Research team to develop medication self-management toolkit for people with spinal cord injury

Sara Guilcher and team will co-create toolkit in collaboration with people with spinal cord injury

People with spinal cord injury often have complicated medication regimens, which can be overwhelming and difficult to integrate into everyday life. They often have a lot of questions related to their medications and struggle with conversations related to medication concerns with their health care providers.

To help address these concerns, Sara Guilcher, Associate Professor at the U of T’s Leslie Dan Faculty of Pharmacy, and a team of researchers and trainees with expertise in disability, self-management and quality of life, will develop a toolkit in collaboration with people with spinal cord injury to help with medication self-management. The project is funded by a three-year, nearly $400,000 US grant from the Craig H. Neilsen Foundation and builds on a successful pilot project supported by the same Foundation.

“It’s important that people who have spinal cord injury and experience disability are able to live as they want to and have meaningful participation in society.”

“It’s important that people who have spinal cord injury and experience disability are able to live as they want to and have meaningful participation in society,” says Guilcher. “Self management allows an individual to manage symptoms and integrate their medications into daily life so they can optimize what they want in their life with minimal negative impact.”

One of the key findings of the pilot project was the high rate of polypharmacy, usually defined as taking five or more medications, in this population. Using health administrative data, Guilcher’s team found that most people with a spinal cord injury were taking more than five medications, and even taking 10 medications was common. They also frequently took high-risk medications, such as opioids and benzodiazepines, and commonly received chronic high doses.

The team also interviewed people with spinal cord injury about their experiences with medications, which revealed that they often had concerns about the long-term side effects, addiction or the medications losing effectiveness over time. At the same time, they didn’t necessarily have the knowledge, confidence, or time during appointments to talk to their health care providers about their concerns. Health care providers also identified that they didn’t always feel that they had the specialized knowledge to provide thorough medication counselling.

“There are a lot of issues at both the individual and provider levels, and there isn’t a lot of space for people to have these conversations about their apprehension and anxiety,” says Guilcher. “The pilot study raised some alarm bells that medication management is an issue for people with spinal cord injury, and we have a lot of improvement to do.”