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CDC Site Visit at Emory CHD Surveillance Cooperative Agreement Prevalence Estimates September 25, 2013 Carol Hogue, PhD, MPH Cheryl Raskind-Hood, MS, MPH. Overview of General Prevalence Estimates. 5 counties* within Metropolitan Atlanta Population in 2010, ages 18 – 64: ~ 3 million**

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Overview of General Prevalence Estimates

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CDC Site Visit at EmoryCHD Surveillance Cooperative Agreement Prevalence EstimatesSeptember 25, 2013Carol Hogue, PhD, MPHCheryl Raskind-Hood, MS, MPH


Overview of General Prevalence Estimates

  • 5 counties* within Metropolitan Atlanta

    • Population in 2010, ages 18 – 64: ~ 3 million**

    • 51% non-Hispanic White, 40% non-Hispanic Black

    • Living in same house > 1 year ~ 80%

  • Resident who meets case definition with at least one encounter , 2008-2010

    • Hospital

    • Outpatient clinic

    • Medicaid (ResDAC)

  • Presumed alive on January 1, 2010 and in age range (11-64)

    • GA Vital Records (Mortality 2008 – 2010)

* The five counties are within the Metropolitan Atlanta area and include Fulton, Cobb, Dekalb, Gwinnett, & Clayton.

** U.S. Census 2010.


Map of Five Counties


Planned Strategy1: Population-Based Estimate MACDP Not Linked to Data Sources includes GA Vital Records


Data Sources for Population-based Prevalence

  • Hospitals and Clinics Included

    • Emory Healthcare: Emory HC (EHC)

    • Children’s Healthcare of Atlanta: CHOA

    • Sibley Heart Center: Sibley

    • Grady Health

    • Selected private providers:

      • Pediatric Cardiology Services (PCS)

  • To-date: Deduplicated CHOA & Sibley (2008-2010)

    • Merged by Last Name, First Name, DOB, Sex & County

    • Retained all CHD Dx Codes

    • ~4700 after adolescent merge

    • Few county differences

      • Use of LexisNexis for validation


Variables Used to Link Various Data Sources

* May receive SSN to Bene_ID crosswalk from ResDAC


Linkage for Population-based CHD Adolescents & Adults

Step 1.

Link GA death records to sources to determine survivors. Deduplicate.

DATA SOURCES

Step 2.

Create datasets & identify survivors & non-survivors.

Step 4.

Upload limited dataset to CDC via SAMS.

Step 3.

Create limited datasets with specific core vars & PHI removed.

Emory HC

2008-2010

Adult

CHD Dataset

Grady Health

2008-2010

Adolescent& Adult CHD Datasets

Adolescent& Adult CHD Datasets

ResDAC

2008-2009

Adolescent& Adult CHD Datasets

GA Death

Records

2008-2010

Adolescent

CHD Dataset

CHOA

2008-2018

Sibley

2008-2018

Constrain to specific vars and remove PHI

Select Private Providers

2008-2018


Deduplicating & Matching Protocol

  • Sibley

  • CHOA

  • Emory Clinics*

  • Emory Hospitals

  • Medicaid (ResDAC)

  • Others as Available

Used as example for all datasets

* Including archived Heart Failure database at Emory HC.


Flowchart: Deduplicating

Adolescent EHC Clinic Datasets

CHOA 2

SIBLEY

CHOA 1

Sibley extracted Name, DOB, Gender & CHD ICD-9s for 2008-2010

CHOA extracted Name, DOB, Gender & CHD ICD-9s for 5/1/2009-12/31/2010

Sibley extracted Name, DOB, Gender & CHD ICD-9s for 2008-2010

CHOA extracted Name, DOB, Gender & CHD ICD-9s for 1/1/2008-4/30/2009

Concatenated multiple rows into a single row for each patient

Concatenated multiple rows into a single row for each patient

Cross-walked

county in by zip;

Concatenated multiple rows into a single row for each patient

De-duplicate patients

De-duplicate patients

Deduplicated patients

Merge & de-duplicate both datasets

Merge &

de-duplicate patients


Five-county EstimatesPossible Over-estimate Because:

  • Multiple data sources may not be completely deduplicated

  • Name changes

  • Inaccurate county of residence coded (e.g., Grady free clinics serve only Fulton & DeKalb residents)

  • Imprecision of some ICD-9CM codes / diagnoses


Five-county EstimatesPossible Under-estimate Because:

  • Persons living with CHDs may not access the healthcare system in time frame (2008-2010) (clinical data supports this)

    • You would think that

      • those with mild to moderate CHD defects would be less likely to access care, BUT not so

      • Those with unsuccessful surgeries would be less likely to access care, BUT according to clinical data, the complex severe defects are equally at risk (25%)

  • Imprecision of some ICD9-CM codes / diagnoses

  • Missing the uninsured


Population-based Estimate

Adolescent & Adult CHD in Five-Counties:

Issues and Limitations

  • Not an issue -> Moved out of state before 2008

  • Data errors leading to non-match, e.g., incomplete dates, misspelled names, changed names (less an issue if MACDP is included in matching process)

  • Didn’t seek care in Georgia during 2008-2010

  • Received care outside of data sources


Should We Add 41 Counties?


Map of 46 counties

Atlanta

Augusta


Should We Add 41 Counties?

  • Arguments in favor of including them

    • Additional data collection effort is minimal

    • Clinical Penetration in these counties are high for our Network Consortium

    • Healthcare settings for the 5-county area also serve the vast majority of the 46-county area

    • ResDAC will be reported for all of Georgia

    • Population of rural and semi-urban areas in the South may have different CHD prevalence (e.g., because of migration closer to care)

    • Different demographics for urban vs. rural outside and inside metro Atlanta limits


Should We Add 41 Counties?

  • Arguments against including them

    • 46-county prevalence estimates will be more affected by missing cases that are seen outside of Georgia

      • ResDAC only for GA – GA residents can’t go out of state (out-of-pocket cost)

      • Some specialized care in border areas in Alabama, Florida, and South Carolina


And the Answer Is. . . .?


Yes


Planned Strategy2:MACDP-based EstimateLink MACDP to Data Sources includes NDI & GA Vital Records


Relationship of Presumed MACDP Survivors to Clinical & Medicaid Datasets

Presumed ALIVE,

But NOT Found in Lexis/Nexis

MEDICAID

2008-2009

Seen in MCAID

within 5 counties

Seen in clinics & MCAID

& living within 5 counties

Seen in MCAID

but living outside the 5 counties

Seen in clinics & living within 5 counties

Seen in clinics & MCAID

but living outside 5 counties

Seen in clinics

but living outside

5 counties

CLINICS

2008-2010

Note. Encounters occurred between 2008-2010 for EHC & between 2008-2009 for Medicaid; 2010 Medicaid data available soon.


Summary of Data Sources


Flowchart: To Obtain Dataset for

Presumed MACDP Survivors

(To be completed by CDC contractors?)

Original

MACDP Dataset

YES

FOUND IN

GA DC ?

Remove from MACDP Survivors

NO

YES

Remove from MACDP Survivors

FOUND IN NDI ?

NO

PRESUMED SURVIVORS


FLOWCHART: Bringing Merged Sibley & CHOA Adolescent Dataset into CDC

for MACDP MATCHING

Emory HC Deduplicated Dataset

MACDP

1967-1999

Add to repository matched file

& deduplicate

Exact Match

With Last Name, First Name, DOB, & Gender

YES

NO

Add to repository matched file

& deduplicate

Matches with Additional

Approaches *

YES

NO

Residual MACDP temporary file

* Protocol for additional matching approaches to be discussed with CDC & consortium partners.


Linkage with MACDP:

CHD Adolescents & Adults

Step 1.

Link MACDP with GA death records & NDI to determine survivors. Merge with adult & adolescent sources. Deduplicate.

Step 2.

Create datasets & identify survivors & non-survivors.

Step 4.

Upload limited dataset to CDC via SAMS.

Step 3.

Create limited datasets with specific core vars & PHI removed.

DATA SOURCES

Emory HC

2008-2010

Grady Health

2008-2010

ResDAC

2008-2009

Linked MACDP Adult

CHD Dataset

Adolescent& Adult CHD Datasets

Adolescent& Adult CHD Datasets

MACDP

with or

without NDI

Adolescent& Adult CHD Datasets

CHOA

2008-2018

Linked MACDP Adolescent

CHD Dataset

Sibley

2008-2018

Select Private Providers

2008-2018

Constrain to specific vars and remove PHI

  • Remove PHI from MACDP not found in other sources.

GA Death

Records

2008-2010


Assumptions & Issues of

MACDP Matching Process:

Multiple Reasons for Lack of Matching

  • Moved out of state before 2008

  • Data errors leading to non-match, e.g., incomplete dates, misspelled names, changed names

  • Didn’t seek care in Georgia during 2008-2010

  • Received care outside of data sources

  • Underestimate number of uninsured patients who may have sought care elsewhere

    • Fulton & DeKalb covered through Grady Health

    • Emory HC does not turn anyone away

Note. 50-64 year olds will not be matched as they were born before the MACDP began collecting data.


What Does the Cooperative Agreement Gain with MACDP in the Emory Project?

  • This is NOT a population-based prevalence estimate. It’s an estimate of MACDP survivors who are living in the 5-county area sometime in 2008-2010 and who accessed the healthcare system during that period.

  • Can also be estimate of MACDP survivors who are living in GA (but outside the 5-county area) who accessed care through consortium or Medicaid.

    • And an estimate of survivors who didn’t “hit the system” in Georgia.

    • Can also serve to help develop a ‘correction factor’ for those who are still alive and who did not hit the HC system


Benefits of Linking MACDP Data

to the Population-based Estimate

  • A population-based estimate allows for:

  • Estimating age-specific prevalence in five-county area

  • Modeling the dispersion by age to estimate MACDP movement out of area and out of the state of Georgia

  • Modeling missed care between the MACDP and the population-based estimate by differences in prevalence rates by severity of diagnosis

  • (there will be MACDP cases that did not match & some will be due to lack of accessing care during the 2008-2010 period; hypothesis - less severe cases are less likely to seek health care)


Prevalence Measures for Comparisons

  • Determine age-specific prevalence (by decade) of those living insidethe 5-county area sometime between 1/1/08-12/31/10

  • Determine age-specific prevalence (by decade) of those living outside the 5-county area sometime between 1/1/08-12/31/10

  • GA Population-based

    • Five-County Prevalence (inside)

    • 41-County Prevalence (outside)

  • 46-County Prevalence

  • MACDP Survivors

    • Five-County Prevalence (inside)

    • 41-County Prevalence (outside)

  • 46-County Prevalence

  • Note. GMH & Pediatric Cardiology Services data will not be linked to MACDP per recent DUA agreement, October 2013.


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