment of Therapies in Pediatric Pulmonary Hypertension.”

14,113 ANN ARBOR TTE

9,327

TEE

474

Fetal

805 6

ICE OUTREACH CLINICS

3,331

TTE

170

Fetal

2015 TOTAL CARDIOVASCULAR MRI VOLUME

436

ECHO OUTREACH LOCATIONS

Marquette Iron Mountain Petoskey Gaylord Traverse City

Charlevoix

Alpena

Grand Rapids Lansing Ann Arbor Jackson

Northville Ypsilanti

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Fetal Heart Program In collaboration with the U-M Fetal Diagnosis and Treatment Center, our fetal heart specialists provide the full spectrum of fetal diagnostic, interventional and delivery planning services.

2015 TOTAL FETAL ECHO VOLUME

975

2015 FETAL PATIENTS WITH HEART DISEASE

ANN ARBOR

805

OUTREACH

170

236

Fetal Intervention Services Our specialized fetal intervention services include catheterbased fetal cardiac interventions for babies who are candidates, including those with critical aortic stenosis or hypoplastic left heart syndrome complicated by a restrictive atrial defect. Over the years, we have become established as a high-acuity fetal program offering major fetal interventions that are not widely available. Michigan ranks as one of the top fetal heart programs worldwide in volume of fetal cardiac interventions, having performed interventions since 2008.

Research and Quality Improvement The Fetal Heart Program works collaboratively with colleagues across the country to optimize care for our tiniest patients and their families through efforts such as the National Pediatric Cardiology Quality Improvement Collaborative, the International Fetal Cardiac Intervention Registry, and the Fetal Heart Society. Recent research projects led by our investigators have included a randomized trial investigating a strategy to reduce maternal stress in mothers of infants with single ventricle heart disease.

Outreach Our fetal cardiologists currently see patients in Ann Arbor, Northville, Lansing, and Marquette. We work closely with referring physicians to co-manage the pregnancy and to continue routine care close to home as much as possible.

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U-M ranks as one of the highestvolume programs worldwide for fetal cardiac interventions.

(Source: International Fetal Cardiac Intervention Registry)

www.mottchildren.org/congenital

Heart Failure and Transplant Heart Transplant Program Our program has performed more than 200 pediatric heart transplants since the transplant program began in 1984, consistently reporting low organ rejection rates and high patient survival rates that rank among the world’s best.

Our dedicated, multidisciplinary team of pediatric cardiac transplant surgeons, heart failure and transplant cardiologists, nurses, pharmacists, nutritionists and social workers provides coordinated and comprehensive evaluation, treatment and follow-up management, including a full spectrum of support services to children and their families. The full multidisciplinary team meets and reviews pre- and post-transplant patients weekly to assure the best and most comprehensive care is provided to each individual patient.

We participate in multiple organ transplant listings and have experience performing combination transplants such as heart/kidney or heart/liver.

As a part of treatment for advanced heart failure, our center employs a comprehensive ventricular assist device program with experience in multiple devices appropriate for pediatric patients.

We also offer comprehensive pulmonary hypertension and cardio-oncology services.

Research and Quality Improvement Our innovative research endeavors give patients access to the newest treatments available. Our heart failure/transplant team is actively involved in multiple projects, including assessment of modifiable transplant risk factors, quality of life in pediatric heart failure patients, single ventricle transplant risk factors and outcomes, and novel therapies pre- and post-transplant. Each project is ultimately aimed to improve care in this complex patient population.

2015 TRANSPLANT VOLUME

8

TRANSPLANT OUTCOMES

97%

1-YEAR SURVIVAL 29/30 PATIENTS TRANSPLANTED OVER THE PAST 3 YEARS

OVERALL NUMBER OF PEDIATRIC TRANSPLANT PATIENTS CURRENTLY FOLLOWED

80

NUMBER OF VENTRICULAR ASSIST DEVICES PLACED IN 2015

5

Heart Failure Services Our team provides comprehensive care for children with advanced heart failure. We have extensive experience evaluating and treating children with heart failure resulting from cardiomyopathy and palliated congenital heart disease, including patients who have undergone the Fontan operation.

