Procedural Issues in Operating Successful Newborn Hearing Screening Programs

Organizing the Hospital Program Who’s in charge? Who will do the screening Should screening be done with parents present? Regular coordination meetings Making sure every baby is screened

Communicating with Parents Results of the screening test Pass Refer Inpatient versus outpatient Importance versus alarm When to communicate results What does the screening test really mean? Screening versus diagnosis Late onset hearing loss Cultural competent information and support

Information for Parents of Children Identified with Hearing Loss Coordination with the family’s medical home Referral to a pediatric audiologist Unbiased information about communication options Family to family support

Communicating with Physicians Individual contact to explain program and why it is important Grand Rounds, Committee Meetings, and screening demonstrations. What were the results for their babies? Physicians are the key to effective follow-up What is a medical home? Medical management issues

Communicating with the Hospital Recording results in the child’s medical record Documenting successes and difficulties of the program Regular reports to hospital administrators

Training Initial “hands-on” training Don’t train more people than you need Regular supervision Retraining to accommodate staff turnover

Keeping Refer Rates Low Schedule screening when babies are in best behavioral state Make a second effort prior to discharge Minimize noise and confusion Regular supervision and assistance Swaddling Back-up equipment and supplies

What Does “Refer Rate” Really Mean What Does “Refer Rate” Really Mean? For 1000 Babies: # Referred for Diagnostic Evaluation Inpatient screening only with AABR: ………………….. 20 to 40 (2% to 4%) OAE: ……………………. 50 to 80 (5% to 8%) OAE and AABR: ………. 10 to 30 (1% to 3%) Inpatient and Outpatient Screening AABR: ……………………5 to 10 (0.5% to 1%) OAE:……………………….5 to 10 (0.5% to 1%)

Data and Patient Information Management Information is power! Benefits of computer-based data management Should you design your own, modify an existing system, or purchase a commercial product? Safeguarding your data

Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence % of Refers Site Size Per 1000 with Diagnosis Rhode Island (3/93 - 6/94) 16,395 1.71 42% Colorado (1/92 - 12/96) 41,976 2.56 48% Utah (7/93 - 12/94) 4,012 2.99 73% Hawaii (1/96 - 12/96) 9,605 4.15 98%

Tracking "Refers" is a Major Challenge (continued) Initial Rescreen Births Screened Refer Rescreen Refer Rhode Island 53,121 52,659 5,397 4,575 677 (1/93 - 12/96) (99%) (10%) (85%) (1.3%) Hawaii 10,584 9,605 1,204 991 121 (1/96 - 12/96) (91%) (12%) (82%) (1.3%) New York 28,951 27,938 1,953 1,040 245 (1/96-12/96) (96.5%) (7%) (53%) (0.8%)

Purposes of an EHDI Data System Research Program Improvement and Quality Assurance Screening Diagnosis Intervention Medical, Audiological and Educational

Nature and Use of Information is Different For: Hospitals State Departments of Health National Agencies

Computerized Patient/Data Management for Hospital-based UNHS Programs Tracking/scheduling related to screening, follow-up, diagnosis, and intervention Communication with stakeholders (e.g., parents, physicians, audiologists) Reporting to funding and administrative agencies Program management and quality control

Requirements of New Jersey Newborn Hearing Screening Program Provide literature to parents about implications of hearing loss Complete modules 3, 5, & 6 of the EBC By 1/01/2002, screen all babies prior to discharge or before one month of age Receiving hospitals are responsible for transferred babies For babies who don’t pass the screen: Hospital responsible for: Informing parent and giving them a FU report Giving information about resources to parents Person doing follow-up must inform Special Child Health Services Registry by 6 mos of age or when complete Hospitals must establish procedures for follow-up

Statewide EHDI Data System Monitoring program status to identify in-service and technical support needs Assisting with follow-up for diagnostic and intervention programs (safety net) Access to data for public health policy and administrative decisions Linking to other Public Health Information data-bases (e.g., Immunization, WIC, Vital Statistics, Early Intervention, Birth Defects)

Resources are available to help www.infanthearing.org

Financing the Program How much does it really cost?

Actual Costs of Operating a Universal Newborn Hearing Screening Program Cost Personnel $ 60,654 Screening Technicians (avg. 103 hrs./week) Clerical (avg. 60 hrs./week) Audiologist (avg. 18 hrs./week) Coordinator (avg. 20 hrs./week Fringe Benefits (28% of Salaries) 16,983 Supplies, Telephone, Postage 12,006 Equipment 5,575 Hospital Overhead (24% of Salaries) 14,557 TOTAL COSTS $110,775 Cost Per Infant Screened = $110,775 4,253 = $26.05 : Maxon, A. B., White, K. R., Behrens, T. R., & Vohr, B. R. (1995) Referral rates and cost efficiency in a universal newborn hearing screening program using transient evoked otoacoustic emissions (TEOAE). Journal of the American Academy of Audiology , 6 , 271-277.

CDC Cost Study (1997) Multi-center pilot UNHS cost study using 6 hospitals (one each in CO, GA, LA, TN, UT, and VA). Cost estimates based on self-report questionnaires with site visits to 4 of 6 sites. Standardized estimates used for equipment and overhead costs. Grosse, S. (September, 1997). The costs and benefits of universal newborn hearing screening . Paper presented to the Joint Committee on Infant Hearing, Alexandria, VA.

Results of CDC Cost Study 3 Hospitals 3 Hospitals Cost category using TEOAE using AABR Staff time $13.04 $10.73 Equipment 0.91 2.63 Supplies 0.51 9.33 Overhead 3.49 3.34 Total Cost $17.96 $26.03 (Range) ($15-$22) ($22-$30) Initial refer rate 8% 2% Screening minutes per child 31.4 42.9 Audiologist minutes per child 17.0 5.4

Financing the Program How much does it really cost? Will insurance pay for newborn hearing screening? Is new born hearing screening cost beneficial? Alternative sources of funding