1. Factors Associated with Lost to Follow-up in Massachusetts Jessica MacNeil, MPH Massachusetts Department of Public Health March 26, 2007

2. Snapshot of Massachusetts 78,000 births annually 51 birth facilities 29 Department of Public Health Approved Audiological Diagnostic Centers (ADCs) 62 Early Intervention (EI) Programs All children with hearing loss are eligible for EI services

3. Massachusetts Statistics - 2005 99% screened 1% referred 20% diagnosed with hearing loss 33% of bilateral referrals 14% of unilateral referrals 71% referred to Early Intervention (EI)

4. Lost to Follow-up Diagnostic Evaluation Massachusetts, 2003-2005*

5. Lost to Follow-up Diagnostic Evaluation Massachusetts vs. U.S., 2004

6. Lost to Follow-up Early Intervention Massachusetts, 2003-2005*

7. Strategies to Success Strong Foundations Law, regulations, guidelines Strong Partnerships Hospitals, ADCs, Early Intervention, Advisory Committee, Vital Records Strong Systems Childhood Hearing Data System, EBC, data linkages Strong Connections Outreach to families, bilingual staff, parent-to-parent support

8. Lost to Follow-up: Diagnostic Evaluation

9. Defining Lost to Follow-up: Diagnostic Evaluation 2003-2005 births Did not pass a newborn hearing screening Did not receive diagnostic results from ADCs Exclusions: parents declined follow-up/no consent (n=72), deceased (n=13), non- residents/moved out of jurisdiction (n=82), sealed records (n=1) Analytic sample size: 2,870

10. Follow-up by Infant Characteristics Birth weight 2,500 gm (N=2,462)93% <2,500 gm (N=408)91% Laterality of hearing screening referral Bilateral (N=685)92% Unilateral (N=2,185)92%

11. Follow-up by Maternal Characteristics Race/Ethnicity White (N=1,803)94% Non-white (N=1,067)90%* Language English (N=2,418)93% Other (N=452)90% Place of Birth 50 U.S. States (N=1,866)93% Foreign-born (N=1,004)92% * factor associated with lower follow-up, p<.05

12. Follow-up by Maternal Characteristics Age 20 years (N=2,657)93% <20 years (N=213)87%* Education level HS (N=2,403)94% <HS (N=467)83%* * factor associated with lower follow-up, p<.05

13. Follow-up by Maternal Characteristics Region of Residence Boston (N=545)94% Western (N=106)69%* Central (N=357) 94% Northeastern (N=266)92% Metro West (N=1,064)95% Southeastern (N=532)89%* * factor associated with lower follow-up, p<.05

14. Follow-up by Maternal Characteristics Marital status Married (N=1,001)96% Unmarried (N=1,866)86%* Parity 1 child (N=1,276)94% 2 children (N=958)93% 3+ children (N=630)87%* * factor associated with lower follow-up, p<.05

15. Follow-up by Maternal Characteristics Insurance Private (N=1,812) 96% Public (N=1,055) 86%* Employment status Mom & Dad employed (N=1,392)96% Dad only employed (N=899)91%* Mom only employed (N=177)90%* Mom & Dad not employed (N=402)85%* * factor associated with lower follow-up, p<.05

16. Follow-up by Maternal Characteristics Onset of Prenatal Care: Month 1-3 (N=2,241) 94% Month 4-6 (N=474)88%* Month 6-9 (N=100)89% Smoked during pregnancy No (N=2,657)93% Yes (N=213)83%* * factor associated with lower follow-up, p<.05

17. Factors Associated With No Follow-up: Univariate Analysis Non-white <20 years <HS education Residence in: Western MA Southeastern MA Unmarried 3+ children Publicly Insured Unemployed: Mom or Dad Both Parents Later prenatal care 2 nd trimester Smoked during pregnancy