TOTAL NUMBER OF PEDIATRIC HEART FAILURE/TRANSPLANT CLINIC VISITS IN 2015

334

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2015 TOTAL ADULT CONGENITAL CLINIC VISITS

1,996 ANN ARBOR

1,659

OUTREACH

337

2015 ADULT CONGENITAL SURGICAL VOLUME

80

Adult Congenital Heart Program Our team provides expert care to adult patients with congenital heart disease throughout the state and region, with extensive experience in adult congenital cardiac imaging, high-risk obstetrics, pulmonary hypertension, cardiomyopathy, and heart failure management.

Percutaneous interventions, among other treatments, offer today’s patients more options for optimal outcomes and quality of life.

To date, we have performed more than 100 percutaneous valve replacements, avoiding the need for repeat open-heart surgery.

Our adult congenital specialists are board-certified in Adult Congenital Heart Disease, Pediatrics, and Internal Medicine.

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Research and Quality Improvement Through several ongoing initiatives we are working to establish best practices and advance the standard of care for adults with congenital heart disease. Current projects include the study of longterm outcomes in adults with tetralogy of Fallot and congenitally corrected transposition of the great arteries, the impact of healthcare reform on adults with congenital heart disease, and efforts geared toward understanding and optimizing the transition process.

Outreach Adult congenital providers see patients in Ann Arbor, Marquette, Lansing, Kalamazoo, Traverse City, and Petoskey.

www.mottchildren.org/congenital

Caring for Patients and Families Patient and Family Centered Care Program (PFCC) Patients and families are integral members of our team. We are committed to partnering with families on every aspect of care, from ensuring family-centered bedside rounding, to including patient or parent advisors as committee members for every aspect of our work, including strategic planning, process improvement initiatives, and research activities.

Our PFCC program and advisors promote these principles throughout the continuum of care, and provide training to patient and parent volunteers to facilitate participation in support groups, educational and advocacy activities, research, and other initiatives.

PATIENT SATISFACTION SCORES (ON A SCALE OF 100)

98 98

CARE GIVEN AT THIS HOSPITAL RECOMMEND HOSPITAL TO OTHERS

Source: June 2016 Press Ganey Survey

Support Services C.S. Mott Children’s hospital offers comprehensive support services to patients and families throughout their hospital stay.

These include an on-site Ronald McDonald house, a hospital school program, spiritual care, a child and family life program, activity centers including an indoor playground, and animal therapy, among many others.

Outreach Clinics

Transport Services

Our goal is to coordinate with referring physicians to keep care close to the patient’s home whenever possible. Our cardiologists also see patients at a number of convenient locations throughout the region. In addition, we offer telemedicine capabilities to connect referring physicians and patients with team members at C.S. Mott Children’s Hospital in real time, without the expense and stress of traveling far from home.

When urgent transport to C.S. Mott Children’s Hospital is necessary, our Survival Flight helicopters and jets, along with expert staff, can accommodate all types of pediatric heart patients, including high-complexity transports, and patients on ECMO or ventricular assist devices.

OUTREACH CLINIC LOCATIONS

11

OUTREACH CLINICS

262

Marquette

2015 TOTAL OUTREACH VISITS

3,532

CHD FAMILIES RECEIVING LODGING AT THE RONALD MCDONALD HOUSE IN 2015

Petoskey Alpena Traverse City

1,109

Grand Rapids Lansing Ann Arbor Kalamazoo

Jackson

ATTENDEES AT BI-ANNUAL CHD PATIENT REUNION

Northville Ypsilanti Toledo, OH

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Research and Innovation One of the primary goals of the U-M C.S. Mott Children’s Hospital Congenital Heart Center is to support research and innovation to drive improvements in quality of care and outcomes for children with heart disease.

Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) Program M-CHORD is a unique program comprised of multidisciplinary faculty, and a dedicated staff, which supports research across the Congenital Heart Center. M-CHORD’s expertise encompasses the full spectrum of clinical investigation, including translational research, clinical trials of new drugs and devices, long-term outcomes studies, health services research, and collaborative quality improvement. Our aim is to push discoveries forward from the laboratory to the clinical setting, and disseminate findings that will benefit children as quickly as possible.

Pediatric Heart Network Core Site

M-CHORD Staff

C.S. Mott Children’s Hospital is one of nine Pediatric Heart Network (PHN) core sites across North America. Funded through the National Heart, Lung, and Blood Institute, PHN centers work together to conduct collaborative multi-center research to address important clinical questions impacting children with heart disease. The PHN Single Ventricle Reconstruction Trial, led by U-M investigators, was the first multi-center randomized trial ever accomplished in the congenital heart surgery population. U-M investigators also lead the PHN biorepository and the PHN Integrated CARdiac Data and Outcomes (iCARD) Collaborative.

Pediatric Cardiac Critical Care Consortium (PC4)

119

ONGOING PROJECTS SUPPORTED THROUGH M-CHORD

20

n

>50 111 ACTIVE GRANTS

C.S. Mott Children’s Hospital

MANUSCRIPTS PUBLISHED IN 2015

The U-M Congenital Heart Center leads a multi-center quality improvement and research collaborative geared toward improving outcomes for critically ill children with heart disease — the Pediatric Cardiac Critical Care Consortium (PC4). There are currently 30 participating sites across the US and Canada. The PC4 registry provides unique real-time feedback and benchmarking to member institutions, and sites commit to sharing data with one another to conduct collaborative research, and identify and disseminate practices associated with high-quality care and outcomes. For more information, please visit pc4quality.org. www.mottchildren.org/congenital

Longitudinal Outcomes Program – Standardized Longitudinal Data Collection We are one of two heart centers in the U.S. to offer a unique program that partners with patients and families to collect standardized longitudinal followup data across the lifespan on patients undergoing the Society of Thoracic Surgeons Benchmark Operations. Through this unique program, which has enrolled nearly 1,000 patients to date, we aim to better understand and optimize longerterm outcomes including survival, reinterventions, overall burden of disease, and quality of life. Our ultimate goal is to determine the optimal treatments to allow children with congenital heart disease to thrive and enjoy an excellent long-term quality of life into adulthood.


Quality and Efficiency of Care Delivery Our investigators lead national efforts to better understand and measure quality of pediatric cardiac care. Our research has suggested that high-quality care is also likely to be associated with reduced health care costs. We are collaborating with national partners to develop performance metrics that incorporate quality measures beyond mortality alone, and to provide integrated feedback regarding both quality of care and healthcare costs to U.S. children’s hospitals.

Michigan Congenital Heart Innovations Collaborative (M-CHIC) M-CHIC is a unique collaborative of physicians, engineers and other scientists across the Congenital Heart Center and University of Michigan focused on jumpstarting the development of innovative devices and therapies. Ongoing projects include: Donor Heart Preservation for Heart Transplantation U-M cardiologists and investigators from the Extracorporeal Life Support laboratory are working to improve the availability of donor hearts for pediatric patients awaiting cardiac transplantation. Investigators aim to develop technology to perfuse donor hearts with an apparatus that provides oxygen and nutrients to the heart during the transportation process. This technology has the potential to increase organ availability, improve viability,

prolong preservation, and allow for the potential to perform functional assessment and immunologic manipulation before proceeding with transplantation.

3-D Printed Tracheal Splint As reported in the New England Journal of Medicine, Congenital Heart Center investigators have collaborated with Pediatric Otolaryngology and U-M Biomedical Engineering to implant the first bioresorbable external airway splints created using 3-D printing technology.

The novel splints are tailor-made for the patient and constructed of bioresorbable material that suspends the airway while also allowing for growth. To date, six patients with life-threatening tracheobronchomalacia have benefited from this new device and are now thriving. In 2017, investigators will initiate an FDA trial to begin the process of making the splint more widely available.

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Basic and Translational Research University of Michigan investigators conduct basic and translational investigation geared toward supporting breakthroughs in congenital heart care.

