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

PROJECT SUMMARY/ABSTRACT Children who are later talkers, including children with and without Down syndrome (DS), experience significant weaknesses in communication and language development. There have been significant advances in pharmacological and behavioral interventions for children with DS, and there are interventions designed for

children who are late talkers without DS. There is an urgent need to identify appropriate outcome measures to use with young children who are late talkers. Such measures have been identified for school-age children, adolescents, and adults with DS and other clinical populations. Reliable, and valid language outcome

measures for younger children (2-3-years) who are late talkers are nonexistent, leaving an impossible task for researchers and clinicians to effectively evaluate the effects of interventions. 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 late talkers. 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 late talkers (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. For the parent project we are recruiting 40 children with DS over a two-year period. For this one-year supplement we will recruit 20 2–3-year-old children who are later talkers who do not have DS. This will allow us to understand if these outcome measures are sensitive and appropriate broadly among a

group of late talkers, or if there are etiology specific differences. This is the first step in a series of studies which will provide targeted treatment for language in children who are late talkers. However, without clear, robust outcome measures it is impossible to determine if the interventions are effective and efficacious.