Informing Clinical Practice Guidelines for Children and Youth With Down Syndrome: A Survey of Key Partners.

Abstract

The purpose of this work was to describe input from key partners to inform the scope and priorities for a clinical practice guideline (CPG) pertaining to physical therapy services provided to children and youth with Down syndrome (DS). A 68-item survey was completed by interventionists and parents (n = 296) of children and youth with DS. The most prevalent physical therapy interventions currently being performed included tummy time, postural control activities, activity-based interventions, and play-based interventions. Key partners agreed on the importance of specific clinical outcomes, needing guidance on frequency and dosage of interventions, common barriers to physical therapy intervention, and needing information for discharge criteria in a future CPG. The results of this survey have given the CPG committee the necessary information to inform the CPG process for children and youth with DS.