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Quality of Life & Adaptive Functioning in Adolescents & Young Adults with Down Syndrome


Research Team

Name

Principal Investigator: Susan Loveall

Funding Information

Funding Agency: Office of Research and Innovation—Nebraska Research Initiative (NRI)

Award Date: Jul 1, 2026

End Date: Jun 27, 2027

Abstract

Down syndrome (DS) is the most common chromosomal condition in the United States, resulting from a complete or partial copy of chromosome 21. Down syndrome is associated with subsequent impacts across key domains known to support adaptive functioning (i.e., the conceptual, practical and social skills required for daily living and independence) and quality of life (i.e., emotional, physical and material well-being) in individuals who are neurotypical, including cognition and executive function, mental health, hearing health, language and literacy, and brain structure and function. 

Yet strikingly little is known about the development or influence of these key domains on adaptive functioning and quality of life in adolescents and young adults with DS. This is critical as the transition from adolescence to young adulthood is typically a period marked by significant changes in these key domains. It is also of paramount importance to public health as the transition from educational settings to adult service systems for individuals with DS. 

This project aims to establish developmental patterns in key domains and identify which domains best predict adaptive functioning and quality of life outcomes in adolescents and young adults with DS. Researches will establish test  protocols and domain-specific assessment tools, and will collect data from 30 adolescent and young adult participants with DS. 

Findings will help improve adaptive functioning and quality of life outcomes for individuals with DS during the transition from adolescence to young adulthood.


Social, Emotional and Behavioral Well-being