Personalized Medicine Our investigators conduct research to understand the genetic determinants of congenital heart disease, and to investigate the influence of genetic variations on clinical outcomes including responses to various treatments. The overall goal of this research is to develop a personalized treatment plan for each patient based on the genetic cause of their heart condition and other genetic traits.

Regenerative Medicine Our team is also leading studies exploring new treatments for children with heart failure through stem cells and tissue engineering. We are evaluating the use of stem cells to help rebuild muscle and blood vessels in failing hearts, including identifying and purifying stem cell tissue with especially potent regenerative properties, and establishing optimal techniques for delivery of the stem cell tissue to optimize the regeneration of failing hearts.

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C.S. Mott Children’s Hospital

www.mottchildren.org/congenital

Educational Programs The C.S. Mott Children’s Hospital Congenital Heart Center provides comprehensive educational services to train the next generation of leaders in pediatric cardiology and congenital heart surgery, and to share information on the latest advances in pediatric cardiac care with colleagues, patients, and families

Partners in Pediatric Care

Fellowship Programs

Young ICD Connection Conference

We offer world-class fellowship training programs in pediatric cardiology and congenital heart surgery. Our three-year pediatric cardiology fellowship program provides comprehensive pediatric cardiovascular clinical and research training and typically accepts six fellows annually.

In addition, there are advanced fourth year fellowships available across subspecialty areas. Our congenital heart surgery fellowship trains two fellows each year.

Established in 1995, this annual conference provides support, education, and social interaction for ICD recipients of all ages and their families.

Held annually, this interactive conference provides an update for pediatric practitioners across the region on general and subspecialty pediatric topics, including the care of children with congenital heart disease, and aims to foster better integration of acute and chronic pediatric care.

Transparency Summit In collaboration with the Pediatric Congenital Heart Association, we will be hosting a Transparency Summit in 2017 geared toward optimizing transparent reporting of congenital heart center outcomes.

Joint Conference on Advances in Pediatric Cardiovascular Disease Management This annual conference brings physicians, nurses, and trainees from across the country together to learn about cuttingedge technologies and the latest advances in pediatric cardiovascular care. The next conference will be held in September 2017 in Ann Arbor, MI, sponsored by C.S. Mott Children’s Hospital in collaboration with the Children’s Hospital Los Angeles and Children’s Healthcare of Atlanta.

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Executive Officers of the University of Michigan Health System Marschall S. Runge, M.D., Ph.D. Executive Vice President for Medical Affairs, U-M Medical Affairs Dean, U-M Medical School David A. Spahlinger, M.D. Executive Vice Dean of Clinical Affairs, President, Clinical Enterprise Patricia D. Hurn, Ph.D., R.N. Dean, School of Nursing

The Regents of the University of Michigan Michael J. Behm Mark J. Bernstein Laurence B. Deitch Shauna Ryder Diggs Denise Ilitch Andrea Fischer Newman Andrew C. Richner Katherine E. White Mark S. Schlissel, ex officio

The University of Michigan, as an equal opportunity/affirmative action employer, complies with all applicable federal and state laws regarding nondiscrimination and affirmative action. The University of Michigan is committed to a policy of equal opportunity for all persons and does not discriminate on the basis of race, color, national origin, age, marital status, sex, sexual orientation, gender identity, gender expression, disability, religion, height, weight, or veteran status in employment, educational programs and activities, and admissions. Inquiries or complaints may be addressed to the Senior Director for Institutional Equity, and Title IX/Section 504/ADA Coordinator, Office for Institutional Equity, 2072 Administrative Services Building, Ann Arbor, Michigan 48109-1432, 734-763-0235, TTY 734-647-1388, institutional.equity@umich.edu. For other University of Michigan information call 734-764-1817. Š 2016 Regents of the University of Michigan.

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1540 E. Hospital Drive, 11th Floor | Ann Arbor, MI 48109 To make a referral or speak with one of our specialists, contact M-LINE 24 hours a day, 7 days a week.

M-LINE 800-962-3555 www.mottchildren.org/congenital