Multidisciplinary Care for Children with Down syndrome in the Netherlands: A Modular Perspective

Down syndrome is a complex congenital condition and the most prevalent genetic cause of intellectual disability in humans. Although people with Down syndrome share a typical appearance, intellectual disability, and delayed motor development, each individual with Down syndrome is unique. In addition, many individuals with Down syndrome experience various comorbidities, therefore, people with Down syndrome have complex healthcare needs. The prevalence and severity of these comorbidities varies. This makes individuals with Down syndrome a very diverse and heterogeneous patient group from an early age, despite their common genetic background (trisomy 21). Providing adequate healthcare and interventions in the early life of individuals with Down syndrome improves physical and mental development. In the Netherlands, 22 pediatric outpatient clinics organize multidisciplinary team appointments (so-called "Downteams") to address the complex healthcare needs of children with Down syndrome. In this study, we present the healthcare provided by these multidisciplinary teams in a modular way and show that this modular approach results in improved healthcare provision for children with DS.