NIDCD Grantees Investigating Long Term Outcomes of EHDI Programs Amy M. Donahue, Ph.D. NIDCD.

NIDCD Grantees Investigating Long Term Outcomes of EHDI Programs

Amy M. Donahue, Ph.D.

NIDCD

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 or if you will be discussing unapproved or "off-label" uses of pharmaceuticals or devices.

National Institute on Deafness and National Institute on Deafness and Other Communication Disorders Other Communication Disorders

(NIDCD)(NIDCD)and EHDI Researchand EHDI Research

2006 National Early Hearing Detection and 2006 National Early Hearing Detection and Intervention ConferenceIntervention Conference

Amy Donahue, Ph.D. Amy Donahue, Ph.D. NIDCDNIDCD

Much of the biomedical research in the United States Much of the biomedical research in the United States is supported by the Federal Government, primarily the is supported by the Federal Government, primarily the National Institutes of Health (NIH)National Institutes of Health (NIH)

NIDCD Mission and NIDCD Mission and Program ActivitiesProgram Activities

Biomedical and Behavioral ResearchBiomedical and Behavioral Research

Hearing, Balance, Smell, Taste, Speech, Hearing, Balance, Smell, Taste, Speech, Voice and LanguageVoice and Language

Research Grants and Contracts to Research Grants and Contracts to Universities and Small Businesses Universities and Small Businesses

Basic, Translational, and Clinical Basic, Translational, and Clinical

Technology DevelopmentTechnology Development

NIDCD Budget & Success RateNIDCD Budget & Success Rate

FYFY 2000 2000 20012001 20022002 20032003 20042004 2005 20062005 2006NIH budget doubling NIH budget doubling

$(M) $(M) 264 264 300300 341341 370370 382382 394394 397397

% % 15.0 15.0 14.0 14.0 13.613.6 8.48.4 3.23.2 3.23.2 -0.5-0.5IncreaseIncrease

R01R01 4040 4343 4141 4242 3636 2727 ? ? Success Rate Success Rate (Awarded/Reviewed)(Awarded/Reviewed)

NIDCD FY 2005 Budget Distribution by Program

HearingHearing 51 %51 %

BalanceBalance 77

Smell Smell 1212

TasteTaste 55

VoiceVoice 66

SpeechSpeech 1010

Language Language 99

NIDCD 2005 Success RatesNIDCD 2005 Success RatesSuccessSuccess

MechanismMechanism ReviewedReviewed AwardedAwarded Rate Rate (%)(%)

R01R01 514514 141141 27.427.4

R03 (Small)R03 (Small) 9595 2929 30.530.5

R15 (AREA)R15 (AREA) 1818 66 33.333.3

R21 (Exp/dev)R21 (Exp/dev) 121121 1919 15.715.7

New Inv R01New Inv R01 8888 2424 27.327.3

NIDCD and EHDINIDCD and EHDI

Active NIDCD investigator-initiated research grants in Active NIDCD investigator-initiated research grants in many areas relating to HL in infants and childrenmany areas relating to HL in infants and children

Set-aside money to fund special initiatives focusing on Set-aside money to fund special initiatives focusing on urgently needed information (over $6 M in recent years)urgently needed information (over $6 M in recent years)

Audiology, speech pathology, early intervention and Audiology, speech pathology, early intervention and medical communities are actively engaged medical communities are actively engaged

An adequate pool of both funding dollars and trained An adequate pool of both funding dollars and trained researchers is required to address future needs researchers is required to address future needs

Often takes years to get answers, requiring patience Often takes years to get answers, requiring patience and perseverance… and perseverance…

EHDI-Related ResearchEHDI-Related Research(Investigator-Initiated) (Investigator-Initiated)

Cochlear Implants Cochlear Implants

Hearing AidsHearing Aids

Normal Auditory DevelopmentNormal Auditory Development

Auditory, Speech and Language Auditory, Speech and Language Development after Hearing LossDevelopment after Hearing Loss

Device Development- Diagnostic and Device Development- Diagnostic and RehabilitationRehabilitation

EHDI-Related ResearchEHDI-Related Research(Investigator-Initiated) (Investigator-Initiated)

Behavioral Assessment and Behavioral Assessment and Management Test DevelopmentManagement Test Development

Speech and Lang Development in Speech and Lang Development in Infants and ChildrenInfants and Children

Acquisition of American Sign LangAcquisition of American Sign Lang

Genetics and Hearing LossGenetics and Hearing Loss

Special EDHI InitiativesSpecial EDHI Initiatives

Value and seek dialogue with scientific Value and seek dialogue with scientific community and federal partners for priority community and federal partners for priority settingsetting

