Nashville Preconception Health Practice Collaborative

1. NashvillePreconception HealthPractice Collaborative Kimberlee Wyche Etheridge, MD, MPH Metro Public Health Department June 2011

2. Project Profile • Our Team Members • Metro Public Health Department (MPHD) • March of Dimes (MOD) • TN Dept of Health (TDOH) • Meharry Medical College (MMC) • Vanderbilt University Medical Center (VUMC)

3. Our Focus Nashville Preconception Health Team (N-PCHT) focus was on the subset of women with a unique risk factor: Women of reproductive age who are known to have, or at risk of having Sickle Cell Disease or Trait

4. Why Focus on Sickle Cell? • Genetic blood disorder caused by abnormal hemoglobin that damages and deforms RBC • Sickle Cell Disease • Affects millions throughout the world: • 72,000 U.S. individuals affected by SCD • One in every 600 African-American births • One in every 1,000—1,400 Hispanic-American births • Sickle Cell Trait • Approximately 3 million people in the US have the sickle cell trait. • 1 in 12 African Americans • 40-50x more people with trait than disease • Many with trait are unaware of their trait status, and unaware of their partner’s status Source: National Heart , Lung and Blood Institute, (NIH)

5. Sickle Cell and Preconception Health? • 1/3 of pregnancies in women with SCD terminate in abortion, stillbirth or neonatal death • Preconception Care (genetic counseling, contraception, good health habits, and awareness of pregnancy associated complications) can improve birth outcomes!

6. Sickle Cell Trait and Pregnancy Concerns: • Increased incidence of urinary tract infections and late term pylonephritis • Increased incidence of refractory anemia • Increased fetal distress in labor requiring emergency C-sections • Increased incidence of multiple gestation • Decreased incidence of prematurity (protective?)

7. The Local Story • Assumptions • 26% of Nashville’s 570,000 residents are African American (148,200) • Approximately 37,015 are reproductive age AA women • There are approximately 3,625 residents in Davidson County of reproductive age with Sickle Cell trait. (Avg 125/yr for ages 15-44), half are women • This means that 5% or 1 in 20 AA women of reproductive age in Nashville have Sickle Cell Trait

8. What We Set out to Do • Data • Explore data systems to help identify women with Sickle Cell Trait for targeted preconception health education • Program • Build upon life time wellness educational programs/curriculums to include information on Sickle Cell Disease and Trait as part of the preconception health/reproductive health module • Community education of reproductive age women through 15 question PCH surveys and education** • Policy • Recommend policy that would help make sure all at risk young women know their Sickle Cell status and.

9. Community Education • Created a 15 question Healthy Woman Healthy Future survey • Questions assessing protective factors, preventive factors and risk factors • Questions assessing knowledge of Sickle Cell status • Distributed surveys at health fairs, community events, classes, etc. • >1000 surveys completed • Surveys scored and analyzed as a continuous variable and also as a categorical variable. • Risk Levels were assigned based on scores: high risk, moderate risk, low risk determined by the # of questions answered affirmatively

10. Community Education Demographics for Surveys Average age range 18-24 85% of participants were African American Findings 39% of AA women knew their Sickle Cell Status 58% of AA women felt well informed about Sickle Cell 53% of AA women admitted to being tested for Sickle Cell in the past Youth 8-17 subset 75% knew about Sickle Cell Disease 12% knew their sickle cell status

11. Preconception Health Survey Key Results 21% of High Risk women knew their SS Status vs 36% of Moderate Risk women and 81% of Low Risk Women 75 % of High Risk women had a check up last year vs. 88% of Moderate Risk women and 95% of Low Risk women. 70% of High Risk women had had a pregnancy scare compared to 29% for moderate risk and only 5% for Low Risk women. - 17% of High Risk women considered themselves to be very healthy, compared to 61% of Low Risk women

12. Preconception Health Survey Take Away Lessons Sickle cell knowledge in the community is subpar Women who are at risk for poor pregnancy outcomes are less likely to know their SC status, less likely to have a medical home, and less likely to consider themselves healthy. Reiterates the importance of preconception health/care, especially in young women who are not looking to get pregnancy

13. Public Health Response

14. What’s in your Jeans/Genes? A A G G T T C C T G A DNA C A G T G Know your sickle cell status… Get tested, today! Message brought to you by the CityMatCH Nashville Preconception Health Team

15. Update on Next Steps • Data • Continue to explore systems that will help identify adolescents with Sickle Cell Trait for targeted preconception health education • Not successful getting a question about Sickle Cell on the local YRBS, BRFSS • Recommendations to revise PRAMS to include Sickle Cell Data submitted • Sickle Cell status now on the parental immunization cards.

16. Update on Next Steps • Program • Built upon life time wellness educational programs/curriculums currently in schools to include information on hemoglobinopathies as part of the preconception health/reproductive health module

17. Next Steps • Policy • Recommended policies to make sure all at risk young women know their Sickle Cell status • “Dear Parent” letter sent out to report abnormal NMS results was altered to recommend passing information on to child when comes of age • Legislate mandatory school physicals to enter 6th grade. Bill was watered down to sports physicals only. It met resistance and was dropped.

18. Questions: Kimberlee Wyche-Etheridge MD, MPH Kimberlee.wyche@nashville.gov 615-340-5614