OPINION: Nationwide support needed to improve quality of life for Canadians living with spinal cord injuries

It takes approximately 17 years for scientific discoveries about spinal cord injury to be put into practice. This needs to change.

Seventeen years is a long time to wait. Unfortunately, that’s the length of time it takes – on average – for scientific discoveries about spinal cord injury to be put into practice.

This delay is unacceptable – especially for the estimated 86,000 Canadians whose lives have been upended by this devastating condition. We can and we must do more to drive collaboration and cooperation among clinicians, researchers, policymakers, health-care providers, members of the wider community and people living with SCI.

It’s for this important reason that we launched the Spinal Cord Injury Implementation and Evaluation Quality Care Consortium (SCI-IEQCC) two years ago. The SCI-IEQCC is a network of community partners and stakeholders from spinal cord rehabilitation centres across Ontario all of whom are on a shared mission to provide exceptional, equitable care for individuals living with SCI — regardless of where they live.

We are working relentlessly and aggressively to accelerate the translation of research into best practice. In the two years since our formation we’ve transformed care in the following areas:

  • Emotional well-being: Routine screening for depression and anxiety now take place at rehab admission and discharge, to help ensure at-risk individuals receive the support they need.
  • Sexual Health: An expanded library of online and in-person training and resources for staff has increased clinicians' sexual health knowledge, enabling them to have more open discussions with patients about sex.
  • Walking: With walking being a high priority among patients with SCI, regardless of age or severity of injury, SCI-IEQCC now identified which outcome assessments hospitals should be used to monitor a patient's functional recovery.
  • Wheeled Mobility: The number of patients receiving wheelchair skills training, which helps maximize their ability to engage and move safely in their home and community, grew by 66 per cent.
  • Tissue Integrity: An increased number of staff complete daily head-to-toe skin checks, and teach patients how to self-check, in an effort to maximize the number of patients discharged from hospital without pressure injuries, and promote self-monitoring in the community.
  • Urinary Tract Infections (UTI): With the goal of reducing inappropriate use of antibiotics, which can lead to drug resistance – there is now one agreed-upon definition of a UTI in patients with SCI. A person's temperature can be a reliable sign of infection, although the temperature cutoffs after SCI differ from the general population. UTIs are the most frequent hospital-acquired condition, clinicians can now reliably identify who has a fever and now know how to diagnose a UTI, and prescribe antibiotics.

By working together to co-design care, members of SCI-IEQCC are learning from each other, measuring and evaluating collective performance in real-time, and alleviating the standard of care.

Despite all of the progress we’ve made, and the fact we’ve grown to include partners from other provinces, it’s not enough. 

If we want to enable people living with spinal cord injury to live a meaningful life, where they're empowered to manage their health, connect with others, and engage in activities that matter most to them, then we need support from both federal and provincial levels of government across Canada to ensure a successful expansion of this network nationwide. 

By collaborating with partners across the country we will be able to tap into our nation’s vast depth of knowledge in SCI to hasten the translation of research into care for those who need it most. 

This is an opinion piece written by Dr. Cathy Craven who is a senior scientist at the KITE Research Institute and the Medical Director of the Spinal Cord Rehabilitation Program at Toronto Rehab.