Approaches to study the lifelong trajectories of children with neurodevelopmental conditions

Authors:
Downs J, Leonard H

Authors notes:
Life Quality Outcomes in Children and Young Adults with Neurological and Developmental Conditions: Concepts, evidence and practice. London: Mac Keith Press; 2013. p. 329-43.

Keywords:
Developmental disorder, neurological outcomes, children, longitudinal studies, Australian Rett Syndrome Study

Abstract:
In this chapter we discuss the use of population-based studies, including those with a longitudinal component, to better understand trajectories and outcomes for children with developmental and childhood-onset neurological outcomes.

We argue that population-based studies are critical to overcome the selection bias seen in many clinical samples and to identify true variability within a condition.

We discuss how longitudinal studies allow for monitoring of children's growth and development over time, both to look forward to accrue important prognostic information and to look back to assess the antecedents of outcomes.

We advocate that longitudinal studies be continued into adulthood to work towards an understanding of the successful ageing of children with a developmental and childhood-onset neurological condition.

Finally we illustrate the argument with the methodology and outcomes of the Australian Rett Syndrome Study, an example of research that combines population-based study methodology with a longitudinal follow-up component.