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:

Infant deaths Maternal deaths Fetal deaths of 20+ weeks gestation Number of infant deaths converging toward fetal Both are many times larger than maternal deaths Fetal, infant, and maternal deaths for selected years: US,

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 1 st 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 1 st 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 Correct: Single cause in 18a, maybe additional info in 18b Incorrect: Single cause in 18a, but repeated in 18b Incorrect: Single cause in 18b, no cause in 18a, blank Incorrect: Other problems (e.g., multiple causes in 18a)

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

1 st stage: Test project Mainly manually code at NCHS Assign codes for checkboxes Forced use of ACME – Workarounds: P95fetal 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 gestationPercent

Percent mentioning congenital malformations as a cause by maternal age Years of ageNote: 20+ weeks gestation

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