CDC Site Visit at EmoryCHD Surveillance

Cooperative Agreement

Clinical & Case Finding

September 25, 2013

Wendy Book, MD

Sibley Heart Center William Mahle, MD

Organizational Schema

Children’s Healthcare of AtlantaBrian Kogan, MD

Emory University HospitalWendy Book, MD

Anita Saraf, MD, PhD

Emory University Hospital MidtownWilliam Mahle, MD

Grady Memorial HospitalAllen Dollar, MD

Neils Engberding, MD

Emory St. Joseph’s HospitalMann Jokhadar, MD

Pediatric Cardiology ServicesNeill Videlefsky, MD

Emory BioinformaticsLisa CodgillJeff Weaver

Kenyon RegisterAndreas Kalogeropoulos

SurveillanceDatabase

Metro Atlanta Congenital Defect Program Georgia Department of Health

PopulationDatabase

Emory University Rollins School of Public Health

Carol Hogue, PhD, MPHMichael Kramer, PhD

Cheryl Raskind-Hood, MS, MPH

Principal InvestigatorWendy Book, MPH

Co-InvestigatorsWilliam Mahle, MD

Brian Hogan, MDCarol Hogue, PhD, MPH

Maan Jokhadar, PhDMichael Kramer, PhD, MPH

Cheryl Raskind-Hood, MS, MPH

Goals of RFA dd12-1207

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

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

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

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

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

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

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

8. Assist with public health planning.

“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.”

Congenital Heart Public Health Consortium (2012)

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?

• 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)

• 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

5-County Estimated EstimatedPopulation N in 2010 CHDs

10 to 14 229,857 172415 to 19 232,249 174220 to 24 228,010 171025 to 34 526,398 394735 to 44 536,979 377545 to 54 470,871 331155 to 59 180,543 126960 to 64 136,170 828

Total 2,541,077 18,306

White 48.5% HispanicBlack 39.6% 11.9%AI/NA 0.6%Asian 6.7% non-HispanicHI/PI 0.1% 88.1%

Some Otr 6.2%

Racial Distribution for CHD Consortium Sites

CaucasianAfrican-

American Asian

Georgia 62.8% 31.2% 3.5%

Massachusetts 83.7% 7.9% 5.8%

New York 71.2% 17.5% 8.0%

U.S. 77.9% 13.1% 5.1%

Provisions of Outpatient Pediatric CHD Care

Outpatient– CHOA outpatient, a.k.a. Sibley Heart Center,

has 44 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 Care

Augusta

Atlanta

Medical College of 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

How Many CHD Surgeries Conducted in Augusta?

Pediatric Adult Total2008 22 0 222009 102 7 1092010 118 3 121

Pediatric* Cardiac Surgical Volume by Site

2008-2010

* up to age 21** Medical College of Georgia*** Children’s Healthcare of Atlanta

Site # (%)MCG** 242 (8.6%)CHOA*** 2545 (91.4%)

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

• 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)

Hospital 2008 2009 2010

Emory University Hospitals – Midtown 1052 1003 884

Emory University Hospital 790 867 759Wellstar Kennestone Hospital 565 527 635Athens Regional Hospital 180 300 352

Total 2587 2697 2630

Overview of Emory Healthcare

Overview of Emory Healthcare

FY 2008 FY 2009 FY 2010 FY 2011 FY 2012FY2013

AnnualizedNEW PATIENT

VISITS 199 326 276 284 290 338

PROCEDURES 476 682 672 842 922 1,199

RETURN PATIENT VISITS 864 1,042 1,182 1,558 1,710 1,875

GRAND TOTAL 1,539 2,050 2,130 2,684 2,922 3,412

• 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

Emory Adult Congenital Heart CenterVisit Numbers

EHC Visits

10 to 19

20 to 29

30 to 39

40 to 49

50 to 59

60 to 69

70+0

200

400

600

800

1000

1200

FemaleMale Total

# p

atie

nts

Age Distribution, ACHD Clinic

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

• 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 Clinical Surveillance Counties

Georgia Population Density & Counties

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

• 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?

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 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

1. Second natural history study of congenital heart defects Circulation 1993

2. Wacker A. Outcomes of operated and unoperated adults with congenital cardiac disease lost to follow up for more than five years. Am J Cardiol 2005.

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

Canadian Experience

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

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

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 Coll Cardiol. 2013 May 28;61(21):2180-4

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

• Between 40-60% of adults are 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

Drenthen et 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

• 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

The Problem: Where Are They Now??

I am 745.10

Transposition of Great Vessels:Mustard or Senning Palliation

Welton M. Gersony, CHD

1969: Balloon septostomy for dTGA1973: “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)

This is What 745.10 Might Look Like in an Administrative Database

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

Collaboration• Weekly meetings since Fall 2012• Team - Emory Congenital Heart Center &

Rollins School of Public Health

Project Staffing

• 1 Biostatistician (for Y3)• 1.5 Project Manager (prev. 2.2 PMs)• 3 MPH Graduate students – knowledgeable

in CHD terminology, trained by in-house physicians

Contracts & Validation

• IRB Approval - for Data Collection & Data Sharing

• DUA In Progress - Pediatric Cardiology Services

• DUA Completed – Grady Health, CHOA, & St. Joseph’s Hospital

• ResDAC- Submitted & currently under review• LexisNexis Approval