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Third Workshop of the NIDCD
Working Group on the Early Identification of Hearing Impairment
September 19,
2000 Rockville, Maryland
The Third Workshop of the NIDCD
Working Group on Early Identification of Hearing Impairment was held on
September 19, 2000, in Rockville, Maryland. The purpose of the workshop
was to identify critical research needs in the area of early
identification of hearing impairment. The workshop was designed to provide
advice to the NIDCD for identifying research to be supported through the
Federal Government grant and contract processes. Representatives from the
Centers for Disease Control and Prevention, one of NIDCD’s Federal agency
partners supporting the early identification of hearing impairment, were
present. Members of
the Working Group are listed in the Attachment. Amy Donahue, Ph.D.,
Division of Extramural Research, NIDCD, and Judith Gravel, Ph.D., Albert
Einstein College of Medicine, co-chaired the workshop.
The workshop convened at 8:30 a.m. James Battey, Jr., M.D., Ph.D.,
Director, NIDCD, welcomed the attendees. Dr. Donahue then provided the
charge to the workshop. She reminded the Working Group that the process of
screening was the focus of the first workshop of the Working Group, and
the focus of the second workshop was on the issues following neonatal
hearing screening, specifically the diagnostic and intervention
strategies. This workshop was intended to review the entire scope of
issues related to early identification of hearing impairment and to
delineate research priorities.
Each member of the Working Group spoke briefly about what they
considered to be the most pressing research questions. There was
considerable overlap and agreement among the members of the Working Group
on the most urgent issues, needs, and opportunities. The Working Group,
under the direction of Drs. Donahue and Gravel, subsequently formulated
recommendations to the NIDCD regarding the most pressing research
questions in the early identification of hearing impairment. The workshop
was adjourned at 2:30 p.m.
Primary Research Opportunities
- Characterization of auditory/auditory perceptual system capabilities
of infants with hearing loss with the goal of determining
appropriate/optimal habilitative strategies (both technological and
behavioral) leading to the development of optimal communication skills.
- Develop techniques for delineating auditory (sensory) thresholds
and methods for examining auditory perception (speech and
supra-threshold auditory abilities) and multi-modal perceptual
integration.
- Devise methods to determine auditory/linguistic development in
infants with hearing loss (including infants with multiple
disabilities) for comparison to infants with similar
experiences/developmental profiles, as well as to those who hear
normally.
- Examine ways to determine the appropriateness of various types of
technologies and approaches to habilitation, the need for a change in
technology or intervention strategy, and/or candidacy for cochlear
implantation for the individual infant.
- Genetics of hearing loss.
- Determine the genotype and characterize the phenotype of genes
associated with hearing loss in infants.
- Examine the correlation and interaction of genetic information
with audiologic/auditory information.
- Study gene-environment interactions for the purpose of treatment
and prevention of hearing loss.
- Evaluate the use of genetic and other screening methods (e.g.,
CMV) in early identification programs aimed at newborns and infants.
- Determine the role of genetic testing in optimum models of service
delivery (i.e., screening and assessment protocols) and the impact of
genetic screening on diagnosis and follow-up, including
social-emotional effects on families. Ethical, legal, and social
implications of genetic testing should be considered in the context of
unique cultural issues associated with hearing
impairment/deafness.
- Consequences of over-referral.
- Examine over-referral (false-positive outcomes) relative to (a)
the impact on families resulting from anxiety and changes in family
dynamics; (b) costs and risks of unnecessary diagnostics and
treatment; (c) overall medical, health care and societal costs; (d)
family, social-emotional, and cultural effects; (e) perceived
credibility of universal newborn hearing screening (UNHS) programs;
and (f) compounding problems of follow-up.
- Determine methods to reduce over-referral.
- Consider the consequences of false-positives versus the
consequences of missing a hearing loss; that is, compare stresses and
costs of late identification (missed, late onset, progressive) of
hearing loss with those incurred in over-referral.
- Determine the appropriateness of the degree of hearing loss
currently targeted in newborn hearing screening programs; specifically
bilateral hearing loss of mild (30-40 dB HL) degree and unilateral
hearing loss (JCIH, 2000; AAP, 1999).
- Determine the effects of including mild (including high frequency
and unusual configurations) and unilateral hearing loss on the costs
and benefits of UNHS programs.
- Determine the effects of mild (including high frequency and
unusual configurations) and unilateral hearing loss on communication
development and learning.
- Study the stability of hearing loss over time; determine the
prevalence and manner in which hearing loss (bilateral and unilateral)
progresses and/or fluctuates and which children are at highest risk
for such outcomes.
- Examine the impact of otitis media with effusion (OME) on infants
with permanent hearing loss. Determine whether hearing losses
presently targeted for screening in the U.S. need to be
revised.
- Impact of early intervention on outcome.
- Determine how various interventions influence outcome, and how
outcome efficacy should be measured.
- Develop measures to determine whether or not intervention is
"successful".
- Characterize factors that influence intervention outcome (e.g.,
type of intervention, family interaction, family-clinician
interaction, socio-economic status).
- Examine the effects of early use of sign language on later
auditory/oral abilities and psycho-social abilities.
- Determine how early interventions impact the family and infant’s
environment for communication and psycho-social development (including
pre-verbal behaviors).
- With the goal of evaluating and optimizing early intervention
programs for young infants with hearing loss, examine the role of
pre-verbal behaviors in the assessment and development of
communication. Study the effects of early intervention on infants with
multiple disabilities.
- Study the impact of intervention using quality of life measures
(determined from the individual, parent, and the healthcare provider).
- Determine the impact and efficacy of technology (amplification and
cochlear implantation) and communication approach on outcome.
- Examine the ultimate outcomes (e.g., long-term effects,
educational cost savings) of early intervention.
- Diagnostic assessment.
- Examine the efficiency of techniques, particularly for the
diagnosis of infants who are hard-of-hearing. Determine whether
refinements in assessment protocols (measurement techniques) by age
(< 6 months; 6-12 months) would result in more timely and accurate
diagnosis.
- Study the impact of protracted diagnosis on the problem of
follow-up.
- Develop (refine) techniques that can be used accurately by
practitioners with varying levels of skill.
- Develop electrophysiologic, middle ear measurement and behavioral
test techniques that will improve the accuracy and rapidity of the
audiologic assessment.
- Determine appropriate medical, otologic, developmental and genetic
assessment strategies.
- Evaluate the cost effectiveness of diagnostic techniques and
assessment protocols.
- Examine health care delivery and system issues with the goal of
determining methods to resolve the problem of infants who fail to return
for follow-up evaluations (those considered "lost to follow-up").
- Delineate both the barriers to follow-up and the factors that
contribute to successful follow-up.
- Examine the success of follow-up for hearing loss screening
programs in comparison to existing screening initiatives for other
health conditions in newborns.
- Examine issues such as the perceived urgency of a hearing
screening failure and perspectives of parents and physicians about
hearing screening and follow-up.
Other Considerations
- Documentation of the natural history of hearing loss, especially for
progressive, delayed onset or fluctuating hearing loss, as well as for
unusual configurations of hearing loss, with the goal of incorporating
new information into future hearing screening guidelines (e.g., risk
indicators, frequency of follow-up).
- Determination of sensitive periods/sensitive sequences for various
aspects of communication development and factors that influence these
periods/sequences.
- Identification of skills needed by practitioners for the provision
of optimal assessment and management services to infants with hearing
loss and delineation of factors that facilitate and restrict access to
such services.
- Assessment of the impact of screening on the nursery environment
including infection control, baby-handling, and disruption of nursery
routine.
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