Set aside money to develop and support Set aside money to develop and support special initiatives to obtain urgently needed special initiatives to obtain urgently needed informationinformation

Seeking answers to the changing issues Seeking answers to the changing issues and questions before us and questions before us

Intervention Strategies Intervention Strategies Following Early Identification Following Early Identification

of Hearing Impairmentof Hearing Impairment

$1.5M $1.5M and funded four applications Auditory Development in Early Amplified

Children (UCLA) Optimizing Amplification for Infants and

Young Children with Hearing Loss (Boys Town)

Effect of Very Early Cochlear Implantation (Washington University)

Improving Speech Intervention for Deaf Children (University Minnesota)(University Minnesota)

Genetic Testing and the Clinical Genetic Testing and the Clinical Management of Infants with Management of Infants with

Nonsyndromic Hearing ImpairmentNonsyndromic Hearing Impairment

$1.5M and funded four applications$1.5M and funded four applications

How will genetic testing be integrated into How will genetic testing be integrated into the clinical management of the individual the clinical management of the individual and utilized by the familyand utilized by the family

What are the attitudes about genetic What are the attitudes about genetic testing or the level of interest testing or the level of interest

Unique challenges for a condition not Unique challenges for a condition not considered to be disabling or undesirable considered to be disabling or undesirable by everyone by everyone

Genetic Testing and the Clinical Genetic Testing and the Clinical Management of Infants with Management of Infants with Nonsyndromic Nonsyndromic Hearing Impairment

Genetics and Pediatric Nonsyndromic Hearing Loss (BU/Harvard)

Outcomes of Genetic Testing for Hearing Impairment (U PN)

Connexin 26 Testing in Infants (UCLA) Genetics and Mild Hearing Loss in

Schoolage Children (Univ Australia)

Auditory/Perceptual Processing in Auditory/Perceptual Processing in Infants with Hearing Loss: Issues in Infants with Hearing Loss: Issues in Assessment and ManagementAssessment and Management

2M dollars and funded 6 applications2M dollars and funded 6 applications

Multidisciplinary researchMultidisciplinary research

Understand how early hearing loss Understand how early hearing loss affects the whole child: sign and/or affects the whole child: sign and/or spoken language, cognition, learning, spoken language, cognition, learning, psychosocial developmentpsychosocial development

Develop new tools and Develop new tools and methodologies for assessment and methodologies for assessment and managementmanagement

Auditory/Perceptual Processing in Infants with Hearing Loss: Issues in Assessment and Management

Word Learning in Infants with HL Word Learning in Infants with HL (Boystown)(Boystown)

Early Development of Children with HL Early Development of Children with HL Loss (Ohio State)Loss (Ohio State)

Assessing Auditory Capacity of HL Children Assessing Auditory Capacity of HL Children (HEI)(HEI)

Central Auditory Development in HL Central Auditory Development in HL Infants (U TX)Infants (U TX)

Speech Perception by Infants after Speech Perception by Infants after Cochlear Implantation (Indiana U)Cochlear Implantation (Indiana U)

Congenital CytomegalovirusCongenital Cytomegalovirus

Approx 40,000 infants year born with CMVApprox 40,000 infants year born with CMV

10- 15% will develop HL, many will have 10- 15% will develop HL, many will have delayed onsetdelayed onset

7-year study to evaluate presence of CMV 7-year study to evaluate presence of CMV and long-term audiologic/otologic outcome and long-term audiologic/otologic outcome and address validity and utility of CMV and address validity and utility of CMV screening in the detection of HI in the screening in the detection of HI in the newborn period and prediction of late-newborn period and prediction of late-onset HL after newborn periodonset HL after newborn period

Congenital CytomegalovirusCongenital Cytomegalovirus

University of Alabama, BirminghamUniversity of Alabama, BirminghamSeven sites- MS, NC, NJ, PA, OH, TX, AL Seven sites- MS, NC, NJ, PA, OH, TX, AL Three Phases:Three Phases:a.a. Protocol developmentProtocol developmentb.b. Determination of best screening Determination of best screening

methodology (saliva or blood drop)methodology (saliva or blood drop)c.c. Testing of 100,000 newborns for CMV and Testing of 100,000 newborns for CMV and

follow-up of positive casesfollow-up of positive cases

Long Term Outcomes: Long Term Outcomes: Childhood Outcomes After Cochlear Childhood Outcomes After Cochlear

Implantation (JHU)Implantation (JHU)

““Whole” Child: cognitive, social and Whole” Child: cognitive, social and behavioral development. behavioral development.

