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CDC Site Visit at Emory CHD Surveillance Cooperative Agreement Clinical & Case Finding September 25, 2013 Wendy Book, MD. Organizational Schema. Sibley Heart Center William Mahle, MD. Principal Investigator Wendy Book, MPH Co-Investigators William Mahle, MD Brian Hogan, MD

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Organizational schema

CDC Site Visit at EmoryCHD Surveillance Cooperative AgreementClinical & Case FindingSeptember 25, 2013Wendy Book, MD

Organizational schema

Organizational Schema

Sibley Heart Center

William Mahle, MD

Principal Investigator

Wendy Book, MPH


William Mahle, MD

Brian Hogan, MD

Carol Hogue, PhD, MPH

Maan Jokhadar, PhD

Michael Kramer, PhD, MPH

Cheryl Raskind-Hood, MS, MPH



Children’s Healthcare of Atlanta

Brian Kogan, MD

Emory Bioinformatics

Lisa Codgill

Jeff Weaver

Kenyon Register

Andreas Kalogeropoulos

Emory University Hospital

Wendy Book, MD

Anita Saraf, MD, PhD

Emory University Hospital Midtown

William Mahle, MD

Emory University

Rollins School of Public Health

Carol Hogue, PhD, MPH

Michael Kramer, PhD

Cheryl Raskind-Hood, MS, MPH

Grady Memorial Hospital

Allen Dollar, MD

Neils Engberding, MD

Emory St. Joseph’s Hospital

Mann Jokhadar, MD

Pediatric Cardiology Services

Neill Videlefsky, MD


Metro Atlanta Congenital Defect Program

Georgia Department of Health

Goals of rfa dd12 1207

Goals of RFA dd12-1207

  • Determine the prevalence of CHDs among a population-based sample of adolescents and adults in the U.S.;

  • Describe the health care utilization and direct medical care costs for adolescents and adults with CHDs;

  • Describe the distribution of disease severity, co-morbidities, and longer term outcomes of adolescents and adults with CHDs;

  • Describe any racial/ethnic or socioeconomic disparities in healthcare use or long-term outcomes;

  • Monitor the health outcomes in special populations such as pregnant women with CHDs;

  • Calculate the survival and life expectancy for persons with specific types of CHDs;

  • Describe the availability of specialty care and referral patterns that are currently in place;

  • Assist with public health planning.

Congenital heart public health consortium 2012

Congenital Heart Public Health Consortium (2012)

“Because there is no population-based surveillance of CHD across the lifespan in the United States, no prevalence data are available on children, adolescents, and adults living with CHD.”

Adult children living with chd prevalence across the lifespan

Adult & Children Living with CHD: Prevalence Across the Lifespan

2000 (U.S.) Estimates

  • 800,000 adults

  • 600,000 children

    2010 (extrapolation based on Canadian data) to U.S. Census data in 2010

  • 2 million people (all ages) were possibly living with CHD in the United States, approximately:

    • 975,000 to 1.4 million children

    • 959,000 and 1.5 million adults.

Note. Data from Congenital Heart Public Health Consortium, 2012.

What s different about georgia

What’s different about Georgia?

  • Georgia > 3% U.S. population

  • Atlanta metro area has grown significantly since 1960’s - now represents > 1% of the U.S. population

  • However, same training structure remains – one major medical school in Atlanta, one major CTS training program, one major cardiology program

  • NY & MA - multiple programs

Note. Data from U.S. Census 2010

Metropolitan atlanta congenital defects program macdp

Metropolitan Atlanta Congenital Defects Program (MACDP)

  • Established 1967 by CDC, Emory University and GMHI

  • Covers a 5-county metropolitan Atlanta

Population of about 2.9 million,

with 51,600 annual births

Five county demographics by age race ethnicity chd

Five-County Demographics by Age, Race, Ethnicity & CHD

Racial distribution for chd consortium sites

Racial Distribution for CHD Consortium Sites

Provisions of outpatient pediatric chd care

Provisions of Outpatient Pediatric CHD Care


  • CHOA outpatient, a.k.a. Sibley Heart Center, has44 cardiologists at 19 offices

  • Pediatric Cardiology Services: 4 cardiologists

  • 4 other pediatric cardiologists

    • Lower CHD capture

  • Medical College of Georgia (Augusta)

