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

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.

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

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

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

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

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

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

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

Agenda Continued… Geneticist CT AAP Chapter Champion 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

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”

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

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

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!

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

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

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

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.

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

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

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

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

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

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?)

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)

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

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

Summary Trainings provided positive benefits for Participants DPH 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