1. Linking Data to Enhance EHDI Outreach Efforts in Massachusetts Massachusetts Department of Public Health Penny Liu, Sarah Stone, Janet Farrell March 3, 2005

2. Snapshot of Massachusetts <81,000 births per year <53 birth hospitals/centers <26 state-approved Audiologic Evaluation Centers (AECs) <70 Early Intervention (EI) programs /All children with hearing loss are eligible for EI services

3. Childhood Hearing Data System < State-developed system < Data support for / monitoring progress / identifying gaps < Case management < Collaboration capacity

4. CHDS: Data Sources EIIS CHDS EBC Legal/Demographic Medical/Confidential Hearing Screening Audiologic Evaluation Procedures Type/Degree of Loss Risk Indicators Family Intake Follow-up/Referral Early Intervention Medical Home

5. * Data are based on birth cohort 2002-2004. ** Data are based on the state-approved AECs reports only. < 99% screening rate* < 1% refer rate* < 86% of the DNP received diagnostic evaluation** /11% true lost to follow up /3% others (e.g., non-consents, evaluated at non-AECs) < 71% of those with hearing loss enrolled in EI MA Accomplishments

6. Strategies to Success < Passage of newborn hearing screening law < Establishment of Advisory Committee < Amendment of birth facility licensure regulations < Development of guidelines for birth facilities and diagnostic centers < Development of outreach program

7. Lost-to-Follow-Up 2002-2004, MA* * Lost to follow up is defined as those who did not pass the screen and did not receive a diagnostic evaluation. Data exclude non-consents, sealed records, and non-AECs evaluations.

8. Lost-to-Follow-Up MA vs. US* * US data are based 2001data reported by 27 states. MMWR 52 (41):981-984. MA data are based 2002-2004 birth cohort, excluding non-consents, sealed records, and non-AECs evaluations.

9. Lost-to-Follow-Up in MA* by Laterality of Referral aOR** = 1.23 (0.91, 1.64) * Data are based on birth cohort 2002-2004. * * Adjusted odds ratio, adjusting for childs birth weight, maternal age, race/ethnicity, education, preferred language, health insurance, and residential region. N = 696N = 1,715

10. Lost-to-Follow-Up in MA* by Maternal Education aOR** = 1.71 (1.21, 2.42) * Data are based on birth cohort 2002-2004. * * Adjusted odds ratio, adjusting for childs birth weight, laterality of referral, maternal age, race/ethnicity, preferred language, health insurance, and residential region. N =388N = 2,023

11. Lost-to-Follow-Up in MA* by Health Insurance aOR** = 2.68 (1.93-3.71) * Data are based on birth cohort 2002-2004. * * Adjusted odds ratio, adjusting for childs birth weight, laterality of referral, maternal age, race/ethnicity, education, preferred language, and residential region. N = 1,400N = 787

12. Lost-to-Follow-Up in MA* by Residential Region aOR** = 3.48 (2.20-5.50) * Data are based on birth cohort 2002-2004. * * Adjusted odds ratio, adjusting for childs birth weight, laterality of referral, maternal age, race/ethnicity, education, preferred language, and health insurance N = 112N =2,299

13. From Data to Action < Educate providers on the importance of follow-up < Collaborate with other state programs and supporting services to reach out to high- risk families < Improve communication with hospital social service departments and other care coordination for families

14. Acknowledgement < Nancy Wilber, Principal Investigator < Martha deHahn, Parent Outreach Specialist < Jessica MacNeil, Epidemiologist < Amy DeCoste, Outreach Specialist

15. Massachusetts Universal Newborn Hearing Screening Program http://www.mass.gov/dph/fch/unhsp/index.htm Newborn.Hearing@state.ma.us 617-624-5959