Systematically evaluating the predictive Systematically evaluating the predictive value of variables as they relate to value of variables as they relate to outcomes of oral language acquisition, outcomes of oral language acquisition, speech recognition skills, selective speech recognition skills, selective attention and problem-solving skills, attention and problem-solving skills, behavioral and social development, behavioral and social development, parent-child interactions, and quality-of-parent-child interactions, and quality-of-life measures in children implanted in six life measures in children implanted in six U.S. implant centers. U.S. implant centers.

Long Term Outcomes: Long Term Outcomes: Childhood Outcomes After Cochlear Childhood Outcomes After Cochlear

Implantation (JHU)Implantation (JHU)

Data will contribute to understanding of the factors Data will contribute to understanding of the factors predicting implant-associated language use, predicting implant-associated language use, communication competence in early childhood, communication competence in early childhood, psychosocial development, and the perceived psychosocial development, and the perceived value of early cochlear implantation in light of value of early cochlear implantation in light of associated costs. associated costs.

Conclusions will enable a refined approach to implant Conclusions will enable a refined approach to implant candidacy when considering (re)habilitative candidacy when considering (re)habilitative strategies designed to optimize the development strategies designed to optimize the development of children with severe-to-profound SNHL. of children with severe-to-profound SNHL.

Long Term Outcomes: Long Term Outcomes: Iowa Cochlear Implant CenterIowa Cochlear Implant Center

Clinical outcomes research in 20Clinical outcomes research in 20thth year. year.

Goals include: Goals include:

studying the selection criteria for implantation; studying the selection criteria for implantation;

developing a reliable evaluation strategy including developing a reliable evaluation strategy including accurate assessment of auditory thresholds; accurate assessment of auditory thresholds;

developing signal processing for speech perception and developing signal processing for speech perception and music appreciation; music appreciation;

assessing communication outcomes (speech production, assessing communication outcomes (speech production, language, reading, writing, and music appreciation) of language, reading, writing, and music appreciation) of children using hearing aids and/or implants; and children using hearing aids and/or implants; and

determining the factors that affect the long term benefit of determining the factors that affect the long term benefit of cochlear implants in adults and children.cochlear implants in adults and children.

Long Term Outcomes:Long Term Outcomes:Word Learning in Infants with Word Learning in Infants with

Hearing Loss (Boys Town)Hearing Loss (Boys Town)

Goal is to gain an understanding of the early word-learning Goal is to gain an understanding of the early word-learning processes of children with hearing loss, and to delineate processes of children with hearing loss, and to delineate factors that influence language development. factors that influence language development.

Many hard-of-hearing (HH) children are slower than Many hard-of-hearing (HH) children are slower than normal-hearing (NH) children to develop similar normal-hearing (NH) children to develop similar lexicons, even with early intervention. Sources of early lexicons, even with early intervention. Sources of early delays and individual differences in long-term outcomes delays and individual differences in long-term outcomes in this population are not well understood. in this population are not well understood.

Is early lexical development influenced by complex Is early lexical development influenced by complex interactions of maternal, child, and environmental interactions of maternal, child, and environmental factors.? This study systematically examines the factors factors.? This study systematically examines the factors that influence word learning in HH infants. that influence word learning in HH infants.

Long Term Outcomes:Long Term Outcomes:Word Learning in Infants with Word Learning in Infants with

Hearing Loss (Boys Town)Hearing Loss (Boys Town)Characterize the rate and course of word learning in HH Characterize the rate and course of word learning in HH

children in the context of mother-child interaction, children in the context of mother-child interaction, providing baseline data on word learning in HH children, providing baseline data on word learning in HH children, as well as guidelines for measuring progress and as well as guidelines for measuring progress and adjusting interventions in clinical settings. adjusting interventions in clinical settings.

Word-learning experiments and parent surveys are Word-learning experiments and parent surveys are conducted to determine if HH children are able to learn conducted to determine if HH children are able to learn words from incidental exposure. Explore the role of words from incidental exposure. Explore the role of children's social understanding in vocabulary children's social understanding in vocabulary development, and determine how conversations about development, and determine how conversations about thoughts and feelings influence children's knowledge.thoughts and feelings influence children's knowledge.

Outcome to provide direction for early interventionists in Outcome to provide direction for early interventionists in their efforts to promote nurturing caregiver-child their efforts to promote nurturing caregiver-child interactions. interactions.

Long Term Outcomes:Long Term Outcomes: Assessing Auditory Capacity of HL Assessing Auditory Capacity of HL

Children (HEI)Children (HEI)

There are few clinical measures to assess speech perception abilities in infants as they mature. Better measures are needed for decision-making regarding early intervention. This study focuses on auditory-perceptual development and the emergence of spoken language in the young hearing-impaired child.

Goal: develop and refine new behavioral assessment tools to measure speech perception in children between the ages of 6 months and 5 years. Longitudinal and cross-sectional studies.

