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


Overview of general prevalence estimates
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.



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


Data sources for population based prevalence
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
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
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


F ive county e stimates possible over estimate because
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


F ive county e stimates possible under estimate because
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



Map of 46 counties
Map of 46 counties

Atlanta

Augusta


Should we add 41 counties
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 counties1
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
And the Answer Is. . . .?



Planned strategy2 macdp based estimate link macdp to data sources includes ndi ga vital records
Planned Strategy2:MACDP-based EstimateLink MACDP to Data Sources includes NDI & GA Vital Records


Relationship of presumed macdp survivors to clinical medicaid datasets
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.



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: into CDC

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 into CDC

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
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 Emory Project?

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
Prevalence Measures Emory Project?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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