August 2003 Perinatal Periods Of Risk From Data to Action to Improve Women and Infants’ Health A CityMatCH “How-to-Do” Workshop

August 2003 The “How to Do” PPOR Workshop will provide participants with the opportunity to: 1.Recognize and understand all components of the PPOR Approach 2. Assess “Analytic and Community readiness” 3.Achieve a common understanding of what it takes to conduct the first phase of analysis 4.Learn how to shift focus from PPOR data to using PPOR Approach for systems change

August 2003 Infant Mortality Rate, Urban County, * White rate for 2001 is provisional Source: DHHS

August Infant Mortality Rate, Urban County vs. State Source: DHHS * Questionable due to small numbers

August 2003 Why Do We Need Another Way to Look at Infant Mortality?  Most current approaches do not always identify gaps in community resources.  Most current approaches do not target resources for prevention activities.  Most current approaches do not use locally determined benchmarks to define disparities

August 2003 PPOR: From Data to Action

August 2003 PERINATAL PERIODS OF RISK PRACTICE COLLABORATIVE: 13 Participating U.S. Cities, Baltimore Columbus Durham Jacksonville Kansas City Louisville Nashville New Haven Orlando Philadelphia Phoenix Raleigh St. Petersburg PPOR-PC Partners

August 2003 PPOR – Practice Collaborative Our purpose was to determine and describe, together, the best practices in using the Perinatal Periods of Risk approach as a tool to improve maternal and infant health in communities… and, when necessary, to further develop, modify and strengthen the approach for its best use.

August 2003  Adding new tools to help solve some very old problems  Translating data into action  Changing the way we do business “PPOR” is about :

August 2003 Headline News… Locally-defined disparities serve to target further investigations and tailor prevention Philadelphia PA Successful integration of PPOR, FIMR, Healthy Start yields better prevention of feto-infant deaths Louisville KY Stronger local/state partnership builds better data capacity to address health disparities Columbus OH State-level “Practice Collaborative” model promotes consistent best uses of PPOR in urban areas Jacksonville FL

August 2003 The Value-Add of PPOR: ….. from Knowing to Doing Builds data and epi capacity Promotes effective data use Strengthens essential partnerships Fosters integration with other key efforts Localizes assessment to action process Encourages evidence-based interventions Helps leverage resources Enables systems change for perinatal health

August 2003 Perinatal Periods Of Risk… a comprehensive approach 1)Bring community partners together to build consensus, support, and partnership. 2)“Map” fetal & infant deaths by birth weight & age at death. 3)Focus on understanding the overall fetal- infant death rate. 4)Look for “opportunity gaps” between different groups. 5)Target further investigations and actions on the gaps. 6)Mobilize for sustainable systems change.

August 2003 Needs Assessment Strategies Plan Implementation Monitoring Evaluation Investment Readiness PPOR: a Tool for Planning

August 2003 Community Foundations Cycle for Change Conceptual Framework for the Perinatal Periods of Risk Approach Planning Cycle for Action PPOR Connections

August 2003

6 Basic Steps: Perinatal Periods of Risk Approach 1)Bring community partners together to build consensus, support, and partnership.

August 2003 Community Readiness: From Concepts to Tools Partnership Leadership Commitment Change RAISING THE ROOF FOR PPOR: What Shape Is Your Tent?

August 2003 RAISING THE ROOF FOR PPOR: What Shape Is Your Tent?

August 2003 Louisville June 2001December 2002

August 2003 Community Readiness: From Concepts to Tools RAISING THE ROOF FOR PPOR: What Shape Is Your Tent? Tool for engaging partners Tool for reaching consensus Tool for identifying joint assets Tool for revealing critical gaps Tool for developing strategy

August Basic Steps: Perinatal Periods of Risk Approach 1)Bring community partners together to build consensus, support, and partnership. 2)“Map” fetal & infant deaths by birth weight & age at death.

