Workshop/Breakout Title Workshop/Breakout Speaker(s)

1. Using Perinatal Periods of Risk (PPOR) to Address Disparities in Infant Mortality Magda G. Peck, ScD Carol Gilbert, MS Workshop/Breakout Title Workshop/Breakout Speaker(s)

2. Objectives During this session, participants will have the opportunity to: • Recognize the six stages of the PPOR Approach • Understand what it takes to conduct the first phase of analysis • Understand strategic roles for States in using the PPOR approach • Identify effective local and state strategies for integrating PPOR approach with other tools

3. CityMatCHMission Improving the health and well-being of urban women, children and families by strengthening public health organizations and leaders in their communities.

4. WhyPPOR? • Establishes a common framework for the complex issues of infant mortality • Provides a new way to examine existing data to prioritize actions • Offers value-add to existing community efforts • Identifies gaps in community strategies, efforts and resources • Helps target resources for prevention activities • Mobilizes the community to strategic action

5. 6 Stages of thePerinatal Periods of Risk Approach 1: Assure Analytic and Community Readiness 2: Conduct Analytic Phases of PPOR 3: Develop Strategic Actions for Targeted Prevention 4: Strengthen Existing and/or Launch New Prevention Initiatives 5: Monitor and Evaluate Approach 6: Sustain Stakeholder Investment and Political Will

6. Stage 1: Assure Analytic and Community Readiness Provides a framework for discussing the problem

7. Analytic Readiness • Fetal death certificate files (24+ wks, 500+ grams) • Infant death certificate files (500+ grams) • Linked birth—infant death certificate files • Critical number of events (overall, per cell) • Key data items missing or poor quality

8. Community Readiness Champions, Leadership and Adequately Trained Staff who: • Understand the feto-infant mortality problem • Understand the work plan • Commit to providing resources for the investigation and solutions • Commit to providing resources for community collaboration • Give priority and champion initiatives based on the data

9. Community Readiness:From Conceptsto Tools • Leadership • Partnership • Commitment • Change RAISING THE ROOF FOR PPOR: What Shape Is Your Tent?

10. PPOR Community Readiness Tool http://www.citymatch.org/PPOR/HowTo/HowToDo.htm Workshop/Breakout Title Workshop/Breakout Speaker(s)

11. 6 Stages of thePerinatal Periods of Risk Approach 1:Assure Analytic and Community Readiness 2: Conduct Analytic Phases of PPOR 3: Develop Strategic Actions for Targeted Prevention 4: Strengthen Existing and/or Launch New Prevention Initiatives 5: Monitor and Evaluate Approach 6: Sustain Stakeholder Investment and Political Will

12. Infant Mortality Rate,Douglas County, 1990-2001 Source: DHHS

13. Analytic Phases of PPOR -- 14 Steps Phase 1:Identifies populations with overly high (EXCESS) rates and numbers of fetal and infant mortality (Steps 1- 8) Phase 2: Explains why the excess deaths occurred (Steps 9 – 14)

14. PPOR analytic methods-14 steps Analytic Preparation • Acquire access to three required vital records computer files • Prepare vital records files and required data elements • Assess data quality • Assess study sample size

15. PPOR analytic methods-14 steps Phase I:THE MAP • Define study population • Restrict study population by birthweight and gestational age • Calculate numbers and rates for the feto-infant mortality map • Compare different time periods, subpopulations and geographic areas

16. Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health PPOR MapsFetal & Infant Deaths Age at Death Fetal Death Post- neonatal Birthweight Neonatal 500-1499 g 1500+ g

17. Maternal Health/ Prematurity Preconception Health Health Behaviors Perinatal Care Prenatal Care High Risk Referral Obstetric Care Maternal Care Perinatal Management Neonatal Care Pediatric Surgery Newborn Care Safe Sleep Breast Feeding Injury Prevention Infant Health PPOR is about ACTION

18. PPOR Redefines Disparities, Estimates “Opportunity” Gaps • ASK: Which women/infants have the "best" outcomes? • ASSUME: allinfants can have similar “best” outcomes • CHOOSE: a comparison group(s) (‘reference group’) who already has achieved “best” outcomes • COMPARE: fetal-infant mortality rates in your targetgroup with those of the comparison group(s) • CALCULATE:excessdeaths (= target minus [-] comparison groups). This is your community’s “Opportunity Gap.”

