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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