Advancing health-care access to optimise health and quality of life for children and young people with Down syndrome worldwide.

Abstract

This Series paper describes the health inequities faced by children and young people with Down syndrome, and how health systems can be strengthened to meet these needs. Meta-analyses have shown that children and young people with Down syndrome face frequent health challenges, including, but not exclusively, increased rates of respiratory infections and poorer cancer outcomes. Important evidence gaps remain in the health needs and trajectories for children and young people with Down syndrome, despite this period of early life being a crucial period for intervention and development. Inclusive and accessible health systems are vital for children and young people with Down syndrome, and their families, to support good health and good health-care access. Yet, current health systems are failing to meet these needs. Families experience fragmented and uncoordinated care, and gaps in availability of essential services. Barriers, such as stigma, lack of knowledge and false assumptions, and diagnostic overshadowing, further limit the quality of care. Consequently, health systems are failing to maximise health and development for children and young people with Down syndrome. Core ways in which health systems should be optimised to better meet their needs include the accommodation of co-occurring conditions and broad-ranging functioning profiles, and provision of coordinated multidisciplinary care across paediatric and young adult years. Crucially, health-care providers must work more closely with children and young people with Down syndrome and their families, and offer connected and respectful care.