19. 97 / 4.2 Maternal Health/ Prematurity (35 fetal deaths, 62 live births) 48 / 2.1 Maternal Care (fetal deaths) 44 / 1.9 Newborn Care (live births) 47 /2.0 Infant Health(live births) Map of Feto-Infant Mortality Douglas County, All Races2000-2002 236 Fetal-Infant Deaths 23,282 live births and fetal deaths = 10.1 overall rate

20. White Fetal-Infant Rate =8.6 (N=16,045) Black Fetal-Infant Rate =17.6 (N=3,291) 3.1 8.8 2.0 1.9 1.6 2.4 2.4 4.0 White non-Hispanic Black non-Hispanic PPOR Map of Feto- Infant Mortality Douglas County, By Race, 2000-2002(N=number of live births and fetal deaths)

21. PPOR analytic methods-14 stepsPhase 1, continued: THE GAPS • Select reference population • Calculate excess mortality rates and numbers of deaths • Identify excess mortality gaps

22. 2.2 1.1 1.0 1.5 National PPOR Initiative “External” Reference Group • Defined by maternal characteristics • 20 or more years of age • 13 or more years of education • Non-Hispanic white women • residents the United States at the time of the baby’s birth. Total Fetal-Infant Mortality Rate=5.9

23. Excess Fetal-Infant Mortality RatesOverall Population Douglas County, 2000-2002 (External Reference Group) _____________________________________________

24. Fetal-Infant Mortality Rates Racial/Ethnic subgroups ofDouglas County, 2000-2002 (external reference group)

25. ExcessFetal-Infant Mortality RatesBased on EXTERNAL reference group Racial/Ethnic subpopulations of Douglas County, 2000-2002

26. EXCESS NUMBER OF DEATHSEstimated From Fetal-Infant Mortality Ratesusing External Comparison Group Douglas County, 2000-2002

27. Douglas County by Race 2000-2002 estimated Excess Number of Deathsbased on external comparison group

28. Excess (Internal)Fetal-Infant Mortality Rates Overall populationDouglas County, 2000-2002 ______________________________________________

29. Fetal-Infant Mortality RatesDouglas County, by Race, Internal Comparison Group 2000-2002

30. Douglas County by Race2000-2002 Excess Fetal-Infant Mortality Ratesbased on internal comparison group

31. Douglas County by Race2000-2002 Estimated Excess Number of Deathsbased on internal comparison group

32. Analytic Exercise http://www.citymatch.org/PPOR/HowTo/HowToDo.htm Workshop/Breakout Title Workshop/Breakout Speaker(s)

33. PPOR PHASE II:A framework for targeting further investigations and actions Phase 1:Identifies the populations with overly high numbers and rates of mortality (Steps 1 -8) Phase 2:Explains why the excess deaths occurred (Steps 9 -14)

34. PPOR Phase II Analysis Three Directions • Community health and health systems assessment • Fetal Infant Mortality Reviews • Further epidemiologic study

35. PPOR Phase II Analysis Strategy: What works • Eliminate from consideration factors that are unlikely to be contributing • Find and target factors that are likely to be contributing

36. PPOR Phase II Analysis Strategy: What works A factor is a likely contributor if: • It is KNOWN to cause prematurity or death based on scientific literature. • It is MORE PREVALENT in a population with excess deaths Further analysis can help prioritize among likely contributors

37. PPOR analytic methods-14 stepsPhase 2 AnalysisFurther Investigations • Identify biologic mechanisms for excess mortality • Estimate prevalence of risk and preventive factors by type of mechanism • Estimate the impact of the risk and preventive factors.

38. Phase 2 Analysis Plan • Protocols Developed for : • Infant Health • Maternal Health/Prematurity • Ideas provided for : • Maternal Care

39. Phase 2 Analyses Preparation OTHER DATA SETS to consider: • Hospital discharge system • PRAMS • Birth defects surveillance • Pregnancy/Pediatric Nutrition Surveillance • Injury surveillance • STD reports • Child abuse reporting systems • Program files (Medicaid, WIC, etc) • Linked program files

40. PPOR Phase II AnalysisUseful Epidemiological Tools • Kitagawa • Relative Risk • Odds Ratio • Population Attributable Risk • Logistic Regression • Poisson Regression • Multi-level Modeling

41. Phase II Example: Excess Maternal Health/Prematurity Douglas County, external reference group • Maternal Health/Prematurity Excess • 67% due to a higher than normal proportion of VLBW babies (<1500g) • 33% due to lower than normal survival rates of VLBW babies From Kitagawa Analysis of estimated excess deaths <1500 g.

