Our research program
Children with diseases affecting the nervous system often experience pain and irritability due to unknown causes. Sometimes the source of pain and irritability can be identified through careful physical examination, lab tests and imaging. Many times, however, examination reveals no obviously correctable source for pain and irritability. At that stage, various therapies are attempted to reduce pain, irritability and agitation. Unfortunately, there is no common approach to treating these problems.
Our interdisciplinary team of researchers is focused on improving pain management for children with complex health needs by conducting studies that investigate neuropathic pain, interventions that may resolve or reduce this pain and the implementation of a clinical pathway to help providers better care for children experiencing Pain and Irritability of Unknown Origin (PIUO).
We draw on our vast experience working with a population of children with complex health care needs as well as our determination to work with families through the lens of Patient Oriented Research (POR). Our work is supported by the CHILD-BRIGHT Network under CIHR's Strategy for Patient Oriented Research.
Goals
The purpose of our program is to develop, test, and disseminate a new approach to reducing and resolving pain in children with Severe Neurological Impairments (SNI). It focuses on the problem of ongoing, unexplained, and difficult-to-treat pain and irritability that many children with SNI, and their families, experience.
Our goal is to improve the management of unexplained pain beyond what has been accomplished by the child's usual clinical teams. In a small pilot study of the PIUO Pathway we reduced or resolved pain and irritability for 63% of participants. The primary outcome of our study is better pain control for non-verbal children with SNI. We also hope to decrease pain severity for our participants, improve family quality of life and ensure that the PIUO Pathway can be easily implemented by clinicians in the future.
With this study, we hope to:
1. Develop Guidelines
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If the PIUO Pathway helps us to successfully reduce or resolve pain for children with PIUO, we can make it the standard approach to managing PIUO. New practice guidelines for clinicians will achieve early detection, effective interventions (personalized medicine) and ultimately prevention for persistent complex pain in a highly vulnerable population of children.
2. Increase Consistency
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When the PIUO Pathway is the clinical standard for managing PIUO, we can create training programs that ensure consistency in the approach practitioners take to assessing and treating PIUO. A consistent approach will increase the confidence in our clinical ability to help families who experience great stress in the face of PIUO.
3. ENSURE ADEQUATE CARE IN THE COMMUNITY
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We want pediatricians working in the community to have the tools to help complex kids with unexplained pain locally. This will ensure patients and their families access to the right care in a timely manner. Ultimately, this also means fewer clinic visits and emergency room visits, fewer days for inpatient care and thereby overall savings to the health care system.
4. TALK ABOUT MEDICATIONS
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We know that for some children, even a careful search for a cause will not reveal a source for their pain and irritability. For those kids a number of medications have proven to help, but no-one knows what the most effective medications might be, what dosage is optimal or what the best sequence of medications is. We are testing one drug through a clinical trial.
“This study helped by acknowledging that pain has been an ongoing issue since my son was born. The study helps medical teams to better understand the unexplained pain within your child. This is very valuable, especially when the child is non-verbal and cannot express how or where it hurts.”
— Parent Participant in the PIUO Study