    • 6 pediatric cardiologists

Provisions of outpatient pediatric chd care1

Provisions of Outpatient Pediatric CHD Care



Medical College

of Georgia

I npatient pediatric care in georgia

Inpatient Pediatric Care in Georgia

  • Children’s Healthcare of Atlanta (3 hospitals)

    • >85% of care in state, majority of all care in metro Atlanta

  • No other children’s hospital in metro Atlanta

  • One other provider of inpatient pediatric care

    • Medical College of Georgia (Augusta)

Choa cardiac surgical volume by age

CHOA: Cardiac Surgical Volume by Age

How many chd surgeries conducted in augusta

How Many CHD Surgeries Conducted in Augusta?

Pediatric cardiac surgical volume by site 2008 2010

Pediatric*Cardiac Surgical Volume by Site2008-2010

* up to age 21

** Medical College of Georgia

*** Children’s Healthcare of Atlanta

Adult congenital heart care in georgia

Adult Congenital Heart Care in Georgia

  • One Adult Congenital Heart Center in Georgia – Emory Healthcare (Emory HC)

  • Emory HC network is largest provider of cardiac care in Georgia

  • Model for transition

    • No patients >21 yrs. followed in the pediatric program

Other providers of adult chd care

Other Providers of Adult CHD Care

  • Emory Healthcare includes St. Joseph’s

  • Grady Health and Grady Memorial Hospital (GMH) - more than 36,000 cardiology visits annually

  • Numerous private practices

    • Referral pattern for Adult CHD care is to Emory

Emory cardiac surgical volume adult

Emory Cardiac Surgical Volume (Adult)

Overview of emory healthcare

Overview of Emory Healthcare

Overview of emory healthcare1

Overview of Emory Healthcare

Emory adult congenital heart center visit numbers

Emory Adult Congenital Heart CenterVisit Numbers

EHC Visits

  • EHC system sees 1.5 million visits per year

  • Nearly 250,000 unique new patients each year

  • EHC provides 170,000 cardiology visits per year

Age distribution achd clinic

Age Distribution, ACHD Clinic

# patients

Data sources

Data Sources

  • Metropolitan Atlanta Congenital Defects Program (MACDP)

    • Linked with National Death Index (NDI)

  • Children’s Healthcare of Atlanta (CHOA)

  • Sibley Heart Center (Sibley)

  • Pediatric Cardiology Services (PCS)

  • Emory Healthcare (EHC)

  • Grady Health & Grady Memorial (GMH)

  • CMS Medicaid Data

  • Georgia Vital Records

Data sources 2008 2010

Data Sources 2008-2010

  • Emory Healthcare – clinical electronic medical (eMR) records (current started 2009) and archived data available (2008)

  • Grady Health – clinical electronic records (current started 2011) and archived electronic records (2008-2010 available)

  • Sibley – Current and archived data available

  • Pediatric Cardiology Services - electronic records

  • CMS Medicaid (Children’s Medical Service – previously CCS - program provided care for CHD patients up until age 21 in a Medicaid expansion program. This data was not reported to CMS. Program ended 2009)

  • MACDP with NDI – NDI linkage currently being revisited

  • GA Vital Records (Death Certificates) – provided by GA Dept. of Public Health and maintained at CDC

Georgia population density counties

Georgia Population Density & Counties

Georgia Population Density

Clinical Surveillance Counties

Pregnancy plan

Pregnancy Plan

  • Patient will be identified through billing codes for cardiac disease in pregnancy, cross-referenced with codes for CHD

  • Existing pregnancy data can be de-identified and shared, but referral bias due to clinical research set at tertiary center

  • Maternal mortality review (Georgia)

Surgeries procedures other studies

Surgeries, Procedures & Other Studies

  • Procedures – “less invasive” repairs, typically done in the cath lab in cardiology

  • Diagnostic Cath

  • Imaging studies (MRI, CT, Echo)

  • EKG

  • Map to CPT/ICD9 codes, use STS grouping?

