NeuroDevNet "Better Days/Better Nights"
SWAPPs 4KIDS with NDDs. Structured functional Sleep/Wake Behaviour assessment in children with neurodevelopmental disabilities/disorders & monitoring therapeutic interventions.
Overview: Our team has developed a web app (sleep/wake behaviours App, SWAPP) to facilitate recognition, characterization and monitoring of sleep problems (SPs) and daytime sequelae in children and youth with neurodevelopmental disabilities (NDDs) [http://youtu.be/60Kx4jmU6Is]. The use of the SWAPP in clinical practice has created evidence for revisiting clinical practice guidelines and improving existing policies by highlighting the fundamental need, to recognize and appropriately treat sleep problems in most vulnerable populations. We collaborate with a network of multidisciplinary stakeholders, including non-governmental organizations (representing patients) and recently with decision makers to ensure rapid and sustainable implementation and policy change.
Objectives of our research: Further development of the SWAPP and associated database. We are particularly interested in medication strategies, captured by the medication module for monitoring psychotropic drug prescriptions and behavioural / neurologic adverse drug reactions. A free downloadable smart-phone version of our SWAPP for caregivers and practitioners to (self-)assess / recognize the concept of challenging sleep / wake behaviours will be ready around fall 2015.
Significance: At the end of the project we will have a series of validated and commercially available SWAPPs with patient driven self-assessment modules for participatory data collection on poorly understood challenging-disruptive sleep/wake behaviours. Patient and community tier input during all stages of development will result in effective implementation of the SWAPPs through knowledge translation activities in collaboration with non-governmental organizations.