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of. Evaluation Utah’s Early Hearing Detection and Intervention Program. Karl R. White, PhD National Center for Hearing Assessment and Management Utah State University www.infanthearing.org. The Status of Early Hearing Detection and Intervention in the United States. Karl R. White, PhD

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  1. of Evaluation Utah’s Early Hearing Detection and Intervention Program Karl R. White, PhD National Center for Hearing Assessment and Management Utah State University www.infanthearing.org

  2. The Status of Early Hearing Detection and Intervention in the United States Karl R. White, PhD National Center for Hearing Assessment and Management Utah State University www.infanthearing.org

  3. Data Collection(June / July 2002) • Questionnaires completed by : • 35 of 42 hospitals • 86 physicians • 171 parents of babies who: • passed the inpatient screen (n=84) • referred on inpatient and passed outpatient (n=66) • referred on both inpatient and outpatient (n=21) • Analysis of HI*TRACK for 1999, 2000, and 1st 6 months of 2001 • Site visits to 4 hospitals

  4. Evaluation Results for…. • Universal Newborn Hearing Screening • Appropriate and Timely Diagnosis of the Hearing Loss • Prompt Enrollment in Appropriate Early Intervention • A Medical Home for all Newborns • Culturally Competent Family Support • Effective Tracking and Follow-up

  5. Newborn Hearing Screening • All Utah hospitals have universal newborn hearing screening programs. • Hospitals screen 98% of all live births (mostly by health care assistants, LPN’s, or nurses) • Only about 88% of babies pass screening prior to hospital discharge (little improvement in last 3 years) • 25% of physicians think that less than 60% of babies in Utah are screened.

  6. Newborn Hearing Screening (continued) • Only 54% of newborn hearing screening coordinators have some time dedicated specifically to the hearing screening program. • Less than 70% of babies who need outpatient screens complete them (little improvement in last 3 years)

  7. Efficiency of Early Hearing Detection and Intervention in Utah 1999 2000 2001(6 mos) (n=43,547) (n=46,771) (n=23,307) Inpatient Refer Rates (state average) 85.2% 85.5% 87.5% 10 most effective hospitals 92.8% 93.4% 93.7% 10 least effective hospitals 70.7% 63.4% 74.4% Outpatient completion (state average) 70.1% 67.1% 68.3% 10 most effective hospitals 94.5% 95.9% 94.7% 10 least effective hospitals 45.3% 52.9% 58.08% Reported Completion of Diagnostic 133 of 357 165 of 380 41 of 110* Evaluations (state average) 37.3% 43.4% 40% % of babies who complete Diagnostic 33 of 133 65 of 165 12 of 41* Eval & have permanent hearing loss 24.8% 39.4% 29.3% Number of babies still “in process” 224 215 69 *only 3 months worth of data

  8. Diagnostic Evaluations Should be Completed by 3 Months of Age • In an office visit with a baby who didn’t pass the final screening test, 90% of physicians say they refer for a diagnostic evaluation ASAP. • 21% of physicians think that definitive hearing tests can’t be done until a baby is 3 or more months old.

  9. Complete Diagnostic Evaluations by 3 Months of Age (continued) • Many programs (20%) do no follow-up after referring to the physician • For babies who do not pass the final screening test, only about half of parents are given names of audiologists or referred to their physician.

  10. Enrolled in Appropriate Intervention by 6 Months of Age • Only 63% of programs keep track of whether babies with hearing loss are enrolled in Early Intervention programs • Many program coordinators don’t know what EI options are available • 48% of physicians don’t realize babies can be fit with hearing aids before 6 months of age

  11. All Newborns Should Have a Medical Home • All physicians were aware that their hospital had a UNHS program and thought it was valuable • Most program coordinators report that they know who the primary care physician is for babies who do not pass • Only 37% of physicians think their hospital does a good job of educating physicians about EHDI programs and most would like more information