August 2003  Use linked infant birth – death file  Include fetal deaths Building the PPOR “Map”: What data do we use?

August 2003  Fetal development is part of a continuum that runs from conception to the 1 st birthday.  Fetal deaths may have similar causes as infant deaths.  The determination of “fetal” versus “infant” death is based on judgment. Why include fetal deaths?.  Including fetal deaths increases analytic power.

August 2003 PPOR Map of Fetal-Infant Mortality: What events are not included?  Fetal deaths that occur before 24 wks  Fetal deaths weighing under 500 grams  Live births weighing less than 500 grams  Spontaneous and induced abortions

August 2003 Developing the “Map” of Feto-infant Mortality: Cluster Analyses Used the US fetal death and linked birth & infant death files Clustered by both underlying cause of death category & maternal risk factors Used near consensus findings of 8 hierarchal cluster methods: Average, Complete, Centroid, EVM, Flexible, McQuitty, Single, & Ward Compared results to theoretical model

August 2003 Developing the “Map” of Feto-infant Mortality <1000 g g g g Fetal Deaths Early Neonatal Post neonatal Late Neonatal

August 2003 Developing the “Map” of Feto-infant Mortality Age at Death Birthweight g g Fetal (24 wks) Neonatal Postneonatal

August 2003 Perinatal Periods Of Risk Fetal-Infant Mortality Map g g Fetal Death Neonatal Post- neonatal Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health

August 2003 From Data to Potential Action Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Preconceptional Health Health Behaviors Perinatal Care Prenatal Care High Risk Referral Obstetric Care Perinatal Management Neonatal Care Pediatric Surgery Sleep Position Breast Feeding Injury Prevention

August 2003 What do we mean by “PPOR Analytic Phases”? Phase 1: Identifies the populations with overly high numbers and rates of mortality. It examines the 4 components—Maternal Health/ Prematurity, Maternal Care, Newborn Care & Infant Health—for various populations and uses a comparison group to estimate “excess deaths.” Phase 2: Explains the excess deaths. It examines reasons for the excess deaths through further epidemiologic studies, death reviews, program and policy reviews and other community assessments.

August 2003 Examines the four “Periods of Risk” — Maternal Health/ Prematurity, Maternal Care, Newborn Care & Infant Health — for various population groups Identifies groups and periods of risk with the most deaths, highest rates. Uses comparison groups to estimate “excess death” PPOR Phase 1

August 2003 Phase I Example What are Phase I Results for Douglas County?

August 2003 PPOR Map of Fetal-Infant Deaths Douglas County, NE, All Races Maternal Health/ Prematurity 119 Maternal Care 73 Newborn Care 52 Infant Health Total Fetal-Infant Deaths 28,956 Fetal Deaths & Live Births

August 2003 How Do We Calculate the Fetal-Infant Mortality Rate? Douglas County, NE, All Races

August 2003 How Do We Calculate the Fetal-Infant Mortality Rate? Douglas County, NE, All Races Fetal Deaths 24+ wks. 182 Infant Deaths 298 Fetal-Infant Deaths Fetal Deaths 24+ wks. 28,840 Live Births 28,956 Live Births & Fetal Deaths + / NumeratorDenominator = 10.3 Fetal-Infant Deaths Per 1,000 Live Births & Fetal Deaths

August 2003 Map of Fetal-Infant Mortality Rates Fetal-Infant Mortality Rate = 298 x 1,000 28, = 10.3 ( ) Douglas County, NE, All Races

August Basic Steps: Perinatal Periods of Risk Approach 1)Bring community partners together to build consensus, support, and partnership. 2)“Map” fetal & infant deaths by birth weight & age at death. 3)Focus on understanding the overall fetal-infant death rate.

