PIUO Phase I

Some children who have severe neurological impairment and who are non-verbal and non-mobile, experience Pain and Irritability of Unknown Origin (PIUO). The problem can be pervasive, both disruptive to everyday life and activities as well as ongoing for months or even years. These children cannot tell their caregivers where it hurts and they exhibit ambiguous pain behaviours that their families and clinicians cannot easily interpret, beyond knowing that their child is uncomfortable. Families are left frustrated with inconsistent and ineffective care provided to them by many different specialist teams and clinicians have no pathway to help their patients.

Drs. Hal Siden and Tim Oberlander have worked with kids experiencing PIUO and their families for decades and have developed and followed a stepwise protocol to assess and treat PIUO when they encounter it. This is the PIUO Pathway. In 2017 we launched a large study to test the PIUO pathway in four clinical centres across the country. 72 children were seen by pediatric pain specialists and a dedicated nurse and MD team worked with families to do a full work up of each child and intervene with treatments or management tools to identify and resolve PIUO. While some children continue to experience pain and irritability that we can’t explain yet, we moved the care program and service delivery in this area forward and received an overwhelmingly positive response from study participants in their evaluation of their experience with our program.  

The PIUO Study is now moving into a new phase of implementation science. We are preparing to move our program from a research environment into community clinics. In the next two years we are testing and studying the uptake of the PIUO Pathway by pediatricians who see children with SNI and PIUO in a primary care setting.