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
Children’s Healthcare of Atlanta
Brian Kogan, MD
Emory University Hospital
Wendy Book, MD
Anita Saraf, MD, PhD
Emory University Hospital Midtown
William Mahle, MD
Principal Investigator
Surveillance
Database
Emory Bioinformatics
Lisa Codgill
Jeff Weaver
Kenyon Register
Andreas Kalogeropoulos
Grady Memorial Hospital
Allen Dollar, MD
Neils Engberding, MD
Wendy Book, MPH
Co-Investigators
William Mahle, MD
Brian Hogan, MD
Carol Hogue, PhD, MPH
Maan Jokhadar, PhD
Michael Kramer, PhD, MPH
Cheryl Raskind-Hood, MS, MPH
Emory University
Rollins School of Public Health
Carol Hogue, PhD, MPH
Michael Kramer, PhD
Cheryl Raskind-Hood, MS, MPH
Emory St. Joseph’s Hospital
Mann Jokhadar, MD
Pediatric Cardiology Services
Neill Videlefsky, MD
Population
Database
Metro Atlanta Congenital Defect Program
Georgia Department of Health
Goals of RFA dd12-1207
1.
Determine the prevalence of CHDs among a populationbased 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.
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
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
Population
10
15
20
25
35
45
55
60
to
to
to
to
to
to
to
to
14
19
24
34
44
54
59
64
Total
White
Black
AI/NA
Asian
HI/PI
Some Otr
Estimated
N in 2010
Estimated
CHDs
229,857
232,249
228,010
526,398
536,979
470,871
180,543
136,170
1724
1742
1710
3947
3775
3311
1269
828
2,541,077
18,306
48.5%
Hispanic
39.6%
11.9%
0.6%
6.7% non-Hispanic
0.1%
88.1%
6.2%
Racial Distribution
for CHD Consortium Sites
Caucasian
AfricanAmerican
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
Medical College
of Georgia
Atlanta
Augusta
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?
2008
2009
2010
Pediatric Adult
22
0
102
7
118
3
Total
22
109
121
Pediatric*
Cardiac Surgical Volume by Site
2008-2010
Site
MCG**
CHOA***
* up to age 21
** Medical College of Georgia
*** Children’s Healthcare of Atlanta
# (%)
242 (8.6%)
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
759
Wellstar Kennestone Hospital
565
527
635
Athens Regional Hospital
180
300
352
2587
2697
2630
Total
OverviewOverview
of Emory
Healthcare
of Emory Healthcare
Emory University
Hospital Midtown
Emory University
Hospital
The Emory Clinic &
Emory Clark-Holder
Clinic
Cardiac Rehabilitation
Wesley Woods Geriatric
Teaching and Research
Hospital
Heart Centers
Heart Center at Emory Johns Creek
Heart Center at Hiawassee
Heart Center at Middle Georgia
Heart Center at Cartersville
Heart Center at Kennestone
Heart Center at Columbus
Heart Center at Murphy
Heart Center at Decatur
Heart Center at Perimeter
Heart Center at Duluth
Heart Center at Rockdale
Heart Center at Eastside
Heart Center at Royston
Heart Center at Habersham
Heart Center at Smyrna
Heart Center at Hartwell
Heart Center at Toccoa
Heart Center at Hillandale
Heart Center at Villa Rica
Emory-Georgia Heart Care
Emory University
Orthopaedics & Spine
Hospital
Emory-Children's Center
Emory HealthCare
Emory Johns Creek
Telehealth Centers
36 locations around Georgia state
Primary Care Centers
The Emory Clinic at Decatur
The Emory Clinic at Flat Shoal
The Emory Clinic at WellStar Kennestone in Marietta
The Emory Clinic at Perimeter
The Emory Clinic at Smyrna
The Emory Clinic at Sugarloaf
Wesley Woods Outpatient Clinic
Emory Family Medicine Center at Dunwoody
Emory at Eagles Landing
Overview of Emory Healthcare
EHC Visits
Emory Adult Congenital Heart Center
Visit Numbers
FY 2008
FY2013
FY 2009 FY 2010 FY 2011 FY 2012 Annualized
NEW 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
1,539
2,050
2,130
2,684
2,922
3,412
GRAND TOTAL
•
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
1200
# patients
1000
800
Female
600
Male
400
Total
200
0
10 to
19
20 to
29
30 to
39
40 to
49
50 to
59
60 to
69
70+
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
& Counties
Georgia Population Density
Clinical Surveillance 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 deidentified 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 & Medicaid
Patient Numbers
• EHC
• Overall 4% uninsured, 5% Medicaid overall
• ACHD 8% uninsured, 11% Medicaid
• Sibley/CHOA Adolescent 11-21 years
• <5% uninsured
• 47% Medicaid
• Grady Health
• 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
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
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.
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
• 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 prepregnancy 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
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?
• 3 categories – Minor, Major, CHD with
co-morbidities
• Healthcare Utilization
– By Age
– By Severity
• Suggestions: group by utilization & comorbidities instead
Status of Project Administration:
Accomplishments To-Date
Collaboration
Project
Staffing
Contracts &
Validation
• Weekly meetings since Fall 2012
• Team - Emory Congenital Heart Center & Rollins
School of Public Health
• 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
• 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