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An Update Judith Gravel, PhD Chair, JCIH The Children’s Hospital of Philadelphia Member Organizations; Current Representatives • American Academy of Audiology – Alison Grimes; Christie Yoshinaga-Itano • American Academy of Otolaryngology Head & Neck Surgery – Patrick Brookhouser; Stephen Epstein • American Academy of Pediatrics – Betty Vohr; Albert Mehl Member Organizations; Current Representatives • American Speech-Language-Hearing Association – Judy Gravel; Jack Roush • Council for the Education of the Deaf – Beth Benedict; Cynthia Ashby • Directors of Speech & Hearing Programs in State Health and Welfare Agencies – Linda Pippins; David Savage JCIH Documents • 1970 – National Joint Committee on Newborn Hearing Screening formed • 1972 – Joint Committee on Newborn Hearing Screening Supplement – HRR • 1982 – Joint Committee on Infant Hearing (JCIH) Statement • 1990 –JCIH Position Statement • 1994 –JCIH 1994 Position Statement: detection of HL by 3 months of age, intervention by 6 months Year 2000 Position Statement Principles and Guidelines for EHDI Programs JCIH 2000 Components of an EHDI Program Hearing screening: 1 month Confirmation of hearing loss: 3 months Intervention: 6 months (enrollment in early intervention program) JCIH 2000 Components of an EHDI Program Multi-disciplinary team approach Family-centered, seamless, quality services Information systems for tracking & follow-up The Joint Committee on Infant Hearing (JCIH) is recognized both nationally and internationally for its role in shaping public health policy with regard to early hearing detection and intervention (EHDI) programs. As such, position statements and guidelines have addressed new and emerging issues in EHDI Since publication of JCIH 2000: • Data and experiences have become available that impact practice • Several issues have need to be readdressed • New data have become available • All have resulted in deliberation and work by the JCIH over the last five years, ultimately leading to the decision to develop JCIH 2005 Survey of State EHDI Officials White 2003; 2004 “Shortage of experienced pediatric audiologists for assessment and hearing aid fitting” obstacle to quality EHDI programs – 2001: greater concern than 1998 – 2004: 2nd most serious obstacle Rankings: 13 Obstacles to Quality EHDI Programs White 2004 Documents Currently Available on Pediatric Audiology Services • Pediatric Working Group 1996 • AAA Pediatric Amplification Protocol 2003 • ASHA 0-5 year Guidelines 2004 • AAA – in progress 2005 • JCIH 2000 JCIH 2000 Personnel Considerations Provided broad suggestions regarding the assessment & management procedures and knowledge and skills needed by professionals providing services to infants and young children JCIH 2000 Audiologic Evaluation: birth – 5 months • Child & family history • Electrophysiologic threshold measure • EOAE • Measurement of middle ear function JCIH 2000 Audiologic Evaluation: 6 – 36 months • • • • • • • • Child & family history Behavioral audiometry EOAE Acoustic Immittance Speech perception measures Parental report Screen communication milestones ‘Cross-check’ with ABR JCIH 2000 Audiologic Habilitation: Amplification • Prescriptive procedure & real ear measurement • Verification & Validation • Complementary or alternative sensory technology (FM; CI) • Long-term monitoring Delineating a Center for Infant Audiology Service excellence and expertise; Disseminating thos recommendation to State EHDI Coordinators, Early Intervention officials, professionals, and families (Role for JCIH) versus Credentialing of Audiologists who provide infant audiology services (Role of professional organizations) • Contract from Maternal and Child Health Bureau to Boys Town National Research Hospital – Develop and disseminate recommendations on infant audiology services • Initially: survey, review & collection of documents relating to existing pediatric audiology practice in U.S. and other countries (Canada, UK, Australia) – Brandt Culpepper, Townsend University Data Collection - 2003 Culpepper • Survey of State EHDI systems • Web searches for additional resources • Compiled & Reviewed national & international policies, guidelines, and recommendations States with List of Infant Audiology Service Providers Culpepper 2003 Yes Pending No American Samoa Commonwealth N. Mariana Is. Guam Puerto Rico Virgin Islands States with Infant Hearing Assessment Guidelines Culpepper 2003 Mandatory Recommended Pending None developed American Samoa Commonwealth N. Mariana Is. Guam Puerto Rico Virgin Islands States with Infant