Historical Perspective Effects of Policy Changes on Universal Newborn Hearing Screening Follow up Lata A. Krishnan, PhD, CCC A Shannon Van Hyfte, AuD, CCC A Purdue University The Joint Committee on Infant Hearing (JCIH) was established in 1969 Representatives from audiology, otolaryngology, pediatrics, and nursing First meeting between ASHA, the American Academy of Ophthalmology and Otolaryngology (AAOO) and the American Academy of Pediatrics (AAP) 2/26/2013 2 JCIH Goals The Committee was charged with a two fold responsibility: To make recommendations concerning the early identification of children with, or at risk for hearing loss Newborn hearing screening They have since published 7 position statements with increasing depth and detail on the topic JCIH 1971 Position Statement The committee's first statement was one page: Mass hearing screening could not be justified at that time because there were no appropriate test procedures Encouraged ongoing research and acknowledged the need to detect hearing loss early in life 2/26/2013 3 2/26/2013 4 JCIH 1973 Position Statement Delineated the first high risk factors for hearing loss and stated: Infants at risk should be identified by means of history and physical examination Even if hearing appears to be normal, infants in this category should receive regular hearing evaluations thereafter But no specific procedures recommended JCIH 1982 Position Statement Expanded high risk factors Included evaluation recommendations: Preferably under the supervision of an audiologist Optimally by the age of 3 months, but no later than 6 months Screening to include observation of behavioral or electrophysiologic response to sound (no specific recommendation) Whenever possible, complete diagnosis and begin rehabilitation by the age of 6 months 2/26/2013 5 2/26/2013 6 1
JCIH 1990 Position Statement Further expanded risk factors Screening recommendations: Optimally prior to hospital discharge but no later than 3 months Initial screening should include measurement of the auditory brainstem response (ABR) using stimuli in the speech frequencies (clicks) at 40 dbnhl or lower Early intervention services should be provided in accordance with Public Law 99 457 Public Law (PL) 99 457 Passed in October 1986 Federal law that expands services for preschool children from three to five years old who need special education PL 99 457 amends and becomes a part of PL 94 142 (Individuals with Disabilities Education Act) which was passed in 1975 2/26/2013 7 2/26/2013 8 1993: NIDCD The National Institute on Deafness and other Communication Disorders (NIDCD) of the National Institutes of Health (NIH) Consensus Statement on Early Identification of Hearing Impairment in Infants and Young Children All infants admitted to the NICU should be screened before hospital discharge Universal screening should be implemented for all infants within the first 3 months of life JCIH 1994 Position Statement JCIH endorsed universal detection of hearing loss in newborns and infants All infants with hearing loss be identified before 3 months of age and receive intervention by 6 months Recommended ABR or OAE measures Full evaluation process should be completed within 45 days of referral Consider: State and national database Tracking system 2/26/2013 9 2/26/2013 10 The Case for Universal Screening Prevalence of newborn and infant hearing loss is estimated to be 1.5 6 / 1000 live births (Watkin et al., 1991, Parving, 1993, White and Behrens, 1993) Risk factor screening only identifies 50% of infants with hearing loss (Pappas, 1983, Eissman et al., 1987, Mauk et al., 1991) More than 90% of infants with hearing loss have parents with normal hearing Reliable, efficient and inexpensive test procedures are now available to assess infants The Case for Screening early Yoshinaga Itano et al., (1995, 1998): Intervention before 6 months results in normal cognitive and linguistic development After 6 months, scores are significantly lower 2/26/2013 11 2/26/2013 12 2
JCIH 2000 Position Statement Delineated 8 principles for effective EHDI systems All infants have access to hearing screening using a physiologic measure Begin evaluation before age of 3 months Receive services before age of 6 months All infants who pass but have risk indicators receive ongoing monitoring Principles Guarantee infant and family rights via informed choice, decision making and consent Privacy of screening and evaluation records to be maintained Information systems used to measure and report effectiveness of EHDI services EHDI programs to provide data to monitor quality and demonstrate compliance 2/26/2013 13 2/26/2013 14 JCIH 2007 Position Statement Definition of targeted hearing loss expanded: From congenital bilateral and unilateral sensory or permanent conductive HL to include Neural hearing loss (auditory neuropathy/dyssynchrony) in infants admitted to the NICU > 5 days Separate protocols therefore recommended for NICU and well baby nurseries NICU babies >5 days are to have ABR included as part of their screen so that neural HL will not be missed JCIH 2007 For families who elect amplification, infants diagnosed with permanent hearing loss should be fitted with amplification within one month of diagnosis Both home based and center based options should be offered as appropriate interventions. 2/26/2013 15 2/26/2013 16 JCIH 2007 All families should be offered a genetics consultation Every infant with a confirmed HL should have at least one exam by an ophthalmologist experienced in evaluating infants. UNHS Legislation in Indiana House Bill 1410 passed in 1999 Full implementation by July 1, 2000 Requires screening of all babies: Every infant shall be given a physiologic hearing screening examination at the earliest feasible time Infant is exempt only if parent objects in writing for reasons pertaining to religious beliefs 2/26/2013 17 2/26/2013 18 3
