Utah Adult Congenital Heart Disease Program. Arvind Hoskoppal, M.D. 1/14/17

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1 Utah Adult Congenital Heart Disease Program Arvind Hoskoppal, M.D. 1/14/17

2 Background Prevalence: ~ 1% Over 1 million of adults in the US have congenital heart disease Some lesions don t present until later in life Patients with repaired defects are living longer Many patients are not regularly followed by an adult congenital heart disease specialist

3 November 29, 1944 The Original Blalock-Taussig Shunt

4 Children s Special Needs 1751 Pennsylvania Hospital founded 1855 Children s Hospital of Pennsylvania

5 CHD in the US Current US population ~ 316 M More than 1 M adults with CHD in the US Number of affected adults now exceeds the number of children affected.

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7 CHD in Utah 2013 Utah population 2.9 M total with ~ 2M adults Estimate ~ 8000 adults with CHD in Utah Many lost to medical follow up Surrounding states

8 Never Fixed!

9 Cardiologists Utah ACHD Program Arvind Hoskoppal, Dan Cox and Kevin Whitehead CT Surgery John Doty, Rusty Eckhauser, Phillip Burch, Eric Griffiths, Craig Selzman Nurse Practitioner Electrophysiology, interventional cardiology, heart failure/transplant

10 Patient care What We Do Multidisciplinary team meetings for complex CHD patients Pregnancy and heart disease Aortic disorders including Marfan syndrome Education Research PHN: Core site CDC: One in 5 centers to be funded nationally

11 Where Are Our Adult Congenital Patients Being Seen? Division of Pediatric Cardiology: Patients 21 years and older PCH 545 Riverton 210 IMC 106 Dixie Regional 67 McKay Dee 33 UUMC 20

12 Who Is Seeing Our Adult Clinic Patients? Division of Pediatric Cardiology Patients 21 years and older: At PCH and Outreach ACHD Providers: 458 visits Non-ACHD Providers: 510 visits

13 2013 PCH Summary Pts 21 years > 21 yrs Total Volume % PCH VOLUMES % Event Monitors % Device Implants % Clinic Device Checks % Remote Device Checks % MRI % Exercise Tests % Echo % Holter Monitors % Outpatient Clinic % EPS/Ablation % Total Cath Lab Cases % Interventional Cath Cases %

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15 Personnel and Services for Regional ACHD Center ACHD cardiologists Congenital electrophysiologists Dedicated RN, NP, PA Imaging Echo, MRI, CT, Nuclear Med Exercise Testing Echo, Metabolic, Radionuclide, Cardiopulmonary

16 Personnel and Services for Regional ACHD Center Cardiac Cath Diagnostic Interventional (non-coronary and coronary) Congenital cardiac surgeons Non-cardiac surgeons Cardiac anesthesia OR Team, Equipment, Supplies Intensivists and Hospitalists Skilled nursing and allied staff

17 Personnel and Services for Regional ACHD Center ADULT Heart Failure Mechanical Support GI and Hepatology Heart and Liver Transplant Obstetrics & Gynecology Pulmonology Nephrology Endocrinology Neurology Mental Health Services Palliative and Hospice Care Rehab Services Social Services Vocational Services Financial Counselors

18 Personnel and Services for Regional ACHD Center Data systems Database support Quality measures Ties to national organizations

19 - With Vision and Direction - An Opportunity For Excellence To move forward, we need to know: What s needed? Available resources? How we bridge the gap?

20 A Single, Coordinated Program PCH Regional Providers Regional Facilities UUMC IMC Centered Around Patient Needs

21 Opportunities 1. Large number of ACHD patients, many lost to follow up 2. Vast opportunities for research and collaboration 3. No other formal ACHD program in surrounding states (MT, ID, NV, WY, AK and northern AZ) 4. Opportunity to build a nationally recognized ACHD program

22 Vision for future Accreditation Transition program Marketing and education New physician extender Biplane cardiac cath lab

23 Accreditation Adult Congenital Heart Association Directory of accredited programs: national and international recognition Preliminary application accepted Full application to be submitted Site visit

24 What is Transition? Why do it? Transition Transfer Transfer: event vs Transition: process Shift in the responsibility of healthcare management from the family to the patient Minimize patients being lost to follow up

25 ULTIMATE GOAL OF TRANSITION Optimize quality of life Life expectancy Future productivity 30% of adults aged yrs lack a payment source for their health care (National Center for Medical Home Implementation Website) Sable C, Circ 2011

26 Preliminary Steps: Resource Identification Care Team Time and Space Finances Other subspecialists Media

27 Preliminary Steps Consult with relevant external sources Been in communication with other programs Site visit planned in spring 2017 Commitment from administration Support from pediatric cardiology and adult cardiology chiefs

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