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Patient Perspectives in Focus: Enhancing SCI Care with PROMs

Many factors determine the recovery outlook after Spinal Cord Injury (SCI), so it is important to take an individualized approach to rehabilitation.

At the PCHI Lab, we aim to enhance SCI care by integrating patient-reported outcomes (PROMs) into the rehabilitation system.

PROMs are tools that allow patients to report their own health status and experiences directly. In the context of SCI management, PROMs provide a means for individuals with Spinal cord injuries to communicate their symptoms, functional abilities, and quality of life factors to healthcare providers.

Spinal cord injuries are complex and diverse, impacting individuals in unique ways. Traditional measures may not capture the full spectrum of individuals’ experiences. PROMs integration offers a holistic approach that considers not just clinical indicators but also patients’ perspectives, to guide more personalized and effective care.

To reach our goal, we began working with patients, healthcare providers, administrators, and decision-makers in three rounds of the Delphi process to reach a consensus on what matters most and needs to be measured consistently in rehabilitation care. The results from the Delphis were used to identify an optimal core set of PROMs measures.

Currently individuals with SCI in two rehabilitation centers in Ontario and Vancouver are completing PROMs assessment at various points in their care journey through the AboutMe digital platform during clinic visits or remotely. These assessments will cover a range of domains relevant to SCI, including physical function, pain, emotional well-being and social participation.

Clinician | In a Qualitative Interview

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Figure 1: Dashboard of a PROMIS report.

What are the benefits?

Integrating PROMs into SCI management offers several key benefits:

  1. Patient-Centered Care: PROMs empower patients to actively participate in their care by providing insights into their own health status and treatment outcomes.
  2. Enhanced Communications: PROMs facilitate communication between patients and healthcare providers, fostering a collaborative approach to decision-making.
  3. Tailored interventions: By understanding each patient’s unique needs and priorities, healthcare providers can tailor interventions and support services to optimize outcomes.
  4. Continuous monitoring: regular PROMs assessments enable ongoing monitoring of patient progress and adjustment of treatment plans as needed, ensuring timely interventions and improved long-term outcomes.


How can you get involved?

If you or someone you know is living with a spinal cord injury, your participation in PROMs assessment is invaluable. By sharing your experiences and feedback, you contribute to advancing SCI care and help shape future interventions.


Spread the Word!

Join us in spreading awareness about the integration of PROMs in SCI management. Share this newsletter with your network and encourage others to learn about this exciting initiative.


Together, we’re transforming spinal cord injury care for the better.

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