Extending Our Reach Through Partnerships June 2-6, 2013 Phoenix, Arizona

1. Extending Our Reach Through PartnershipsJune 2-6, 2013 Phoenix, Arizona

2. Extending Our Reach Through PartnershipsJune 2-6, 2013 Phoenix, Arizona

3. Extending Our ReachThrough Partnerships June 2-6, 2013 Phoenix, Arizona

4. Evaluating NYC’s Fetal Death Data Quality using Neonatal Deaths as a Benchmark2013 NAPHSIS Annual MeetingJune 2, 2013 Melissa Gambatese, MPH Director, Quality Improvement Unit Bureau of Vital Statistics New York City Department of Health and Mental Hygiene

5. Overview • Fetal Deaths in NYC • Perinatal mortality • Innovation • Comparing fetal deaths to neonatal deaths • Research question • Methods • Selected Results • Conclusions/Next Steps

6. NYC Fetal Deaths 2011

7. Perinatal Mortality Perinatal deaths Late-term fetal deaths Neonatal deaths 28 weeks 1st trimester 2nd trimester 3rd trimester BIRTH 28 days Conception Perinatal continuum

8. Perinatal mortality • Late-term fetal deaths account for: • 28% of US perinatal deaths • 25% of NYC perinatal deaths • Both events occur close in time along the perinatal continuum • Causes and preventative targets likely very similar • Research/programming gap between fetal and neonatal deaths

9. Innovation:Fetal vs. neonatal deaths • Both events captured by vital events registration systems • Viable data source: low-cost, representative • Comparing fetal to neonatal deaths allows for: • Comprehensive assessment of fetal death data quality and viability for research • Insight into fetal vs. neonatal death reporting and data quality disparities

10. Research Question How does the completeness of late-term fetal death vital event data compare to the completeness of neonatal death vital event data in NYC?

11. Methods • Sample • 2007-2011 events • Late-term fetal deaths (n=1930) • Neonatal deaths (n=735) • matched birth and death certificates

12. Methods Analysis 1- Data Completeness • Frequencies of missing/unknown on fetal vs. neonatal: • Maternal demographics • Maternal risk factors • Prenatal care • Infant characteristics • Frequencies of ill-defined causes of death on fetal vs. neonatal • Pre/post revision data completeness for fetal deaths • Electronic reporting system + 2003 US Standard Report of Fetal Death • Fetal death data completeness by reporting facility

13. Methods Analysis 2- Data provider survey • Respondents: NYC medical facilities that report fetal deaths • Questions on reporting requirements and barriers to reporting • Responses linked to data completeness indicator • Risk ratios

14. Selected results

15. Selected Results- Data Completeness

16. Cause of Death • Required on both death and fetal death • Nosologist reviews and assigns ICD cause of death code • Ill-defined causes of death • Extreme immaturity (P07.2) • Preterm/prematurity (P07.3) • Fetal death of unspecified cause (P95) • Ill-defined and unknown cause of mortality (Y34)

17. Selected Results: Cause of death Written causes • ‘Intrauterine fetal demise’ • ‘Unknown’ • ‘Stillbirth’/ ‘Stillborn’

18. Selected Results:Pre vs. Post-revision • In 2011, NYC health department implemented: • Electronic fetal death reporting system • 2003 US Standard Report of Fetal Death

19. Selected Results: Pre vs. Post-revision

20. Selected Results: Pre vs. Post-revision

21. Selected Results:Data completeness by reporting facility • “Any unknown” • Maternal risk factor • Month of last normal menses • Year of first prenatal care visit • Fetal weight

22. Selected Results: Data completeness by reporting facility 5.5% 4.8% 2 1

23. Selected Results:Data provider survey • Most facilities had clear understanding of NYC reporting requirements • Example: 82% correctly responded that NYC requires fetal death reporting for all gestational ages • Half (55%) considered electronic reporting easier • Many reported perceived barriers • 29% difficulties with physician involvement • 26% fetal death reporting too detailed/too many questions

24. Selected Results:Data provider survey vs. data quality

25. Conclusions • NYC late-term fetal death certificates lack maternal demographic, medical and cause of death information compared with neonatal records • Variability by hospital suggests opportunities for improvement exist • Implementation of electronic reporting system/revise d certificate impacted data completeness • Survey results suggest a need for increased provider training, physician engagement, and reduced reporting requirements.

26. Limitations • Unable to distinguish between “unknown” and missing/not reported • Lack of resources to conduct medical record audit • Unclear whether survey respondent was person most responsible for fetal death reporting at facility. • Survey respondents may have provided socially desirable responses. • Could not distinguish individual effects of electronic reporting system and revised certificate. • Findings limited to NYC data

27. Next steps • Examine reasons for quality differences across hospitals • Investigate differences in reporting practices between fetal and neonatal deaths. • Conference calls • Create tools to assist data providers in collecting information • Parent worksheet • Utilize electronic reporting system to improve data completeness • Expand data validation checks

28. Conclusions • Jurisdictions can use neonatal deaths as a benchmark for measuring quality of late-term fetal death data • Survey providers to identify barriers to reporting and link to data quality • Results can inform effective fetal death data quality initiatives

29. Acknowledgements • NYC DOHMH Bureau of Vital Statistics • Erica Lee, MPH • Elizabeth Begier, MD, MPH • Tara Das, PhD • Ann Madsen, PhD, MPH • Antonio Soto • NAPHSIS • NCHS

30. Questions?