Pain affects all aspects of life, but for many of us, it’s an abstract concept. A brief inconvenience that pops in and out of our lives from time to time.

But, for a moment, imagine what it would feel like to experience chronic pain for an entire month. Start with that, but now expand it out to a year—or maybe even, every day of your life. Imagine having difficulty sleeping, walking or eating, every day, and then imagine that you have cerebral palsy and are non-verbal—you can’t tell anyone about it.

If that reality sounds off-putting, it should. But to Steven Koop, MD, Medical Director at Gillette Children’s Specialty Healthcare, the fact that some individuals experience the world this way is something we all need to face.

“As a doctor you are taught to judge outcomes based largely upon visual evidence: How does an X-ray look; can someone stand or walk. The issue with properly diagnosing chronic pain is that you can’t always see the full picture,” Koop says. “Pain is only truly known to the individual who experiences it. It’s always something we ask about, but we knew we needed a more comprehensive method of assessing the pain levels of all of our patients, particularly those who can’t tell us what’s wrong.”

This was the challenge. Finding answers would require reflection, research and a little help from some Canadian colleagues.

Science Will Set You Free

“Through our own experience and by information being published, we knew that chronic pain was a significant issue among our patient population,” Koop says. “It was becoming clear to us that rather than being just one of the factors that we were trying to manage, more often than not, pain was the determining factor for how our patients felt about their day-to-day lives.”

For help in finding additional methods of assessing chronic pain, Koop enlisted Chantel Barney, PhD, clinical scientist and knowledge translation specialist at Gillette.

“There is such a high volume of medical research that is being done every day now, it can be difficult for clinicians to keep up,” Barney says. “My role at Gillette is to support our clinicians by identifying the challenges they’re facing on a daily basis, then go out and find evidence-based practices from new research that could potentially be integrated into the care they’re providing at the bedside.”

Research Over BordersChantel Barney, PhD, discussing the chronic pain toolbox with Gillette staff.

During the process of sifting through different strategies used by other hospitals and institutions to assess and treat chronic pain, Barney came across a webinar from Holland Bloorview Kids Rehabilitation Hospital in Toronto.

“There aren’t many institutions that specialize in the type of complex care that we provide at Gillette,” Barney says. “Holland Bloorview has a patient population that is quite similar to our own, and they had developed a chronic pain assessment toolbox geared specifically towards individuals who have cerebral palsy. It looked quite promising, so I called them. That’s how it started, but several months and many phone calls later, we received a grant to have Holland Bloorview help us in the implementation of the toolbox at Gillette.”

Treating Pain at the Source

The central issue when it comes to assessing pain is that pain is by its very nature, subjective. The chronic pain assessment toolbox was developed with this in mind, and allows medical providers to identify and track pain in a more quantifiable way.

Dr. Dalberg examing his patient and running a pain profile.The toolbox contains 15 detailed surveys that patients can fill out with their families that offer a more comprehensive overview of how pain is affecting their daily lives. By using the responses to the surveys, providers are able to establish baseline scores for pain that their patients are experiencing over time. This allows them to better identify areas of concern as they arise. These tools can also be tailored to patients in clinic, several of which are designed specifically for patients who are non-verbal.

“The toolbox is an expansion of the conversations our specialists are having with their patients at their appointments, but it also adds more structure to how we approach these conversations,” Koop says. “The chronic pain toolbox has heightened our awareness of pain. It’s allowed us to move from intuition and subjective measurements to being able to assess it in a way that is more clearly defined. Now, the conversation about pain is driving and guiding the course of the treatment we provide.”

New Methods Improve Patient Care

This change is already making a difference in the lives of Gillette patients. For Koop, Barney and the rest of the staff, that’s the most rewarding thing.

“I was talking to one of our nurse practitioners the other day about a patient she was seeing. She knew the patient was experiencing quite a bit of pain, but she wasn’t sure what was causing it,” Barney says. She looked at the patient’s toolbox scores and found that the pain was spiking on the mobility portion of the survey. Because of this, she identified his braces as the issue. She took him over to Assistive Technology, had the braces modified, and he went home more comfortable. I have little doubt that we would’ve come to that conclusion in time, but if using the toolbox saves one of our patients from even a moment of unnecessary pain, it’s worth it.”

Going forward, Gillette Children’s and Holland Bloorview are exploring additional opportunities to work together to improve patient care. 

Todd Dalberg, MD, sharing a laugh with a patient family at Gillette

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