  12. Babies Diagnosed with Hearing Loss Are Not Referred to Some Medical Specialists As Often As Desired Assume a newborn for whom you are caring is diagnosed with a moderate to profound bilateral hearing loss. If no other indications are present, would you refer the baby for a(n): Always or Often Ophthalmological evaluation 21.6% Genetic evaluation 38.2% Otolaryngological evaluation 94.0%

  13. Families Should be Provided with Culturally Competent Services • Over 90% of parents “glad hearing screening is done” at their hospital, and “confident the hearing tests were correct” • Families who remember receiving written information about the EHDI program, think it is understandable, attractive, and the right amount of detail • 95%+ of parents whose baby didn’t pass, reported they knew “what to do next” • 85% of parents who had questions reported that they were answered well

  14. After all hearing tests were completed, how did you feel? Strongly Agree or Agree Worried about my baby’s hearing 11% Confused about the results of screening tests 10% Glad hearing screening is done at this hospital 91% Confident the hearing tests were correct 91% Frustrated by how long it took to get results 13% Happy with the professional way screening was done 86% Confident about what I needed to do next 88%

  15. If the analysis is limited to those whose babies did not pass the inpatient or outpatient screen After all hearing tests were completed, how did you feel? Strongly Agree or Agree total group subgroup Worried about my baby’s hearing 11% 24% Confused about the results of screening tests 10% 24% Glad hearing screening is done at this hospital 91% 70% Confident the hearing tests were correct 91% 70% Frustrated by how long it took to get results 13% 28% Happy with the professional way screening was done 86% 76% Confident about what I needed to do next 88% 56%

  16. Families Should be Provided with Culturally Competent Services (continued) • Only 49% remember being given written information about newborn hearing screening- - - many would have liked more • Over half didn’t know their hospital had a newborn hearing screening program before they checked in • Many programs don’t have materials in Spanish despite large Spanish speaking population • Parents whose babies require diagnostic evaluations: • 34% say “paying for the tests was difficult” • 32% agree the “experience was scary and confusing” • 17% say they “needed help, but didn’t know where to get it”

  17. Effective Tracking and Follow-up • Most people think HI*TRACK is very useful, but many are unaware of many valuable features • 25% to 50% of hospitals don’t check to see if babies who don’t pass screening receive a diagnostic evaluation. • Program coordinators report that 85% of babies come back for outpatient screening, but only 68% really do

  18. Support from State Department of Health • Past help has been viewed as extremely postive, especially: • Promoting UNHS • Developing educational materials • Communicating with parents and physicians • Connecting referred babies to diagnostic evaluations • Hospitals would like more assistance • Financing the cost of screening • Data management and tracking

  19. Conclusions • Much progress has been made and a solid foundation is in place for developing an exemplary program • There are excellent models in the state for each component of EHDI, but only a few programs have put it all together • Parents and physicians are very supportive of EHDI programs • All stakeholders need better information about resources, benefits and rational for EHDI programs • High refer rates and many babies lost for tracking and follow-up are serious problems which need to be resolved

  20. Implementing Effective EHDI Programs out Then a miracle occurs Start Good work, but I think we might need just a little more detail right here.

  21. Recommendations • State Department of Health should take the lead in: • Continuing to Prepare educational materials for parents (English and Spanish) and physicians and make them available to hospital programs • Helping hospitals implement HI*TRACK and assisting with follow-up • Continuing the excellent training and support they have provided to hospitals

  22. Recommendations • Hospitals should: • Be more proactive about following up with babies who do not pass the inpatient and/or outpatient screening • Reduce inpatient refer rates • Substantially improve outpatient completion rates • Substantially improve reporting and completion rates for diagnostic evaluations

  23. Recommendations • Physicians need to: • Be better informed about the benefits and capabilities of early hearing detection and intervention • Be more involved in making sure parents get the follow-up and services they need • Do a better job of referring babies with diagnosed hearing loss for opthamalogical and genetic evaluations.

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