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

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

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

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

* Data are based on birth cohort ** 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

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

Lost-to-Follow-Up , 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.

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

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

Lost-to-Follow-Up in MA* by Maternal Education aOR** = 1.71 (1.21, 2.42) * Data are based on birth cohort * * 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

Lost-to-Follow-Up in MA* by Health Insurance aOR** = 2.68 ( ) * Data are based on birth cohort * * 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

Lost-to-Follow-Up in MA* by Residential Region aOR** = 3.48 ( ) * Data are based on birth cohort * * 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

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

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

Massachusetts Universal Newborn Hearing Screening Program