Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairment (PIUO)
Contact
Anne-Mette Hermansen
Email
Children born with severe brain-based developmental disabilities frequently experience persistent unexplained periods of pain and irritability, often compounded by a limited capacity to communicate their distress. Here, we have designed a systematic approach to address the management of the children’s pain with the goals of reducing pain symptoms, improving the day-to-day lives of the child and family, and simplifying treatment options for clinicians.
Research theme:
BRIGHT Supports: Projects to integrate mental health into care
Age range:
0.5–18 years
Start date:
April 2017
Principal Investigators:
Dr. Hal Siden, BC Children's Hospital & University of British Columbia
Dr. Tim Oberlander, BC Children's Hospital & University of British Columbia
Website:
www.paindetectives.org
A small change to the way we do things can make a big difference for patients
The Pathway is a simple idea; but sometimes the simplest ideas require the most proof because they challenge previous ideas. We need to a thorough study to prove that a simple change in care delivery can make a big difference in pain management.
We have investigators across the country and a Family Advisory Committee helping as well
Our study investigators include Dr. Tammie Dewan at BC Children’s Hospital in Vancouver; Dr. Vithiya Gnanakumar at Alberta Children’s Hospital in Calgary; Dr. Julia Orkin at the Hospital for Sick Children in Toronto; and Dr. Christina Vadeboncoeur at the Children’s Hospital of Eastern Ontario in Ottawa.
2020-21 Project Update
2019-20 Project Update
We have learned a number of lessons about the true value of our research and what matters in pain service delivery to children with severe neurological impairments in the past year, through our work with 40 children in our study. We learned that close and frequent contact between participants and our nurses is particularly effective in providing targeted pain services and ensuring a thorough investigation of pain and irritability of unknown origin. And for those whose pain persists, we are learning that acknowledging and paying continued attention to the child’s pain experience makes a difference to the parents. The responses from participants have been overwhelmingly positive.
In January, we welcomed Laesa Kim (pictured) to the team. In her novel role as Family Liaison, Laesa is connecting families with research and collecting information and stories from those who have been through our pathway, to capture their experiences and their motivation for participating. Embedding a patient-oriented research perspective in our work will strengthen our final analysis by giving us a contextual understanding of parents’ experiences caring for their children while engaging with a research project such as ours.
In the last quarter of this fiscal year we developed and submitted an application to trial a drug called gabapentin with participants who continue to experience pain and irritability after all investigations for treatable causes have been exhausted. We hope that trialing this well-known drug will provide evidence for its efficacy, which is currently lacking in our pediatric population.
Project News