42. Phase II Example: Causes of Death forInfantHealthPeriod of Risk (%) Douglas County N = 54 deaths

43. 6 Basic Stages: Perinatal Periods of Risk Approach Stage 1: Assure Analytic and Community Readiness Stage 2: Conduct Analytic Phases of PPOR Stage 3: Develop Strategic Actions for Targeted Prevention Stage 4: Strengthen Existing and/or Launch New Prevention Initiatives Stage 5: Monitor and Evaluate Approach Stage 6: Sustain Stakeholder Investment and Political Will

44. Charles Drew Health Center* CityMatCH* Creighton Univ Med Center Community Resources for Infants & Babies Douglas Co. BOH Douglas Co. Health Depart One World Community Health Centers (formally Indian Chicano Health Center)* Nebraska Chapter MOD Metro Omaha Medical Society Nebraska Health and Human Services System Omaha Healthy Start * Our Healthy Community Partnership* UNMC - Pediatrics, Obstetrics VNA Engage Community Partners

45. So what did we learn from PPOR? Maternal Health/Prematurity (Very Low Birth Weight, <1500 g. or under 3.3 pounds) period of risk has the biggest part of feto-infant mortality for all Douglas County women and infants Compared to other cities, Omaha has a higher proportion of excess VLBW feto-infant deaths due to “birthweight-specific mortality” (survivalonce tiniest babies are born). Larger stillborns (fetal deaths >1500 g in the Maternal Care period of risk) is a larger component of White feto-infant mortality and deserves further study. The rate of infants born weighing >1500 g who die after the first month of life (Infant Healthperiod of risk) is 4 timeshigher for Blacks than for Whites. SIDS and other causes play major roles.

46. 2002 Blueprint for Action:Douglas County (Omaha), Nebraska • Review the Perinatal System– how does it REALLY work for all women and infants in Douglas County? • Implement FIMR: Study specific cases to understand if and how deaths could have been prevented • Focus onVery Low Birth Weight survival • Unify allSIDS Preventionin Douglas County

47. 6 Stages of thePerinatal Periods of Risk Approach 1: Assure Analytic and Community Readiness 2: Conduct Analytic Phases of PPOR 3: Develop Strategic Actions for Targeted Prevention 4: Strengthen Existing and/or Launch New Prevention Initiatives 5: Monitor and Evaluate Approach 6: Sustain Stakeholder Investment and Political Will

48. PPOR Fosters integration with other key efforts • Fetal Infant Mortality Reviews • Previous assessments • Previous perinatal studies or surveillance • PRAMS or other surveys • Health system assessments • Asset mapping • Previous policy and program evaluations

49. Core/Steering Group Metro Area Medical Society (MOMS) Physician Advisory Board Baby Blossoms Promote / link to key and priority projects 5. Improve data infrastructure (data driven actions) Coordination: Cross talk, communications; Monitor: success, impact, progress *1. Perinatal Systems Review – (new March of Dimes grant) 2. Prematurity Prevention Perinatal Periods of Risk (PPOR) *3. VLBW Survival (MOMS-led look at NICU Outcomes) Fetal Infant Mortality Review (FIMR) *4. Unified SIDS Initiative Improved data quality Our Healthy Community Partnership (OHCP) *BBC priority projects Baby Blossoms Collaborative July, 2003

50. Action #1: Review Perinatal Systemthrough Appreciative Inquiry • Received small March of Dimes (MOD) Grant to conduct focus groups with high risk moms • The Mother’s Journal project gathered positive perinatal experiences using appreciative inquiry (what worked) • A Preconception Health flipbook was developed as a community-training tool • “Are You Ready to Have a Baby?” culturally appropriate curriculum for Sudanese, American Indian and Hispanic populations living in Omaha.