Factors Associated with

Lost to Follow-up in Massachusetts

Jessica MacNeil, MPH

Massachusetts Department of Public Health

March 26, 2007

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

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)

Lost to Follow-up Diagnostic EvaluationMassachusetts, 2003-2005*

0%

2%

4%

6%

8%

10%

2003 2004 2005 2003-2005

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

0%

10%

20%

30%

40%

50%

60%

MA US

Lost to Follow-up Early InterventionMassachusetts, 2003-2005*

0%

5%

10%

15%

20%

25%

30%

2003 2004 2005 2003-2005

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

Lost to Follow-up:Diagnostic Evaluation

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

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%

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

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

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

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

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

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

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 2nd trimester

Smoked during pregnancy

Factors Associated With No Follow-up: Logistic Regression <HS education aOR = 1.59 (1.14-2.23) Residence in:

Western MA aOR = 6.49 (3.66-11.50) Southeastern MA aOR = 2.61 (1.65-4.13)

Unmarried aOR = 2.19 (1.53-3.14) 3+ children aOR = 1.95 (1.43-2.65) Publicly insured aOR = 1.91 (1.31-2.77)

Lost to Follow-up: Early Intervention

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

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

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

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

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

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%

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%

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%

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

Factors Associated With No Follow-up: Logistic Regression ≥2,500gm aOR = 3.70 (1.98-6.91) Unilateral loss aOR = 3.50 (2.31-5.31) Mild/moderate loss aOR = 3.30 (1.92-5.67) Foreign-born aOR = 1.92 (1.23-2.99)

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

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

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

Conclusions Overall, follow-up in MA is significantly

higher than the national average Continue to analyze data to determine

where to prioritize outreach efforts

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

Massachusetts Universal Newborn Hearing Screening Program

http://www.mass.gov/dph/fch/unhsp/index.htm

Newborn.Hearing@state.ma.us

617-624-5959