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Cause of Fetal Death Update

VIEWS: 21 PAGES: 30

									Improving cause-of-fetal death
 data to strengthen perinatal
 mortality prevention efforts

           Donna L. Hoyert, Ph.D.
                Donna Glenn
        Marian F. MacDorman, Ph.D.
     National Center for Health Statistics
              Goal

To release fetal cause-of-death data
               nationally
                Importance
• Fetal mortality is an important public health
  issue
• Increased interest at NIH, CDC, Stillbirth
  Alliance, US Congress, and others
• Just considering fetal deaths 20+ weeks
  gestation, there were almost 26,000 fetal
  deaths in 2005:
Fetal, infant, and maternal deaths for
  selected years: US, 1935-2005
    Infant deaths

                                           •Number of infant deaths
                                           converging toward fetal
   Fetal deaths of 20+
    weeks gestation                        •Both are many times larger
                                           than maternal deaths




                         Maternal deaths
Relative number of fetal and infant
       deaths by area, 2005




                           It’s not very
                        unusual for areas
                        to have more fetal
                        than infant deaths
         Needs and responses
• Need to improve completeness and quality
• Responding to these needs and increased
  interest in fetal deaths, we have been
  updating you on the following efforts:

  – Quality control [VSCP 2008]
  – Induced terminations [NAPHSIS 2009]
  – Automated coding…
       Steps toward achieving goal:
Release fetal cause-of-death data nationally

    • 1921 Began routine fetal mortality publication, not including cause
    • 1968 Began to release public use data, not including cause
    • 1989 NCHS produced 1st coding guidelines
    • 1992 NCHS began routinely receiving cause data from areas
    • 2003 cause of death section of standard report of fetal death
      changed substantially
    • 2006 Began routine NVSR on fetal and perinatal mortality
    • 2007 Included fetal data in VitalStats data
    • 2009 NCHS powerpoint on coding distributed to areas
       Steps toward achieving goal:
Release fetal cause-of-death data nationally

    • 1921 Began routine fetal mortality publication, not including cause
    • 1968 Began to release public use data, not including cause
    • 1989 NCHS produced 1st coding guidelines
    • 1992 NCHS began routinely receiving cause data from areas
    • 2003 cause of death section of standard report of fetal death
      changed substantially
    • 2006 Began routine NVSR on fetal and perinatal mortality
    • 2007 Included fetal data in VitalStats data
    • 2009 NCHS powerpoint on coding distributed to areas
                   Problems
   in context of new fetal cause format

• Not all areas using the 2003 format
• Not all areas using the 2003 format code
  cause of fetal death
• As usual, certifiers enter information in all
  sorts of ways:
Placement of fetal causes using 2003
              format
           Incorrect: Other
           problems (e.g.,
           multiple causes in
           18a)



                                Correct: Single
                                cause in 18a, maybe
Incorrect: Single               additional info in 18b
cause in 18b, no cause
in 18a, blank


            Incorrect: Single
            cause in 18a, but
            repeated in 18b
   Other reporting characteristics
• Use of checkboxes and specify lines to report
  cause
  – 67% reports have a checkbox marked
  – 69% reports have an entry in a specify line
  – 39% reports have both checkboxes and specify
    lines
• Most common problem is mirror reporting
  (i.e. 18a is identical to 18b at 20%)
• Average – 2 conditions
   Summary of current approach
• Has not resulted in complete coded national
  data
• Recent changes (e.g., revised report, resource
  constraints) pose more challenges
• Inconsistency in how code:
 Comparing NCHS and State code
          agreement




Note: No state codes for other 5 states.
 Is there an alternative approach?
• Examine if there might be another approach
  – Feasibility study
  – Test project
  – Tentative exploration of data
             Feasibility study
• 2009: contract to look into how to move
  forward
• Decision: Develop incrementally
  – develop program to code the checkboxes and
    facilitate manual coding of literal entries
  – develop program to select initiating cause
  – review data and revise processing
       1st stage: Test project
• Mainly manually code at NCHS
• Assign codes for checkboxes
• Forced use of ACME
  – Workarounds:
     • P95 fetal death code is not valid for ACME. Used
       P969 to allow system to process. Changed to P95
     • Ill-defined P20.1, P20.9, and P21.9 are not included
       in ACME ill-defined table
     • Codes in 18a entered on line 1
     • Codes in 18b entered on Part II
                Assessment
• Can increase the proportion of records with
  coded data available using alternative
  approach
• Initial effort requires manual coding for
  around 70% of records, similar to feasibility
  study estimates
• Can improve consistency of coding by about
  20%
                 Assessment
• Need further decisions on some specific
  coding situations, requirements, develop
  tools, and document decisions:
  – Develop index for fetal death categories
  – Expand list of abbreviations for fetal deaths
  – Identify terms implying abortion
  – Develop dictionary to be used for automation
Examples of NCHS
   coded data
     Selected initiating causes of fetal
                   death




Note: 20+ weeks gestation
Selected initiating causes of fetal death by
     obstetrical estimate of gestation




Note: 20+ weeks gestation   Percent
      Percent mentioning congenital
 malformations as a cause by maternal age




Note: 20+ weeks gestation   Years of age
                   Summary
• An alternative approach would:
  – Ensure coding done consistently
  – Improve cause of fetal death data, and that, in
    turn, would strengthen perinatal mortality
    prevention efforts
• Could better respond to increased interest in
  fetal death
• Would have better data to be able to target
  prevention efforts at high-risk groups
         Summary of initial efforts
• While have made forward strides towards goal
  of releasing cause over time, have not realized
  goal
• Latest activities at NCHS: Feasibility study, initial
  steps towards developing automated system,
  and exploration of data
   – Can expand the number of areas with coded data
   – Can automate coding of 1/3rd of records with trivial
     effort
   – Expect can quickly expand the proportion can code
     automatically
   – Initial development tools match our expected codes
     reasonably well
How to continue to develop
      coding project
Now is still not the time to automate

• Cost of full automation is not justified by the
  number of records
• System requirements are not yet clearly
  defined
• Continue manual coding until a system can
  be defined
              State actions

• Provide education to certifiers
  – Enter appropriate conditions in each category
  – Maternal Conditions: congenital heart defect
    – is this maternal or fetus?
  – Do not use abbreviations
    AMA: advanced maternal age
             arthrogryposis multiplex congenital
            State actions

• Add spell checker to data entry systems
  including electronic registration system
            NCHS actions

• Develop complete fetal death coding
  instructions
  – Instructions for external causes
  – Instructions for maternal conditions
• Develop a more complete index for fetal
  deaths
• Update the valid code list
Requirements for new system

• Update valid code list
• Changes in ACME modification tables
  – Remove “due to” linkages
  – Remove entries which have invalid fetal
    death codes
  – Create trivial table
  – Create ill-defined table
  – Review ICD for additional table entries

								
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