August 2003 PPOR Map of Fetal-Infant Mortality Douglas County, Nebraska All Races, Fetal-Infant Rate= Fetal-Infant Rate= Fetal-Infant Rate=

August 2003 White non-HispanicBlack non-Hispanic White Fetal-Infant Rate = 8.9 Black Fetal-Infant Rate = 17.9 PPOR Map of Fetal-Infant Mortality Douglas County, NE, by Race,

August 2003 From Data to Potential Action Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Preconceptional Health Health Behaviors Perinatal Care Prenatal Care High Risk Referral Obstetric Care Perinatal Management Neonatal Care Pediatric Surgery Sleep Position Breast Feeding Injury Prevention

August Basic Steps: Perinatal Periods of Risk Approach 1)Bring community partners together to build consensus, support, and partnership. 2)“Map” fetal & infant deaths by birth weight & age at death. 3)Focus on understanding the overall fetal-infant death rate. 4)Look for “opportunity gaps” between different groups.

August 2003 Perinatal Periods of Risk: What is the “Gap”? ASK: Which women/infants have the "best" outcomes? ASSUME: all infants 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 target group with those of the comparison group(s) CALCULATE: excess deaths (= target – comparison groups). This is your community’s “Opportunity Gap.”

August 2003 Which “Comparison Group” should we use? Which women and infants have “best” outcomes? Where should the “bar” be set?

August 2003 Defined by maternal characteristics 20 or more years of age 13 or more years of education Non-Hispanic white women 12 U.S. cities with adequate reporting Low (25th percentile) group-specific death rates National PPOR Initiative’s “External” Comparison Group Source: NCHS Data, Calculations by CDC/CityMatCH

August Total Fetal-Infant Mortality Rate= 5.8 National External Comparison Group’s Fetal-Infant Mortality Rates Source: NCHS Data, Calculations by CDC/CityMatCH

August 2003 Map of Fetal-Infant Mortality Rates Total Fetal- Infant Mortality Rate = 10.3 Douglas County, NE, All Races

August 2003 Fetal-Infant Mortality Rates Douglas County, NE vs. External Comparison Douglas County Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Fetal-Infant Mortality Total External Comp'son Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Fetal-Infant Mortality

August 2003 Excess Excess Fetal-Infant Mortality Rates Douglas County, NE, __ Douglas County Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Fetal-Infant Mortality Total External Comp'son Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Fetal-Infant Mortality = Douglas County Excess Mortality Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Fetal-Infant Mortality Total

August 2003 Fetal-Infant Mortality Rates Douglas County, NE, Total and by Race,

August 2003 Fetal-Infant Mortality Rates Douglas County, NE, Total and by Race,

August 2003 Excess Fetal-Infant Mortality Rates Douglas County, NE,

August 2003 Number of Excess Fetal-Infant Deaths Douglas County, NE,

August 2003 Excess Fetal-Infant Mortality using External Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total Whites Blacks 131 excess deaths 65 excess White deaths 49 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 Excess Fetal-Infant Mortality using External Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total Whites Blacks 131 excess deaths 65 excess White deaths 49 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 Excess Fetal-Infant Mortality using External Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total Whites Blacks 131 excess deaths 65 excess White deaths 49 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 From Data to Potential Action Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Preconceptional Health Health Behaviors Perinatal Care Prenatal Care High Risk Referral Obstetric Care Perinatal Management Neonatal Care Pediatric Surgery Sleep Position Breast Feeding Injury Prevention

August 2003 What if we used a “Comparison Group” from within our own community? Which Douglas County women and infants have “best” outcomes?