Amplification Guidelines Culpepper 2003 Mandatory Existing Pending/Draft No known document American Samoa Commonwealth N. Mariana Is. Guam Puerto Rico Virgin Islands States with ‘Credentials’ Recognizing Pediatric Audiologists Culpepper 2003 N=56 Yes Pending No American Samoa Commonwealth N. Mariana Is. Guam Puerto Rico Virgin Islands MCHB Working Group on Infant Audiology Services • Patrick Brookhouser • Barbara ConeWesson • Brandt Culpepper • Judy Gravel • Michael Gorga • Mary Pat Moeller • Linda Pippins •Jack Roush •Richard Seewald •Yvonne Sininger •Patricia Stelmachowicz •Anne Marie Tharpe •Judy Widen •Christie Yoshinaga-Itano MCHB Working Group on Infant Audiology Services • Conducted face-to-face meeting • Reviewed materials • Drafted document on assessment, management and follow-up of infants with hearing loss & their families MCHB Working Group: Key Principles of Infant Audiology Services • Shared goal of seamless service provision within family centered context • Knowledge of entire pediatric hearing health care service delivery system • Audiologic services delivered within context of the EHDI system National EHDI Goals • Goal 1: screening by 1 month • Goal 2: screen positive infants receive diagnostic audiologic assessment before 3 months • Goal 3: infants with hearing loss begin appropriate early intervention before 6 months National EHDI Goals • Goal 4: infants & children with late onset, progressive, or acquired hearing loss receive early ID • Goal 5: infants with hearing loss will have a medical home • Goal 6: States will have complete EHDI Tracking & Surveillance System to minimize loss to follow-up. • Goal 7: States will have comprehensive system that monitors and evaluates progress towards the EHDI Goals & Objectives. MCHB Working Group: Key Principles of Infant Audiology Services • Personnel with experience in assessment & management of infants and children with hearing loss • Commensurate knowledge & test equipment necessary for use with current pediatric hearing assessment methods & hearing aid selection and evaluation procedures MCHB Working Group: Key Principles of Infant Audiology Services • Audiologic diagnostic process is ongoing: frequent follow-up visits necessary • Timely provision of services, without long delays between tests MCHB Working Group: Key Principles of Infant Audiology Services • Hearing aid fitting, early intervention & referral for medical evaluation proceed as soon as hearing loss is confirmed • Complete medical evaluation & child and family history are part of diagnostic process MCHB Working Group: Key Principles of Infant Audiology Services • Changing ear canal acoustics: impact on assessment & management • Otitis Media with Effusion (OME) • Sedation MCHB Working Group: Components of Hearing Assessment to Confirm Hearing Loss by 3 months of age • • • • • • • • Case/family history Otoscopic inspection FS air- & bone-conduction ABR thresholds High-level click-ABR EOAE Tympanometry (1 kHz probe freq) & AMEMR Observations of auditory behaviors Counseling family MCHB Working Group: Facilities & Equipment Specific to Electrophysiologic Testing of Infants • Electrophysiologic instrument – Capable of frequency-specific air- and bone-conducted assessment – Option for using contralateral masking and ipsilateral notched-noise masking MCHB Working Group: Facilities & Equipment Specific to Electrophysiologic Testing of Infants • Diagnostic OAE instrument – providing more that pass-refer outcome – variable stimulus type, frequency, level – flexible response-analysis techniques • Acoustic immittance equipment – 1 kHz and 226 Hz probe frequency options – Contralateral & ipsilateral AMEMR options MCHB Working Group: Facilities for Behavioral Audiologic Diagnostic Assessment • Conditioned response procedures (VRA, TROCA, CPA) • Sound treated test booth • Audiometer with insert earphones • Bone vibrator with pediatric headband • Sound field capability • Multiple toy reinforcers/cabinets and/or video reinforcement system • EOAE • Real-ear measurement system • Acoustic immittance system • Sound level meter MCHB Working Group: Facilities for Amplification Selection & Fitting • Audiometric assessment/acoustic immittance • Instrumentation to perform electroacoustic analysis & real ear measures with test signals appropriate for use with current technology • Computer system allowing use of fitting software for current technology MCHB Working Group: Facilities for Amplification Selection & Fitting • Consignment hearing aids appropriate for infants & toddlers • Equipment & supplies: high-quality ear mold impressions in infant ears • Appropriate test environment • Loaner hearing aid program • Hearing Aid Orientation kits Based on MCHB Working Group document: JCIH Stratification System for Quality Infant Audiology Services Levels of Service – MA Model (infants & children required to be referred to DPH-approved facilities) • Level 1 – serve children birth to 3 years – Sedated & non-sedated ABR – Other traditional pediatric audiologic testing • Level 2 – serve children birth to 3 years – non-sedated ABR – Other traditional pediatric audiologic testing • Level 3 – serve children 6 months (CA) to 3 years – Other traditional pediatric audiologic testing including, but not limited to sound field testing, play audiometry, tympanometry, and OAE, Development and Dissemination of Materials on JCIH QIAS Stratification System • Families • State EHDI Coordinators • Primary Care Providers Terry Davis, LSU Medical Center – healthcare literacy; MCHB contract In Development: JCIH 2005 Position Statement and Guidelines JCIH 2005 Position Statement and Guidelines Maintain general framework of JCIH 2000 • Provide interval history 2000-2005 – Recognize federal agencies in the development of EHDI systems • Review relevant literature published in the interval & update JCIH 2005 Position Statement and Guidelines Update, Expand & Revise Principles: • Prevention • Family centered EHDI process • 1-3-6 maintained • Timely access to high-quality technology; reimbursed JCIH 2005 Position Statement and Guidelines Update, Expand & Revise Principles: • Simplified, integrated point of entry to early intervention system • Professionals: pediatric-specific & discipline-appropriate knowledge and skills • Monitoring for hearing loss & surveillance efforts JCIH 2005 Position Statement and Guidelines Update, Expand & Revise Principles: • Information for families; professional continuing and pre-professional education JCIH 2005 Position Statement and Guidelines Update, Expand & Revise Principles: • Information systems – electronic health records • Reimbursement for professional services JCIH 2005 Position Statement and Guidelines 2005 overarching theme: Follow-up • Highlight challenges impacting followup and tracking of infants after screening • Offer recommendations JCIH 2005 Position Statement and Guidelines Issues Related to Follow-up: • States sharing information on individual children • Assignment of follow-up responsibilities at each step of the EHDI process JCIH 2005 Position Statement and Guidelines Issues Related to Follow-up: • Organized surveillance efforts after the newborn period • Screening of communication milestones JCIH 2005 Position Statement and Guidelines Issues Related to Follow-up: • Targeting special populations for intense follow-up: – Multiple disabilities – Unilateral hearing loss – Mixed hearing loss: breaking cycle of delayed confirmatory tests – Possible candidates for CI JCIH 2005 Position Statement and Guidelines Revisions in Existing Sections: • Screening • Auditory neuropathy section • Audiologic Habilitation section • Early Intervention section • Surveillance section JCIH 2005 Position Statement and Guidelines • Revision of surveillance section: “Risk Indicators for Progressive or DelayedOnset Sensorineural Hearing Loss and/or Conductive Hearing Loss” – Audiologic monitoring of infants with risk indicators who pass NHS – Every 6 months to age 3 years • Concept Paper 2003: White (NCHAM) • Questioned the desirability of the JCIH 2000 surveillance recommendation • Concluded that: – little evidence regarding late-onset hearing loss in infants with risk indicators – practice of gathering risk factors in neonatal period was costly & time consuming and likely to be missed – Feasibility of audiologic evaluation of infants 2 x year – ? Wise use of limited resources In 2003, JCIH worked on revision of surveillance section and considered: • Medical Home role: – ID risk indicators regardless of screening pass – Query parent at each visit regarding communication: refer on parent concern – Refer any child with diagnosed disability – Routine screening of communication development; refer any child with delays • Testing hearing of every child enrolled in the Early Intervention System JCIH 2005 Position Statement and Guidelines Revisions in Existing Sections: • Roles & Responsibilities: will now address transitioning from birth to 3 programs to 3 to 5 programs • Institution and agencies: to include Federal commitment to pre-professional and professional training JCIH 2005 Position Statement and Guidelines Other Issues/Topics: • Genetics & genetic counseling/evaluation in the EHDI context www.jcih.org