Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairment (PIUO)

Looking back:
our work in Phase 1

We’re pleased to report that as of March 31, 2022, 73 children had completed the Pain and Irritability of Unknown Origin (PIUO) Pathway, which is the systematic approach we developed to help manage their pain. Even as we finalize our Phase 1 results, our research has already shone a light on the importance of individualized attention to complex medical needs and solutions. For families who are used to seeing multiple specialists, going through the pathway may turn the tide in their day-to-day experience of managing a distressing feature of their child’s condition.

 "We did this study for my son two years ago. The nurse was amazing to work with. The doctor as well. We were able to manage the unknown pain effectively, and honestly, our lives have become better because of it. I knew when we started that a positive outcome wasn't guaranteed, but we were fortunate!" ­— Parent of a PIUO study participant

This year, our efforts to build capacity for patient-oriented research initiatives resulted in multiple research projects coming to fruition. We hosted a journal club for parents of children with complex medical needs, with a second session scheduled for spring 2022. The journal club provided a space for parents to have a rich discussion about a curated list of academic literature related to their family experiences and led to the creation of a special edition newsletter. Because of the overwhelming positive feedback, we are now making the journal club a standing feature of our research activities.

We also launched two other projects investigating the research process as it relates to the experiences of self-identified “medical families”. One project is led by our Family Liaison Laesa Kim and looks at parents’ motivations for participating in research related to their children’s special medical needs. Another project, led by the local team at one of our study sites, is an investigation of the recruitment challenges faced by our broader team during the COVID-19 pandemic.

An eye to the future: what Phase 2 has in store for us

Team members with lived experience that parallels that of our target population are an integral part of every stage of our research process. We are listening closely to patient-partner voices as we move towards translating the results of our Phase 1 research into a readily available tool for community practitioners. We believe the PIUO Pathway can help clinicians who see kids with complex medical needs to systematically assess the potential root causes of their pain and irritability. In Phase 2, our cross-disciplinary team, including patient-partners, will flesh out what this tool looks like and how to implement the pathway in a community setting.