DCD in adulthood

About DCD in adulthood

Developmental Coordination Disorder (DCD) is a neurodevelopmental disorder affecting an estimated 5–6% of all children — equivalent to approximately 80,000 school-aged children in Sweden. Despite its prevalence, DCD remains underrecognized and underdiagnosed, partly due to limited awareness and understanding.

DCD is characterized by motor impairments that impact daily life, including participation in physical activities, social interactions, education, and work. Although motor "clumsiness" is often dismissed, the consequences extend beyond motor skills, affecting physical and mental health, educational achievement, and vocational success.

It was previously believed that children would outgrow their motor difficulties, but research shows that these challenges often persist into adulthood. While research on DCD has expanded, important knowledge gaps remain regarding long-term outcomes and adult functioning.

About the project

To better understand the trajectory of motor difficulties from childhood to adulthood, we have conducted a longitudinal follow-up of a cohort of infants treated at the neonatal intensive care unit at Uppsala University Children's Hospital between 1986 and 1989. In the original cohort study, the children underwent repeated neurodevelopmental assessments. Based on a comprehensive motor assessment conducted at 6.5 years of age, the children were, for research purposes, categorized into motor deviation categories, including those meeting criteria for DCD.

Following up these individuals, now adults, provides a unique opportunity to increase our understanding of DCD in adulthood and of the trajectory of motor impairments.

What we have done

To map the sociodemographic and clinical characteristics of the cohort, we have conducted a register-based study using data from the Swedish National Patient Register, the Swedish Prescribed Drug Register, and the Longitudinal Integration Database for Health Insurance and Labor Market Studies.

In addition, during 2020, we conducted an online survey. We have also interviewed a subsample of individuals who met the criteria for DCD at 6.5 years of age, as well as individuals who exhibited motor impairments consistent with DCD but without significant impact on daily activities, to explore the long-term ramifications of childhood motor difficulties and gain insights into their consequences over time.

Why this matters

Improving our understanding of how DCD manifests and evolves into adulthood is crucial for developing better identification methods, support strategies, and interventions that meet individuals' needs across the lifespan. By describing long-term outcomes and the real-world impact of childhood motor difficulties, this project can help inform clinical practice, education, and policy development. Our findings will also contribute to raising awareness of DCD as a lifelong condition and highlight the importance of early and effective support — not only to improve individual participation and health, but also to reduce long-term societal and economic costs.