U ninsured medicaid patient numbers

Uninsured & MedicaidPatient Numbers

  • EHC

  • Sibley/CHOA Adolescent 11-21 years

  • Grady Health

  • Overall 4% uninsured, 5% Medicaid overall

  • ACHD 8% uninsured, 11% Medicaid

  • <5% uninsured

  • 47% Medicaid

  • 53% Uninsured

  • 14% Medicaid

Data progress to date

Data: Progress to Date

  • Data acquired from Sibley, CHOA, EHC data warehouse

  • Archived EHC data received, being reviewed

  • IRB protocol submitted, approval is pending final DUA approvals

  • DUA approval required for Grady Health data

  • Meeting held with Pediatric Cardiology Services, expect data in next month

Challenge 1 out of care

Challenge #1: “Out of Care”

  • In the “Natural History Study”, 40% of patients with AS/PS/VSD had not had a cardiac examination in over 10 years.1

  • Of 10,500 adults with congenital heart disease in Germany, 8,028 were lost to follow up for more than 5 years.2

  • Second natural history study of congenital heart defectsCirculation 1993

  • Wacker A. Outcomes of operated and unoperated adults with congenital cardiac disease lost to follow up for more than five years. Am J Cardiol2005.

Canadian experience


Of adults with congenital heart disease transitioning to level 3 care, >25% had not had a single evaluation after their 18th birthday.

Reid. Prevalence and Correlates of Successful Transfer From Pediatric to Adult Health Care Among a Cohort of Young Adults With Complex Congenital Heart Defects Pediatrics 2004

Gaps in care heart achd project

Gaps in Care: HEART-ACHD Project

  • 922 subjects from 12 ACHD centers.

  • A >3 year lapse in care identified in 42% (25% w/ severe)

  • 8% having lapses >10 years.

  • Mean age at first lapse was 19.9 years

  • Subjects were highly educated with 73% having more than high school education.

Gurvitz M, Valente A, et al. Prevalence and predictors of gaps in care. J Am CollCardiol. 2013 May 28;61(21):2180-4

Challenge 2 uninsured

Challenge #2: Uninsured

National Inpatient Hospital Database (1998-2004 & 2004-2010)

  • 60% of persons between 2004-2010 had public insurance or were uninsured (O'Leary, Siddiqi, de Ferranti, Landzberg, & Opotowsky, 2013) 

  • ? accessibility of medical care to patients with public insurance or those who are uninsured

  • ? increasing utilization of hospital care

Self care trends in achd

Self-Care Trends in ACHD

  • Between 40-60% of adultsare not engaged in routine care

  • up to 85% do not meet physical activity recommendations

    Dua, Cooper, Fox, & Graham Stuart, 2007

  • At least 20% of women do not attend pre-pregnancy counseling despite high rates of maternal and fetal complications

Bowater et al., 2012

Drenthenet al., 2007

Gurvitz, M., Verstappen, A., Valente, A.M, Broberg, C., Cook, S., Stout, K., Kay, J., Ting, J., Kuehl, K., Earing, M., Webb, G., Opotowsky, A., Graham, D., Khairy, P., Landzberg, M., 2011

Challenge 3 icd 9cm codes for case definitions

Challenge #3: ICD-9CM Codes for Case Definitions

  • Misuse of codes

  • 745.5 codes for ASD and for normal variant PFO (roughly 25-30% of population)

  • In adults, PFO often picked up incidentally on echo for other indications

  • 745.4 codes for VSD. Post-myocardial infarction VSD may also be under this code (1% of fatal MI)

    • 552K MI fatalities per year in U.S.

    • MI 208 per 100,000 in 2008

Blue babies

Blue Babies

The problem where are they now

The Problem: Where Are They Now??

I am 745.10

Transposition of great vessels mustard or senning palliation

Transposition of Great Vessels:Mustard or Senning Palliation

WeltonM. Gersony, CHD

This is what 745 10 might look like in an administrative database

This is What 745.10 Might Look Like in an Administrative Database

1969: Balloon septostomy for dTGA

1973: “Mustard” procedure, atrial switch (no code)

1990: Hospitalization: Sick sinus syndrome (427.81), Pacemaker placed (33206)

1994: Hospitalization: Heart Failure (428.0)

1999: Pregnancy complicated by heart failure (648.5)

2003: Atrial flutter (427.32)

2009: Sudden Death, Death Certificate: (I46.2)

How do we group chds

How Do We Group CHDs?

  • 3 categories – Minor, Major, CHD with co-morbidities

  • Healthcare Utilization

    • By Age

    • By Severity

  • Suggestions: group by utilization & co-morbidities instead

Status of project administration accomplishments to date

Status of Project Administration: Accomplishments To-Date

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