Reaching Out to Professionals: Workshop Development

1. Reaching Out to Professionals:Workshop Development Amy Mirizzi, MPH Donna C. Maselli, RN, MPH Connecticut Department of Public Health Hartford, CT

2. Faculty Disclosure Information In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in my presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA.

3. Connecticut EHDI Program Components • Department of Public Health • Lead agency for universal newborn hearing screening program • Program development • Tracking & follow-up • Education • Diagnostic Testing Centers • Performs diagnostic test battery • Refers infants to E.I. • Reports to DPH • CT Birth-to-Three System • Lead agency for IDEA, Part C

4. Newborn Hearing Screening Task Force • Meets monthly to discuss issues surrounding EHDI • Interdisciplinary members representative of: • Diagnostic Testing Centers (Audiologists), ENT, Family, Deaf Counselor, Deaf Educator, Hospital Staff, DPH and others from state political and government agencies • Role • Developed ‘Best Practice Standards for Infant Diagnostic Testing’ • Assists with the development of educational materials • Participates in trainings of health care providers • Provides technical expertise as needed • Assists in planning and quality improvement

5. Identified Need for Trainings • Target Audiences • Audiologists (Diagnostic Testing Centers) • Birth Hospital staff • Needs assessment • MCHB UNHS new grant initiatives • Task Force members experience in the field • DPH tracking & lost to follow-up rates • Communication with 16 diagnostic testing centers

6. Audiology Training Newborn Hearing Screening Symposium October 26, 2005

7. Newborn Hearing Screening Symposium • Target Audience • Audiologists working with infants and children • 16 diagnostic testing centers • Co-sponsored with University of Connecticut’s Department of Communication Sciences • Approved ASHA CE Provider • 0.6 CEUs (Advanced Level: Professional Area) • Full day conference

8. Newborn Hearing Screening Symposium • Objectives: • To increase awareness of appropriate diagnostic procedures and early intervention services. • To enhance knowledge of current topics and initiatives related to childhood hearing loss. • To increase knowledge of medical issues related to congenital, early onset, and progressive hearing loss • To facilitate prompt and accurate diagnosis of hearing loss and referral to EI

9. Speakers & Agenda Topics • Pediatric Audiologist • The Diagnostic Evaluation • Various dx tests and equipment • Task Force recommended battery of tests • Tips on how to improve technique • Pediatric Audiologists • Case Studies in the Diagnostic Process • Learn from shared experiences • Otolaryngologist • The ENT Evaluation

10. Agenda Continued… • Geneticist • Benefits of Genetic Testing/When Referrals to Other Specialists are Indicated • Statistics related to genetics and hearing loss • Genetic testing • Syndromic versus non-syndromic hearing loss • Inheritance patterns • Case Studies • Referrals to other Specialists • CT AAP Chapter Champion • Connecting with the Primary Care Provider • Resources for PCP’s • Role of the AAP & PCP in EHDI

11. Agenda… • DPH EHDI Staff • Past, Present, and Future Initiatives • Program overview • Statistics • Results of PCP survey • Reporting to DPH • Study results “The Lack of EI on Infants with Hearing Loss”

12. Agenda… • NE Regional MCHB EHDI Audiologist • Risk Factors for Hearing Loss • JCIH Risk indicators • Importance of timely and appropriate diagnosis of hearing loss • Principles and issues of early intervention and follow-up • State Department of Education Representative • Services for Children with Hearing Loss in the School System • State education statistics related to children with special health care needs • Education-related mandates and policies • IEP vs. IFSP • Section 504 of the Rehabilitation Act

13. Evaluations • Feedback on whether participants felt… • Objectives were met • Information presented was educational • Presenters were effective • Materials were relevant • Location and meeting space were convenient and functional

14. Evaluation Comments • Excellent Symposium • Very informative and worthwhile • Excellent! • Very comprehensive & useful information • Very informative day with excellent speakers • Excellent range of topics within the larger ‘Hearing Impairment’ theme • AAP Web slides difficult to read in handout • Nice job!