18. Factors Associated With No Follow-up: Logistic Regression <HS educationaOR = 1.59 (1.14-2.23) Residence in: Western MAaOR = 6.49 (3.66-11.50) Southeastern MAaOR = 2.61 (1.65-4.13) UnmarriedaOR = 2.19 (1.53-3.14) 3+ childrenaOR = 1.95 (1.43-2.65) Publicly insuredaOR = 1.91 (1.31-2.77)

19. Lost to Follow-up: Early Intervention

20. Defining Lost to Follow-up: Early Intervention 2003-2005 births Diagnosed with hearing loss Not referred to EI services Data from Early Intervention Information System through December 31, 2006 Exclusions: moved out of jurisdiction (n=7) Analytic sample size: 600

21. Follow-up by Infant Characteristics Birth weight <2,500 gm (N=137)89% 2,500 gm (N=463)71%* Laterality of hearing loss Bilateral (N=371)84% Unilateral (N=229)62%* Degree of hearing loss Severe/profound (N=158)89% Mild/moderate (N=423)70%* * factor associated with lower follow-up, p<.05

22. Follow-up by Maternal Characteristics Race/Ethnicity White (N=400)78% Non-white (N=200)70%* Language English (N=504)76% Other (N=96)70% Place of Birth 50 U.S. States (N=410)79% Foreign-born (N=190)68%* * factor associated with lower follow-up, p<.05

23. Follow-up by Maternal Characteristics Age <20 years (N=52)75% 20 years (N=548)77% Education level HS (N=488)77% <HS (N=112)68%* * factor associated with lower follow-up, p<.05

24. Follow-up by Maternal Characteristics Region of Residence Boston (N=84)64%* Western (N=41)71%* Central (N=85) 84% Northeastern (N=73)90% Metro West (N=208)74%* Southeastern (N=109)72%* * factor associated with lower follow-up, p<.05

25. Follow-up by Maternal Characteristics Marital status Married (N=410)76% Unmarried (N=188)74% Parity 1 child (N=274)75% 2 children (N=197)77% 3+ children (N=129)73%

26. Follow-up by Maternal Characteristics Insurance Private (N=394) 76% Public (N=205) 74% Employment status Mom & Dad employed (N=285)76% Dad only employed (N=201)77% Mom only employed (N=31)71% Mom & Dad not employed (N=83)72%

27. Follow-up by Maternal Characteristics Onset of Prenatal Care: Month 1-3 (N=466) 76% Month 4-6 (N=101)72% Month 6-9 (N=19)68% Smoked During Pregnancy No (N=558)75% Yes (N=42)83%

28. Factors Associated With No Follow-up: Univariate Analysis 2,500 gm Unilateral hearing loss Mild/moderate loss Non-white Foreign-born <HS education Residence in: Boston Western MA Metro West Southeastern MA

29. Factors Associated With No Follow-up: Logistic Regression 2,500gmaOR = 3.70 (1.98-6.91) Unilateral lossaOR = 3.50 (2.31-5.31) Mild/moderate lossaOR = 3.30 (1.92-5.67) Foreign-bornaOR = 1.92 (1.23-2.99)

30. From Data to Action Develop targeted outreach strategies based on results of analysis Outreach efforts should focus on: Diagnostic evaluation: Residents of Western and Southeastern MA Unmarried, 3+ children, publicly insured, <HS education Early Intervention: Unilateral and mild/moderate losses Foreign-born mothers, normal birth weight

31. From Data to Action Improve communication with hospitals and diagnostic centers Educate providers on the importance of follow-up Collaborate with other state programs and support services to reach out to high-risk families

32. Conclusions In MA, 8% of infants referred for diagnostic evaluation became lost to follow-up Risk factors: maternal characteristics 75% of children with hearing loss were referred to Early Intervention Risk factors: infant characteristics

33. Conclusions Overall, follow-up in MA is significantly higher than the national average Continue to analyze data to determine where to prioritize outreach efforts

34. Acknowledgements Janet Farrell, Program Director Chia-Ling Liu, Research Analyst Sarah Stone, Program Coordinator Martha deHahn, Parent Outreach Specialist Amarilys Triana, Lost to Follow-up Specialist

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