August 2003 “Internal” Douglas County Comparison Group Defined by maternal characteristics 20 or more years of age 13 or more years of education Non-Hispanic White women Residents of Douglas County

August 2003 Number of Fetal-Infant Deaths in the Internal Comparison Group* Douglas County, NE, Maternal Health/ Prematurity 35 Maternal Care 32 Newborn Care 21 Infant Health Total Fetal-Infant Deaths 14,173 Fetal Deaths & Live Births * applying National PPOR Definition to Douglas County data

August Total Fetal-Infant Rate= 7.3 Fetal-Infant Mortality Rates in the Internal Comparison Group Douglas County, NE,

August 2003 Fetal-Infant Mortality Rates Douglas County, NE,

August 2003 Excess Fetal-Infant Mortality Rates Douglas County, NE,

August 2003 Number of Excess Fetal-Infant Deaths Douglas County, NE,

August 2003 Excess Fetal-Infant Mortality using Internal Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total WhitesBlacks 87 excess deaths 33 excess White deaths 44 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 Excess Fetal-Infant Mortality using Internal Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total WhitesBlacks 87 excess deaths 33 excess White deaths 44 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 Excess Fetal-Infant Mortality using Internal Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total WhitesBlacks 87 excess deaths 33 excess White deaths 44 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 Summary: Excess Fetal-Infant Mortality Rates, Using Internal and External Comparison Groups Douglas County, NE,

August 2003 Summary: Excess Fetal-Infant Deaths, Using Internal and External Comparison Groups Douglas County, NE,

August 2003 Questions? Comments? Observations?

August Basic Steps: Perinatal Periods of Risk Approach 1)Bring community partners together to build consensus, support, and partnership. 2)“Map” fetal & infant deaths by birth weight & age at death. 3)Focus on understanding the overall fetal- infant death rate. 4)Look for “opportunity gaps” between different groups. 5)Target further investigations and actions on the gaps.

August 2003 What do we mean by “PPOR Analytic Phases”? Phase 1: Identifies the populations with overly high numbers of deaths. It examines the 4 death components—Maternal Health/ Prematurity, Maternal Care, Newborn Care & Infant Health—for various populations and uses a comparison group to estimate “excess death”. Phase 2: Explains the excess deaths. It examines reasons for the excess deaths through further epidemiologic studies, death reviews, program and policy reviews, and other community assessments.

August 2003 Phase 2: Target Investigations & Prevention Efforts on the Gaps Shift effort and attention to the group(s) that contributes most to the gap. Conduct further studies or mortality reviews on the group(s) that contribute(s) to the gap - Phase 2 studies. Examine current prevention efforts on the group(s) that contribute(s) to the gap - Phase 2 policy/program reviews.

August 2003 PPOR – Douglas County Initial Phase 2 Analyses  Causes of Death: Newborn Care and Infant Health  Multiple Gestation: How big is its effect on fetal-infant mortality?  Birthweight Distribution vs. Birthweight- specific Mortality: How much mortality is from the number of very small babies vs. how many babies die at a given birth weight? (“Kitagawa Analysis”)

August 2003 Phase 2: Preliminary Results  Causes of Death: Newborn Care and Infant Health

August 2003 Excess Fetal-Infant Mortality using External Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total Whites Blacks 131 excess deaths 65 excess White deaths 49 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 Excess Fetal-Infant Mortality using Internal Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total WhitesBlacks 87 excess deaths 33 excess White deaths 44 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 Leading Causes of Death, by Race/Ethnicity, for Combined Newborn Care and Infant Health PPOR Components, Douglas County, Major "other causes" include perinatal conditions, injury and infection.

August 2003 Major Causes of Death (Infants only), by PPOR Component, Douglas County, Maternal Health/ Prematurity Newborn Care Infant Health Perinatal Conditions Congenital Anomalies SIDS

August 2003 Phase 2: Preliminary Analyses  Causes of Death: Newborn Care and Infant Health  Birthweight Distribution vs. Birthweight-specific Mortality: How much mortality is from the number of very small babies vs. how many babies die at a given birth weight once they are born? (“Kitagawa Analysis”)  Multiple Gestation: How big is its effect on fetal- infant mortality?

