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Outcomes Research in Children with Hearing Loss
December 12 and 13, 2006
The National Institute on Deafness and Other Communication Disorders/National Institutes of Health (NIDCD/NIH) sponsored a workshop on Outcomes Research in Children with Hearing Loss on December 12 and 13, 2006 in Bethesda, Maryland. The purpose of the workshop was to determine and prioritize research needs and discuss design considerations unique to outcomes research in children with hearing loss. The Office on Disability at the Department on Health and Human Services (DHHS) has initiated a National Initiative to Close the Gaps in Health Care and Educational Services for Infants and Young Children with Hearing Loss. This initiative includes many federal agencies. A report of the meeting between the HHS Constituent Working Group on Hearing Loss in Young Children and Representatives of Federal Agency Partners held on August 14, 2006, included recommendations in three areas: Education, Healthcare, and Research. Within the research recommendations, the first recommendation was to “Fund prospective and longitudinal research related to interventions and outcomes. Include interactions of child, family, cultural, demographic, and geographic factors.”
The purpose of the NIDCD Workshop on Outcomes Research in Children with Hearing Loss was to consider this recommendation further, specifically to discuss research needs and design considerations in outcomes research in children with hearing loss. The intent was to consider not only the auditory, speech and linguistic capabilities of children, but all factors influencing “the child as a whole”, such as family, cultural, demographic, and individual child characteristics. The workshop focused specifically on children with degrees of hearing loss ranging from mild to severe. The goal was to define critical issues, to weigh the pros and cons of conceptual and statistical approaches to considering change over time, and to articulate feasible research questions and research needs that could be addressed over the next few years. The workshop was co-chaired by Dr. Amy Donahue from the NIDCD/NIH and Dr. Susan Jerger, University of Texas at Dallas. Fifteen extramural scientists participated on site and one via teleconference. Participants were pre-assigned workshop presentations and encouraged to benefit from pre-meeting discussions (view the full agenda). Two guest speakers from Dept of Education and National Institute on Child Health and Human Development (NIDCH) also participated. The workshop audience included observers from the NIDCD/NIH, NICHD/NIH, Office of the Secretary, Department of Health and Human Services, Department of Education, Agency for Healthcare Research and Quality, Center for Medicare Services, Center for Disease Control, and Maternal and Child Health Bureau. Briefly outlined below are the specific daily sessions. The Workshop Recommendations page offers more detail, including important general and key issues, recommendations for addressing research needs and gaps in information, and other assorted considerations.
The first morning began with an introductory presentation. The background and purpose of the workshop were presented with commentary on the focus on mild to severe hearing loss. An NIDCD fact sheet on current epidemiology estimates of children with mild, moderate, or severe hearing loss was provided. The session then proceeded with six “Current State of Knowledge” lectures as related to children with hearing loss: outcomes research, academic achievements and literacy, psychosocial factors on child development and word learning, perceptual processing, language, and speech production and recognition. Brief presentations were made on current NIDCD and NICHD studies relevant to outcomes in children with hearing loss. The next session focused on potential research opportunities utilizing existing early childhood databases supported by the Department of Education.
In the afternoon sessions, presentation topics included research design and analysis when investigating change over time and current state of affairs of newborn hearing screening, follow-up and intervention as related to research capacity and infrastructure. The afternoon concluded with an active discussion session focusing on common features in child study frameworks: family factors, treatment factors, and child characteristics and outcome.
The second morning began with each participant sharing two or three thoughts and reactions to the previous day's discussion based on overnight reflection. The session brought forth both many global, as well as specific, considerations. A formal presentation then followed on practical considerations for multi-site research and strategies for promoting success when difficulties arise. Break-out groups were then formed to develop an agenda for participant discussion in five areas:
- Outcomes Research—General Issues
(Drs. Daly, Hack, Tomblin)
- Outcomes Research—Hearing Loss in Children Design and Child Factors
(Drs. Eisenberg, Thal, Vohr, Yoshinaga-Itano)
- Sources of Variance: Family, Child, Treatment, Social
(Drs. Hebbler, Norton, Wightman)
- Complementary/Additional Research Needs
(Drs. Jerger, Moeller, Niparko)
- Other Considerations
(Drs. Connor, Gravel, Widen)
Each of the five groups then presented their recommendations/suggested actions, during which there was additional group discussion. The workshop adjourned at 1:00 pm.