This dataset consists of demographic and developmental outcome variables collected on children who are deaf or hard of hearing from 1 month to 5 years, 11 months of age (x̄ = 24 months) with the majority (88%) of the participants between 1 and 36 months of age. Data were collected as part of the Outcomes and Developmental Data Assistance Center for Early Hearing Detection and Intervention (EHDI) Programs (ODDACE) project which was supported by the Centers for Disease Control and Prevention under the Notice of Funding Opportunity #CDC-RFA-DD20-2005 (project period: September 1, 2020, to August 31, 2024). Project goals included expanding public health capacity to gather, analyze, and use intervention and developmental outcome data. A long-term outcome of the ODDACE project was to increase our understanding of factors that impact the language outcomes of young children who are deaf or hard of hearing (DHH).
The ODDACE project established partnerships and data use agreements with 16 early intervention and/or EHDI programs in 14 states. Early interventionists partnered with families to complete a demographic form and one or more developmental assessments about their children. The dataset includes information from 1,949 children. Some children (n = 812) were assessed on a single occasion; others (n = 1,137) participated in the assessment on two or more occasions with approximately 6 months between assessment time points (and up to six assessment intervals). This resulted in a total of 4,159 assessment time points.
The sample includes 1,351 children with bilateral hearing differences and 598 children with unilateral hearing differences. Hearing levels ranged from mild to profound. Additional disabilities thought to impact language development (e.g., cognitive delay, cleft palate, autism spectrum disorder, etc.) were reported for 24% of the sample. For 87% of the families, the primary language of the home was English, with 11% reporting Spanish and 2% reporting “other” as the main language used in the home. Spoken language was the primary mode of communication for 82% of the families (with approximately half of this group reporting very occasional use of sign language); 16% reported using a combination of spoken and sign language and 2% used sign with no spoken language.
Three of the data files in this collection (“Tracking,” “Demographic,” and Audiology”) include descriptive information about the child, the family, and the intervention the child receives. Child variables include: 1) basic demographic information such as sex, ethnicity, race, and presence of additional disabilities, and 2) audiologic variables such as laterality of the hearing difference (unilateral or bilateral), hearing levels, age of identification of the hearing difference, age of acquisition of hearing technology, and age at the start of early intervention. Family variables include: 1) socio-demographic variables such as eligibility for a federal food assistance program (WIC) and the caregivers’ age and level of education, and 2) communication variables such as the languages used in the home and the communication approach (spoken and/or sign language) used with the child. Intervention variables focus on the amount and type of intervention in which the child and family participate.
The remaining 14 data files contain scores from the developmental assessments completed with the children. Ten of the assessments measured different aspects of language including general receptive and expressive skills, expressive vocabulary, and pragmatics. One of these assessments also examined other developmental areas such as motor, cognitive, and self-help skills. Two of the assessments measured functional auditory skills, and one examined pre-literacy and pre-numeracy skills. The final data file (“LENA”) is based on a full-day recording of the child’s language environment (gathered by an audio recorder worn by the child) and contains variables such as the number of adult words spoken to the child, number of child vocalizations, and quantification of the noise in the environment. LENA data were collected from a subset of the sample (n = 176 children), primarily in two early intervention programs.
All participants completed at least one developmental assessment at a given time point. The majority of the children completed two assessments, with some completing three or more assessments. A five-domain assessment (the Developmental Assessment of Young Children – Second Edition, DAYC-2) and a measure of expressive vocabulary and other language skills (the MacArthur-Bates Communicative Development Inventories) were the anchor assessments for the project with the Communication Matrix as a third option for children with significant additional disabilities. Of the 4,159 sets of assessments received, 98% contained at least one of these three measures (93% included a DAYC-2, 67% included the MacArthur-Bates CDI, and 4% included the Communication Matrix).
To gain access to the data files in this collection, the "Request to Use ODDACE Data" form must be completed and approved. The Data Dictionary is open to the public.
We appreciate and thank the families, interventionists, early intervention agencies, and EHDI programs who joined us in building a multi-site database to improve our understanding of the developmental outcomes of young children who are deaf or hard of hearing and their families. (2024-12-18)