August 2003 Feto-Infant Mortality Birthweight Distribution Birthweight Specific Mortality Risk Factors Interventions Access Socio-Economic Smoking Race Medical Conditions Gender Gestational age Race Medical Conditions Prenatal Care Smoking Cessation Tocolytics Perinatal Care Quality Care Referrals Health Insurance Primary Care Content Availability Referral Systems Transport Systems Expertise

August 2003 A. Total Excess (All Birthweight Categories) B. Maternal Health/ Prematurity Excess Kitagawa Analysis Douglas County,

August 2003 Phase 2: Preliminary Analyses  Causes of Death: Newborn Care and Infant Health  Birthweight Distribution vs. Birthweight- specific Mortality: How much mortality is from the number of very small babies vs. how many babies die at a given birth weight once they are born? (“Kitagawa Analysis”)  Multiple Gestation: How big is its effect on fetal-infant mortality?

August 2003 Examining the Impact of Multiple Gestations in Douglas County, Nebraska 1.What is the prevalence of multiple gestations in Douglas County? 2.What is the prevalence of multiple gestations by race/ethnicity, and over time? 3.What is the mortality experience for multiple gestations? 4.How much of overall fetal-infant mortality is explained by multiple gestations?

August 2003 Examining the Impact of Multiple Gestations in Douglas County, Nebraska 1.What is the prevalence of multiple gestations in Douglas County? 2.What is the prevalence of multiple gestations by race/ethnicity, and over time? 3.What is the mortality experience for multiple gestations? 4.How much of overall fetal-infant mortality is explained by multiple gestations?

August 2003 Prevalence of Multiple Gestations among Fetal Deaths and Live Births **The percentage of multiple gestations is significantly higher in Douglas County than in the US and in Midwest Cities, although the significance between Douglas County and Midwest Cities decreases after adjusting for maternal race, age and education. * Midwest Cities are Kansas City, Wichita, St. Louis, Toledo and Cincinnati.

August 2003 Examining the Impact of Multiple Gestations in Douglas County, Nebraska 1.What is the prevalence of multiple gestations in Douglas County? 2.What is the prevalence of multiple gestations by race/ethnicity, and over time? 3.What is the mortality experience for multiple gestations? 4.How much of overall fetal-infant mortality is explained by multiple gestations?

August 2003 Prevalence of Multiple Gestations, Douglas County, NE, % Multiple Gestation Births *The increase in multiple gestations over the three time periods is significant

August 2003 Examining the Impact of Multiple Gestations in Douglas County, Nebraska 1.What is the prevalence of multiple gestations in Douglas County? 2.What is the prevalence of multiple gestations by race/ethnicity, and over time? 3.What is the mortality experience for multiple gestations in Douglas County? 4.How much of overall fetal-infant mortality is explained by multiple gestations?

August 2003 Fetal-Infant Mortality Rates for Single Gestations, Douglas County and the U.S. *Midwestern cities are the only significant difference with Douglas County (11.2/100,000 vs. 9.4/100,000).

August 2003 Fetal-Infant Mortality Rates for Multiple Gestations, Douglas County and the U.S. There are no significant differences for comparisons with Douglas County. There are too few non-White multiple gestations to give stable rates.

August 2003 Summary: Plurality-Specific Fetal-Infant Mortality Rates Mortality rates for single gestations are significantly lower in Douglas County than in selected Midwestern cities. There are no significant differences in mortality rates for multiple gestations in Douglas County compared to the U.S. and selected Midwestern cities.

August 2003 Examining the Impact of Multiple Gestations in Douglas County, Nebraska 1.What is the prevalence of multiple gestations in Douglas County? 2.What is the prevalence of multiple gestations by race/ethnicity, and over time? 3.What is the mortality experience for multiple gestations? 4.How much of overall fetal-infant mortality is explained by multiple gestations?

August 2003 A Different Way to Look at the Question: Population Attributable Risk Population Attributable Risk (PAR) = risk population - risk unexposed PAR measures the amount by which the overall frequency of the disease in the population would be reduced, if the exposure of interest were removed.  “What is the effect of the exposure on the overall population ?”

