What if, as a clinician, your instinct tells you that your client is in pain, but you don’t have the effective tools to properly assess the situation?

That’s a challenge that Tessa Gresley-Jones, nurse practitioner (NP) at Holland Bloorview Kids Rehabilitation Hospital was all too familiar with. As the NP who runs the Complex Continuing Care neuromotor clinic, she often sees children who have pain.

When participation in activities is hampered due to pain, quality of life is negatively affected. From the client’s perspective, ‘just being a kid, like every other kid,’ is an important priority.

“As a clinician, I know how important it is to treat pain,” says Tessa. However, pain in children with disabilities is an under-researched area, leaving health care practitioners with a limited number of pain assessment and intervention tools to turn to.

A recent Holland Bloorview study showed that 25% of children with cerebral palsy (CP) experienced pain that affected their participation in everyday activities. Knowing this, and that there were limited standardized tools available, Holland Bloorview knew something had to be done.

Enter Holland Bloorview’s Evidence to Care (EtC) team. A team created to bridge the gap between research, clinical care and policy, informing the best care for children with disabilities at Holland Bloorview and beyond. They identified the Pain Toolbox as one of its first priority projects with input from a group of multidisciplinary healthcare professionals, researchers and family leaders.

“When the EtC team asked me to be a part of the Pain Toolbox development team, I jumped at the opportunity,” explains Tessa. “As a front-line clinician, I don’t have the time or expertise to tackle this challenge on my own. By being part of a multi-disciplinary team that brings together research, clinical and knowledge translation skills, we were able to collectively build a pain toolbox tailored to meet the needs of kids with disabilities.”

Once developed, Holland Bloorview put the Toolbox to work, implementing it in its own clinics. This was the first step in creating a consistent approach to pain assessment for kids with CP.

Clients and families welcomed this more consistent approach to pain assessment. Jan Magee, mother to Wesley, a teenage boy with CP, explains “Pain management is crucial. It impacts all aspects of my son’s life. When he’s in pain it may mean he can’t use his walker, or he can’t focus because the pain is distracting him. It affects his mobility, his independence, his mood – all aspects that affect his overall quality of life.”

Dr. Anne Kawamura, who piloted the toolbox in her pediatric rehabilitation clinic, acknowledges that it “helped her be more consistent in assessing pain in each of her clients.” Because pain is only one of many conditions she discusses with her clients with CP, Anne needed tools that were very efficient. By looking at her workflow, volumes, clinical diversity and time restrictions, she worked with the EtC team to select the best tools for her clients.

Reflecting on her involvement during the pilot, Anne said, “We weren’t missing pain in large numbers of children, however for those who were experiencing pain, it was a significant issue for them.”

Anne cites a particular client story as a pivotal moment. The assessment showed that a young girl was experiencing pain and was unable to participate in gym class. When Anne met the child, it became clear that participating in gym was very important for her. Anne responded by placing more emphasis on pain management recommendations, including stretching, physio and medication, if needed, for this young girl.

Holland Bloorview is now leading the way in moving research evidence into practice in pain assessment and making a huge difference in the quality of life for those children who have chronic pain.

Holland Bloorview is ready to offer the Toolbox to clinicians outside of the hospital. With support from the Ministry of Health and Long-Term Care (MOHLTC), together our vision to promote evidence-informed pain assessment is becoming a reality. The Toolbox is now available at www.hollandbloorview.ca/toolbox.