Status in Indiana: 2010 82, 702 infants screened >97% of infants are receiving hearing screenings Benchmark = 95% 2,170 referred 2.6% referral rate Benchmark = 4% 134 infants identified with hearing loss 84 of 134 (67%) diagnosed by 3 months age Benchmark = 90% Prevalence per 1000 = 1.6% Status in Indiana: 2010 17% lost to follow up/documentation Nationwide loss to follow up = 39% 93 of 134 (69%) infants with hearing loss enrolled in early intervention 46 of 134 (49.5%) enrolled by age 6 months Benchmark = 90% 2/26/2013 19 Retrieved from CDC website 2/26/2013 20 Retrieved from CDC website Level One and Two Facilities Level One: 31 facilities Have the recommended equipment to provide comprehensive diagnostic audiology services for newborns and young children Level Two: 6 facilities Also provide comprehensive assessment, but are without one piece of the recommended equipment 2/26/2013 21 From IN EHDI Previous IN Policies Fail screening at hospital Hospital refers to FS FS refers to Clinic Report to EHDI 2/26/2013 22 Previous Purdue Policies FS refers to Clinic Clinic schedules appointment NBHS Follow up at PU: 2005 2007 Needs additional testing Normal Conductive component Suspected SNHL; schedule retest Clinic refers to physician Parents call back for retest 2/26/2013 23 4
Demographics Results: Date of birth date FS referral received at Clinic N = 143 127 full term typical infants 10 premature infants/nicu graduates 4 syndrome 2 cleft lip/palate Urban / Rural # of infants Percentage Urbanized area 80 58% Urban cluster 31 22% Rural 28 20% Physician Non- Hispanic Hispanic Private physician 106 9 87% / 53% Community Clinic 13 7 11% / 41% Unknown 3 1 2% / 6% 2/26/2013 25 Range: 2 days 7 months (28 weeks) for full term infants 6 24 weeks for premature infants Average: 4.6 weeks for full term infants 13.6 weeks for premature infants 2/26/2013 Date of discharge from hospital unknown 26 Results: Date referral received date of appointment Results: Age at Initial Evaluation Range: 2 days 13 weeks never Average: 4.3 weeks 2/26/2013 27 For full term infants: Age range = 1 week 7 months Average age = 8.6 weeks For premature infants: Age range = 6 26 weeks 2/26/2013 Average age = 18 weeks 28 Results: Initial Diagnostic Results: Follow up Diagnostic 71%: normal hearing Includes 6% with normal hearing but flat tympanograms: no follow up information available 4%: SNHL 2/26/2013 29 25%: likely conductive hearing loss/need further evaluation 22% returned and had normal results at second appointment 20% returned and still had at least one flat tympanogram 57% lost to follow up 2/26/2013 30 5
Results: HA Fitting Change in Policies Infant Identified Confirmed HA fitting Reasons for delay EI services Update 1 8 weeks 12 weeks 10 mo. At least 6 calls to FS 13 mo. Limited At 18 mo.: progress, Bilateral 60dB Bilateral and mother via interpreter to referred for CI, mother does not ABR thresholds severe to explain issues to mother want to consider at this time profound 8 weeks 14 mo. ENT referred for sedated At age 2: received CI, moved to 2 7 weeks 15 mo. Bilateral moderate Test, cancelled due to OM (private) Illinois, Significantly increased L - 60dB ABR R profound Completed antibiotics EI services, enrolled in oral 50 thresholds Received tubes program, doing well Sedated test at age 8 mo. Family trip to home country Unknown Unknown Cancelled reassessment, At 9 mo: letter from otologist 3 9 weeks Unknown Bilateral at another Went to another clinic limited progress with HA 70dB ABR clinic NR to ABR in OR thresholds referred for CI consultation October 2010: FS funding cut EHDI recommendations changed Purdue re evaluated their procedures 4 5 weeks 9 mo. at 9 mo. Phone disconnected 15 mo. At age 2:6: limited progress, Bilateral another clinic NR to VRA Difficulty contacting family (PT since received CI, Also has cognitive NR ABR Insurance issues 6 mo.) impairment 5 6 weeks Unknown Unknown Cancelled reassessment Unknown Infant's brother had died due to Bilateral liver/neurological problem 70 db Concern infant may have the Wave I only same, going to see a neurologist HF OAE present 2/26/2013 (AN) 31 2/26/2013 32 Current IN Policies Current Purdue Policies Fail screening at hospital Hospital schedules appointment with clinic before discharge Hospital refers to Clinic Report to EHDI Normal Needs additional assessment (CHL or SNHL); schedule retest before leaving clinic 2/26/2013 33 2/26/2013 34 Current Data Current data will be shared regarding the effects of these changes in policies and procedures Acknowledgements Many thanks are due to AuD students for gathering the data presented here Allison Witte Sadie Vojak Andrea Edgerton Megan Lyons And thanks to all the families who bring their infants to our Clinic 2/26/2013 35 2/26/2013 36 6