Leveraging technology to identify outcome measures for young children with Down syndrome

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PROJECT SUMMARY/ABSTRACT Children with Down syndrome (DS) experience significant weaknesses in communication and language development in addition to impairments in intellectual ability. There have been significant advances in both pharmacological and behavioral interventions for children with DS to support their development. Thus, there is an urgent need to identify appropriate outcome measures to use with young children with DS. Such measures have been identified for school-age children, adolescents, and adults with DS. However, reliable, and valid language outcome measures for younger children (2-5 years) with DS are nonexistent, leaving an impossible task for researchers and clinicians to effectively evaluate the effects of interventions for young children. This age range is particularly important, as it is a foundational time for language learning and sets the stage for success both academically and socially upon school entry. Therefore, to better serve this clinical group, we must identify a feasible, reliable, and valid set of outcome measures for young children with DS. This study will evaluate the use of language samples collected remotely by caregivers using digital technology to serve as outcome measures for young children. The study has three specific aims: 1) determine the feasibility and reliability of language measures derived from two technologically-supported samples: caregiver-collected video recordings and the Language ENvironment Analysis System (LENA)-based caregiver-child interactions, 2) determine the validity of the caregiver-collected video recordings and LENA-based caregiver-child interactions using current gold-standard approaches, including standardized tests and examiner-child interactions, and 3) determine the relationships between key variables known to impact language in DS (I.e., intellectual disability and intelligibility) and the variables derived from the caregiver-child and LENA-based interactions. Data collection will take place in the participants’ homes and will include two time points (1 month apart). The caregiver-collected and LENA recordings will take place without an examiner present. At each time point the study team will complete home visits to complete standardized assessments and an examiner-child language interaction. This method will allow us to establish the psychometric appropriateness of variables derived from these language sampling approaches, the stability of these variables over a 1-month period, and how they are influenced by important child characteristics. The information from this project has direct implications for clinical trials, including both pharmaceutical and behavioral interventions, research paradigms focused on understanding language development during the early years of development for children with DS, and clinical services offered to young children with DS.