August 2003 Population Attributable Risk for Multiple Gestations, Douglas County and Midwest Cities Douglas County Midwest cities Population Attributable Risk Midwest cities data are from Douglas County data are from

August 2003 Fetal-Infant Mortality Birthweight Distribution Birthweight Specific Mortality Risk Factors Interventions Access Socio-Economic Smoking Race Medical Conditions Gender Gestational age Race Medical Conditions Prenatal Care Smoking Cessation Tocolytics Perinatal Care Quality Care Referrals Health Insurance Primary Care Content Availability Referral Systems Transport Systems Expertise How much mortality is from the number of very small babies vs. how many babies die at a given birth weight once they are born? (“Kitagawa Analysis”)

August 2003 A. Maternal Health/ Prematurity Excess Compared to External Comparison Kitagawa Analysis: All Races Douglas County, B. Maternal Health/ Prematurity Excess Compared to Internal Comparison Birthweight Distribution Birthweight-Specific Mortality Birthweight Distribution vs. Birthweight-specific Mortality: How much mortality is from the number of very small babies vs. how many babies die at a given birth weight once they are born?

August 2003 A. Maternal Health/ Prematurity White Mothers Kitagawa Analysis: By Race Douglas County, External Comparison Group B. Maternal Health/ Prematurity Black Mothers Birthweight Distribution Birthweight-Specific Mortality

August 2003 Douglas County Feto-Infant Mortality Rates by PPOR Component,

August 2003 Douglas County Feto-Infant Mortality Rates by PPOR Component - White,

August 2003 Douglas County Feto-Infant Mortality Rates by PPOR Component - Black,

August 2003 Excess Fetal-Infant Mortality using External Comparison Group Douglas County, NE, All Races, Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Total Whites Blacks 131 excess deaths 65 excess White deaths 49 excess Black deaths 298 Total Fetal-Infant Deaths

August 2003 Philadelphia’s PPOR Phase 2 Analysis : Combine PPOR methodology with Geographical Information Systems (GIS). Benefits: 1) Provides information for fine tuning existing programs. 2) Provides information on where new programs are needed. 3) Provides information for specific communities 4) Serves as a tool for epidemiological investigations

August 2003 Infant Mortality Density Analysis West Oak Lane HS West/SW HS North

August 2003 Philadelphia PPOR Summary PPOR analysis is starting point not the ending point Provides a framework for discussing the problem Provides a framework for further investigation of the problem

August 2003 Louisville’s Lessons Learned Improve existing data and/or develop other data sets as necessary: better data for better information PPOR integration into the existing community initiatives enhanced the MCH/women’s health capacity/efforts Be flexible, adjust the system by using the evidence- based findings Need right stakeholders and political will to be successful Work as a team, build partnership and collaboration

August 2003 Recommendations PPOR Phase 1 Link births with deaths Identify the groups with gaps FIMR Home interviews + medical records Data + stories (paint faces behind the numbers) Identify problems/gaps in services PPOR Phase 2 Vital Statistics data Statistical data analysis Analyze the impact of different risk factors Develop evidence-based prevention strategies (preconceptional, during pregnancy and interconceptional) e.g. Healthy Start Improve women and children’s health Reduce the existing racial disparities Improve women and children’s health Reduce the existing racial disparities MCH Initiative : “Healthy women, children and families”

August 2003 Perinatal Periods Of Risk Approach …not just data. 1)Bring community partners together to build consensus, support, and partnership. 2)“Map” fetal & infant deaths by birth weight & age at death. 3)Focus on understanding the overall fetal- infant death rate. 4)Look for “opportunity gaps” between different groups. 5)Target further investigations and actions on the gaps. 6)Mobilize for sustainable systems change.

August 2003 P erinatal P eriods o f R isk: For More Information: