Illinois Department of Public Health
Division of Epidemiologic Studies
Adverse Pregnancy Outcome Reporting System (APORS)
    
PUBLIC USE DATA FILE USER MANUAL
October 2006
 
   The Illinois public dataset is in ASCII format and contains individual records 
   of children reported with adverse pregnancy outcomes among Illinois residents
   from 1989 onwards.  Adverse pregnancy outcomes include birth defects,
   birth weight < 1500g, fetal death, infant death during newborn hospitalization,
   serious congenital infections, diagnosed exposure to drugs and certain other 
   serious conditions.
 
   Separate files are available for the state, counties, and regions (Chicago, 
   suburban Cook County, the collar counties and the remainder of Illinois).  The 
   collar counties are DuPage, Kane, Lake, McHenry and Will.  Confidentiality is 
   maintained by aggregating data within individual records into categories, and 
   limiting the number of variables available on the dataset.
 
   The Illinois dataset covers 1989-2004 and contains birth year, gender, ethnicity,
   race, gestational age, maternal age and indicators of whether the child had a
   birth defect, a neural tube defect, and/or Down syndrome.
 
   The regional dataset covers 1989-2003 and contains birth year (within a
   three-year interval), mother’s region of residence at delivery, gender, ethnicity,
   race, gestational age, maternal age and indicators of whether the child had a
   birth defect, a neural tube defect, and/or Down syndrome. 
       
   The county dataset covers 1989-2003 and contains birth year (within a five-year
   interval), mother’s county of residence at delivery, ethnicity, race,
   gestational age, maternal age and an indicator of whether the child had a birth
   defect.
 
 
TO USE THESE FILES:
 
1. Either print or copy the README.txt file to your hard drive. This test file 
contains the file layouts and codes for the data, as well as documentation on
data quality and completeness.
   PLEASE READ THIS FILE BEFORE USING THE DATA FILES. 
 
2. Select the file(s) you would like to use
 
3. Download the files you need to your hard drive.  The files contain the data in a 
   compressed form and are self-expanding  files.  To open one, select Run from the 
   Start menu and enter its file name (below). 
 
   Illinois data (320KB compressed; 3,211KB uncompressed) 
                                      IL04.exe
   County data (384 KB compressed; 3,850 uncompressed)
                                      ILCTY03.exe            
   Region data (352KB compressed; 3,998 KB uncompressed)
                                      ILreg03.exe
 
4. When you are prompted, enter the name of the folder in which you wish to store
   the data.
   
5. The ASCII data files are not incorporated into a software program and therefore
   require the use of other statistical or database software packages for data
   analysis.  Spreadsheet programs such as Excel, Lotus, or QPRO cannot be used since
   the number of records in each file is greater than 95,000).
 
CONSIDERATIONS WHEN INTERPRETING APORS DATA
   APORS is the most complete source of population-based data on adverse pregnancy
   outcomes that exists in Illinois.  All Illinois hospitals are mandated to report
   infants with an adverse pregnancy outcome born to Illinois women. (Perinatal
   centers in St. Louis, Mo., voluntarily participate.)
   APORS is considered a passive surveillance system because reports are sent to 
   IDPH rather than APORS staff going to hospitals to identify children with adverse
   outcomes. Such passive systems, though economical and relatively easy to operate,
   are likely to underestimate adverse outcome rates. The Trust for America’s Health 
   (2002) gave APORS a rating of B because of this lack of active surveillance
   activities. (Trust for America's Health.  Birth Defects Tracking and Prevention:
   Too Many States Are Not Making the Grade. February 2002
   http://healthyamericans.org/state/birthdefects/display.php?StateID=IL)
 
   The following facts should be considered when interpreting APORS data.
 
1. APORS relies on hospitals to report children with an adverse pregnancy outcome.  
   Compliance and data quality varies among facilities.  Poor compliance will lead 
   to underestimation of the number of APORS cases.
 
2. APORS rarely obtains data for Illinois children born out of state.
 
3. Only conditions diagnosed during the newborn stay are reported by hospitals.  
   Some adverse pregnancy outcomes are not identified during the newborn period, so
   the numbers reported here are probably an underestimate.
 
4. Children who were aborted, or miscarried at 20 weeks or less are not included in
   these reports.
 
5. APORS has conducted a number of projects to identify birth defects diagnosed during

   infancy, but after the newborn period.  In addition, the charts of children born

   in 2002 or later have been reviewed by APORS staff and additional diagnoses added.

   It is therefore not appropriate to compare rates of birth defects before and after

   2002.

 
 
 
DATA QUALITY
   For children delivered between 1989 and 2004, the percentages of records with
   missing variables are given below.
 
   APORS performs reabstraction studies to assess the quality of reporting by the
   state’s hospitals.  These studies assess the agreement between case data
   routinely submitted to APORS and the actual APORS information found in the
   reporting facility’s medical record. The results for the variables in these
   datasets are given below.  A copy of the most recent reabstraction study
   Reabstract Study – Hospital Reports of Adverse Pregnancy Outcomes” is available
   From the Illinois Department of Public Health, Division of Epidemiologic Studies
   upon request.
 
     Variable     Percent missing  Percent inaccurate
     Gender            0.0%                0.5%
     Race              0.4%               13.2%
     Ethnicity         0.0%               11.1%
     Delivery date     0.0%                2.0%
     County            0.1%               10.2%
     Gestational age   1.5%                5.8%
     Maternal age      2.7%            not assessed
 
DIAGNOSES
   Most of the children with a birth defect are reported to APORS.  Examination of
   charts for children delivered in 2002 and 2003 indicate that at about eight
   percent of children reported to APORS with no birth defect actually have one.
   However, 15 percent of children reported with birth defects are found to have none
   on chart review.  Nineteen percent of Down syndrome cases were unreported;
   55 percent of central nervous system defects were unreported.
 
 
REFERENCES AND QUESTIONS
 
Please reference the source of these data in any published document as follows:  
 
   Illinois Department of Public Health, Adverse Pregnancy Outcome Reporting System
   public data set, October 2006.
    
If you have questions about the datasets, please contact
    
    Jane Fornoff, D. Phil.
    Illinois Department of Public Health
    Division of Epidemiologic Studies
    605 West Jefferson Street
    Springfield, IL  62761
 
    phone (217) 785-7126
    e-mail jane.fornoff@illinois.gov
 
FILE LAYOUT for the state file
 
   IL04.txt 
   Record Format
    
   Data File               Positions    Length
   Delivery year               1           4
   Gender                      5           1  
   Ethnicity                   6           1
   Race                        7           1
   Gestational Age             8           5
   Maternal Age               13           3
   Birth Defect               16           1
   Down Syndrome              17           1
   Neural Tube Defect         18           1
   
Codes for data fields
   Gender:              M = male
                        F = female or ambiguous
   Ethnicity:           N = not Hispanic or unknown
                        Y = Hispanic
   Race:                W = White
                        B = Black
                        A = Asian or Pacific Islander
                        O = other
   Gestational age:     U = unknown
                      <27 = less than 27 weeks gestation (extremely premature)
                    27-36 = between 27 and 36 weeks of gestation (premature)
                      37+ = 37 or more weeks of gestation
   Maternal age:        U = unknown
                      <35 = less than 35 years old at delivery
                      35+ = 35 year or older at delivery
   Birth defect:        Y = yes, birth defect present
                        N = no birth defect present 
   Down syndrome:       Y = yes, Down syndrome diagnosed
                        N = no, Down syndrome not diagnosed
   NTD:                 Y = yes, neural tube defect present
                        N = no neural tube defect present 
    
FILE LAYOUT for the region file
 
   ILReg03.txt 
   Record Format
    
   Data Field              Positions    Length
   Delivery year range         1            9
   Region                     10            2
   Gender                     12            1
   Ethnicity                  13            1
   Race                       14            1
   Gestational Age            15            5
   Maternal Age               20            3
   Birth Defect               23            1
   Down Syndrome              24            1
   Neural Tube Defect         25            1
 
 
Codes for data fields
   Delivery Year Range:    1989-1991
                           1992-1994
                           1995-1997
                           1998-2000
                           2001-2003
   Region:                 CH = Chicago
                           CS = Suburban Cook County
                           CC = Collar Counties (DuPage, Kane, Lake, McHenry, Will)
                           NC = Remainder of Illinois
   Gender:                  M = male
                            F = female or ambiguous
   Ethnicity:               N = not Hispanic or unknown
                            Y = Hispanic
   Race:                    W = White
                            B = Black
                            A = Asian or Pacific Islander
                            O = other
   Gestational age:         U = unknown
                          <27 = less than 27 weeks gestation (extremely premature)
                        27-36 = between 27 and 36 weeks of gestation (premature)
                          37+ = 37 or more weeks of gestation
   Maternal age:            U = unknown
                          <35 = less than 35 years old at delivery
                          35+ = 35 year or older at delivery
   Birth defect:            Y = yes, birth defect present
                            N = no birth defect present 
   Down syndrome:           Y = yes, Down syndrome diagnosed
                            N = no, Down syndrome not diagnosed
   NTD:                     Y = yes, neural tube defect present
                            N = no neural tube defect present 
 
FILE LAYOUT for the county file
 
   ILCty03.txt 
   Record Format
    
   Data Field                  Positions    Length
   Delivery year range            1            9
   County                        10            3
   Ethnicity                     14            1
   Race                          15            1
   Gestational Age               16            5
   Maternal Age                  21            3
   Birth Defect                  24            1
 
 
Codes for data fields
   Delivery Year Range: 1989-1993
                        1994-1998
                        1999-2003
   County:              001   Adams
                        003   Alexander
                        005   Bond
                        007   Boone
                        009   Brown
                        011   Bureau
                        013   Calhoun
                        015   Carroll
                        017   Cass
                        019   Champaign
                        021   Christian
                        023   Clark
                        025   Clay
                        027   Clinton
                        029   Coles
                        031   Cook
                        033   Crawford
                        035   Cumberland
                        037   DeKalb
                        039   DeWitt
                        041   Douglas
                        043   DuPage
                        045   Edgar
                        047   Edwards
                        049   Effingham
                        051   Fayette
                        053   Ford
                        055   Franklin
                        057   Fulton
                        059   Gallatin
                        061   Greene
                        063   Grundy
                        065   Hamilton
                        067   Hancock
                        069   Hardin
                        071   Henderson
                        073   Henry
                        075   Iroquois
                        077   Jackson
                        079   Jasper
                        081   Jefferson
                        083   Jersey
                        085   JoDaviess 
                        087   Johnson
                        089   Kane
                        091   Kankakee
                        093   Kendall
                        095   Knox
                        097   Lake
                        099   LaSalle
                        101   Lawrence
                        103   Lee
                        105   Livingston
                        107   Logan
                        109   McDonough
                        111   McHenry
                        113   McLean
                        115   Macon
                        117   Macoupin
                        119   Madison
                        121   Marion
                        123   Marshall
                        125   Mason
                        127   Massac
                        129   Menard
                        131   Mercer
                        133   Monroe
                        135   Montgomery
                        137   Morgan
                        139   Moultrie
                        141   Ogle
                        143   Peoria
                        145   Perry
                        147   Piatt
                        149   Pike
                        151   Pope
                        153   Pulaski
                        155   Putnam
                        157   Randolph
                        159   Richland
                        161   Rock Island
                        163   St Clair
                        165   Saline
                        167   Sangamon
                        169   Schuyler
                        171   Scott
                        173   Shelby
                        175   Stark
                        177   Stephenson
                        179   Tazewell
                        181   Union
                        183   Vermilion
                        185   Wabash
                        187   Warren
                        189   Washington
                        191   Wayne           
                        193   White
                        195   Whiteside
                        197   Will
                        199   Williamson
                        201   Winnebago
                        203   Woodford
                        217   Unknown
   Ethnicity:             N = not Hispanic or unknown
                          Y = Hispanic
   Race:                  W = White
                          O = other (includes Black and Asian) 
   Gestational age:       U = unknown
                        <27 = less than 27 weeks gestation (extremely premature)
                      27-36 = between 27 and 36 weeks of gestation (premature)
                        37+ = 37 or more weeks of gestation
   Maternal age:          U = unknown
                        <35 = less than 35 years old at delivery
                        35+ = 35 year or older at delivery
   Birth defect:          Y = yes, birth defect present
                          N = no birth defect present