Long Term Outcomes:Long Term Outcomes: Assessing Auditory Capacity of HL Assessing Auditory Capacity of HL

Children (HEI)Children (HEI)Aims include:

1) ascertain the extent to which assessment task contributes to variability on measures of speech perception,

2) measure changes in performance over time as a function of chronological age, assessment task, auditory status, and sensory assistance;

3) investigate the relationship between speech recognition and linguistic / cognitive variables in young developing children with hearing loss;

4) to describe and measure the contributions of maternal involvement to performance on tasks of language and speech perception in hearing-impaired young children, and to validate parent report as a tool for assessing language development.

Health Communication Health Communication

Research to investigate methods to inform Research to investigate methods to inform the public and to be used by public health the public and to be used by public health and professional audiences in information and professional audiences in information dissemination.dissemination.

Resources for infants with newly identified Resources for infants with newly identified HL (Boystown, Univ Arkansas, Children’s HL (Boystown, Univ Arkansas, Children’s Hospital Philadelphia)Hospital Philadelphia)

NIDCD NIDCD Office of Health Communication Office of Health Communication

and Public Liaisonand Public Liaison

Communicate NIDCD-supported Communicate NIDCD-supported research to the public, health research to the public, health professionalsprofessionals

Publications, Web site, Publications, Web site, Information ClearinghouseInformation Clearinghouse

Media RelationsMedia Relations

Outreach, Exhibits, ConferencesOutreach, Exhibits, Conferences

Fact Sheets for Parents and Fact Sheets for Parents and Medical ProfessionalsMedical Professionals

Newborn Hearing Screening: Has Your Baby’s Newborn Hearing Screening: Has Your Baby’s Hearing Been Screened? Hearing Been Screened? 32003200

What to Do if Your Baby’s Screening Reveals a What to Do if Your Baby’s Screening Reveals a Possible Hearing Problem Possible Hearing Problem 22502250

When a Newborn Doesn’t Pass the Hearing When a Newborn Doesn’t Pass the Hearing Screening: How Health Professionals Can Screening: How Health Professionals Can Encourage Follow-up Hearing Evaluation for Encourage Follow-up Hearing Evaluation for Newborns Newborns 300300

Communication Considerations for Parents of Communication Considerations for Parents of Deaf and Hard-of-Hearing Children Deaf and Hard-of-Hearing Children 19001900

Annual distribution through the NIDCD Information Annual distribution through the NIDCD Information Clearinghouse: Clearinghouse:

OutreachOutreach

Respond to inquiries at NIDCD Information Respond to inquiries at NIDCD Information ClearinghouseClearinghouse

Disseminate at medical, health, and prevention Disseminate at medical, health, and prevention conferencesconferences

Participation in EHDI activities, conferencesParticipation in EHDI activities, conferences

Media opportunities to promote awareness of Media opportunities to promote awareness of newborn screening, follow-up carenewborn screening, follow-up care

Healthy Hearing 2010 Healthy Hearing 2010 Progress ReviewProgress Review

In 2001, 66% of infants received a hearing In 2001, 66% of infants received a hearing screening before they were one month old. screening before they were one month old. 2010 target: 90% 2010 target: 90%

Of infants who needed follow-up evaluation, 56% Of infants who needed follow-up evaluation, 56% received this service before 3 months of age. received this service before 3 months of age. 2010 target: 70%2010 target: 70%

Of infants who had hearing loss during the follow-up Of infants who had hearing loss during the follow-up evaluation, 57% were enrolled in appropriate evaluation, 57% were enrolled in appropriate intervention before the age of 6 months. intervention before the age of 6 months. 2010 target: 85%2010 target: 85%

NIDCD continues to develop new tools to evaluate NIDCD continues to develop new tools to evaluate and modify intervention programs in newborns.and modify intervention programs in newborns.

Resources & Contact Resources & Contact InformationInformation

Visit NIDCD’s Web site: Visit NIDCD’s Web site: www.nidcd.nih.govwww.nidcd.nih.gov

Research funding opportunities: Research funding opportunities: Dr. Amy Donahue or Dr. Lynn LuethkeDr. Amy Donahue or Dr. Lynn Luethke(301) 402-3458(301) [email protected]@[email protected]@nidcd.nih.gov

Subscribe to NIDCD: updates on research Subscribe to NIDCD: updates on research findings, biannual newsletter findings, biannual newsletter

Resources & Contact Resources & Contact InformationInformation

Visit NIDCD booth in the Exhibit HallVisit NIDCD booth in the Exhibit HallContact: Contact:

Patricia BlessingPatricia BlessingChief, Office of Health Communication and Chief, Office of Health Communication and Public Liaison, NIDCDPublic Liaison, [email protected]@mail.nih.gov