15. Are there any topics that you would like to see additional training on? • Would like more training on actual testing procedures: problems, pitfalls, how to overcome these. In talking to a number of the persons in the diagnostic centers, some do not see high volumes of children and do not feel comfortable with diagnosing. More training might reduce the diagnosis time (increase age at diagnosis). • ASSR vs. ABR

16. Outcomes from Hearing Symposium • Recommendations for future trainings shared with University of CT for 2006 upcoming audiology training • DPH staff conducting presentation on EHDI program to audiology students

17. Hospital Training Public Health Initiatives for Newborns November 2, 2005

18. Public Health Initiatives for Newborns • Target Audience • Hospital staff • Well baby nursery and NICU Nurse Managers and nurses • Hospital hearing screening staff • Objectives: • To enhance knowledge of current public health initiatives for newborns. • To reinforce newborn screening purposes, techniques, and reporting practices and requirements, including the importance of monitoring and follow-up of at risk infants.

19. Speakers & Agenda Topics • DPH Breastfeeding Coordinator (WIC) • DPH Breastfeeding Initiatives • Program’s past, present, and future initiatives • Data reporting and collection • Breastfeeding rates by hospital • Medical Director of Cystic Fibrosis Screening Program • Newborn Screening for Cystic Fibrosis • Disease description, including signs and symptoms • Screening rationale and statistics • Benefits of universal screening and early identification

20. Agenda continued… • DPH • The Connecticut Immunization Registry & Tracking System • History of immunizations in CT • Parental consent to be in the registry • Overview and benefits for pediatric practices, parents, and public health • Compliance & incentives to increase reporting

21. Agenda… • Newborn Hearing Screening Program • Data Reporting • Enhancements to the internet based reporting system • Newborn Screening: Past, Present, & Future Initiatives • Review of screening, diagnostic, and early intervention process • Genetic components • Laboratory NBS and Birth Defects Registry • PCP & family survey results • Screening methods for NICU babies • Early Intervention Specialty Center Audiologist • Risk Indicators and the Importance of Follow-Up Monitoring • Congenital, early onset, and progressive hearing loss • Validate parental concern

22. Evaluation Comments • Very good review and chance to ask questions, clarify expectations, and enhance practice at hospital level • Very interesting, informative conference – relevant to our practice. Provided combination of new information and reinforcement of current process for NBS – will bring information back to staff • Too much for afternoon session • Enjoyed questions, interactive component • “Risk indicators” basically review of earlier speaker • Appreciated the positive feedback about our efforts in screening • Vents were loud and made it difficult to hear questions/comments from audience • Positive feedback regarding sharing information through case studies • Looking forward to next year’s conference

23. Suggestions • Offer nursing CEUs for future conferences • Open conference to other providers, such as: • Pediatricians • Pediatric nurse practitioners • PAs in pediatric offices

24. Are there any topics that you would like to see additional training on? • Hearing Screening: • More info/education about Birth-to-Three (EI), so we can better refer and describe service to our parents • Is there information about hearing and speech in the rainbow packet? (i.e. milestones for parents to watch for?)

25. Are there any topics that you would like to see additional training on? • Lab Screening: • How to talk to parents about uncertain diagnoses (already aware of fact sheets) • PKU “rules” – a map or flow diagram (i.e. if transfused – do this in “x” time period) • Information on blood specimen collection • A talk offering guidance as to expected follow up (as far as repeating NBS heelstick specimens, immediate repeat vs. before discharge, etc.) • Immunization Registry: • More information about entering data into the Immunization Registry in the case of infants hospitalized for 9-12 months after birth (and thus receiving their immunizations as an inpatient)

26. Are there any topics that you would like to see additional training on? • Other: • Follow up on HIV initiatives since implementation of mandatory testing • Continued updates are great (keep current without repeating old information) • Orientation session for new people in hospitals to reporting system and Electronic Vital records System (EVRS) – who will be responsible for data entry • Car seat safety laws

27. Outcomes from Public Health Initiatives Conference • Evidence of collaboration between various MCH programs within DPH • Recommendations for future training needs identified and shared

28. Summary • Trainings provided positive benefits for • Participants • Networking opportunity • Opportunities to learn from others, develop ideas, ask questions • DPH • Show appreciation for participants dedication to newborns • Share protocol changes and new incentives • Highlight DPH initiatives • Identify topics for future trainings