When Shannon Purves was diagnosed with a spinal cord injury (SCI), following a motor vehicle accident, there were only two questions on her mind.
"All I wanted to know was if I would walk again, and if I'd be able to have kids one day," says the 31-year-old. "But I wasn't sure when or how I'd get the second question answered."
To her surprise – and relief – sexual health was one of the first topics introduced to her when she was transferred to UHN's Brain and Spinal Cord Rehabilitation Program at Toronto Rehab's Lyndhurst Centre.
Toronto Rehab's focus on sexual health is an extension of the efforts of the Spinal Cord Injury Implementation & Evaluation Quality Care Consortium – a network of SCI sites and patient partners across Ontario, committed to providing equitable and optimal SCI rehabilitation care, no matter where a patient lives.
This work has ignited a national spark, as it begins to expand across Canada.
"Right now, the quality of SCI care patients receive is largely dependent on where their accident takes place and the proximity of the tertiary rehabilitation centre to their home," says Dr. Cathy Craven, Evaluation Leader of the Consortium, Senior Scientist, and Medical Director of the Spinal Cord Rehab Program at Toronto Rehab.
"We have established a first-ever network to implement best practices and collect indicators of quality care that will lead to better outcomes for everyone."
The network was launched in Ontario in January 2019. Participating sites include UHN, St. Joseph's Health Care London, Providence Care Hospital, The Ottawa Hospital, Hamilton Health Sciences, and Spinal Cord Injury Ontario.
With funding from Praxis Spinal Cord Institute, the network has now been expanded to include tertiary rehabilitation hospitals from Alberta, Nova Scotia, New Brunswick, and PEI.
“Praxis is very pleased to support five SCI rehabilitation hospitals in these four provinces to join the Spinal Cord Injury Implementation & Evaluation Quality Care Consortium, as it aligns perfectly with the goals of Praxis’ Care Program, which is to achieve evidence-informed equitable care for Canadians who sustain an SCI,” says Vanessa Noonan, Director of Research & Best Practice Implementation, Praxis Spinal Cord Institute.
“This is such a wonderful opportunity to improve care and outcomes in these six priority areas for individuals living with SCI and we hope to support other hospitals from across Canada to join in the near future.”
The future of SCI care in Canada
According to Dr. Craven, individuals living with SCI are among the most complex patients receiving rehabilitation services.
"We owe it to them to work as fast as we can to increase their functional independence and facilitate their health and wellness in the community as best as we can," says Dr. Craven.
Focusing on six areas of care, prioritized by importance and urgency, the network aims to influence a person's long-term recovery, health and well-being, and quality of life.
These areas include walking, wheeled mobility, emotional well-being, tissue integrity, urinary tract infections, and sexual health.
By following people living with an SCI for 18 months from the time they begin rehabilitation, the network aims to ensure the care individuals receive as patients sets them up for long-term success in the community.
The ultimate goal is to use this information to establish best practices in SCI rehabilitation, which all sites in Canada will be benchmarked against.
In the short time they've been implementing rapid quality improvement initiatives and measuring the outcomes, the network has already seen an increase in engagement and improvement in practice across participating sites.
The future of SCI care in Canada
Establishing best practices within each area below will ensure equitable and optimal care for Canadians.
Walking – Ensure those who have the potential to walk are getting the intensity of therapy needed to maximize the recovery of walking.
Wheeled mobility – Maximize community wheelchair skills through standard mobility assessments.
Emotional well-being – Improve screening and management of depression and anxiety, to maximize rehabilitation outcomes.
Sexual health – Create a permissive environment for clinicians and patients to have open discussions around sexual health inquiry.
Tissue integrity - Reduce incidence and severity of pressure injuries (from wheelchairs and beds) across a person's lifespan.
Urinary tract infection (UTI) – Reduce inappropriate antibiotic prescriptions for Urinary Tract Infections.
Putting ideas into action
Shannon Purves's initial questions and concerns around sexual health help illustrate the impact of this work.
Within the sexual health domain, enhanced care means creating a permissive environment for clinicians and patients to have open discussions around sexual health inquiry.
To that end, Toronto Rehab has added the topic of sexual health to all occupational therapy (OT) assessment forms. That means every patient admitted to Lyndhurst is automatically asked if they would like to speak to a care team member about sexual health.
It also means that every patient knows that Lyndhurst offers a safe and permissive environment to do so.
Just one week after her initial OT assessment, Shannon was invited to join a sexual health information session for women – a regular group session led by a patient & family educator – and a one-on-one appointment was also booked.
"They reassured me that, although my body may work differently now, I'm still the same amazing, beautiful person I was before – and that really stuck with me," says Shannon.
Through group sessions, one-on-one appointments, and educational materials and resources, Shannon feels like she was given all the information she needed. And with so many unknowns still ahead of her, she gains comfort in knowing that, upon discharge, sexual health won't be one of them.
"It has definitely increased my confidence, to know my questions have been answered, and that I'm as prepared as I can be," she says.
Developing new models of collaboration
Dr. Dalton Wolfe, Implementation Leader of the Consortium, and scientist at Parkwood Institute, is confident that the success of the network in changing the way we rehabilitate patients with SCI will be grounded in its collaborative approach.
"It has been so exciting to see the genuine passion that different clinicians from across Ontario bring to our shared work – all in the spirit of improving care for patients and achieving the best rehabilitation outcomes possible," he says.
"Learning together and sharing notes on implementation strategies has been such a benefit – one good idea has often led to another."
Dr. Craven agrees, adding that an SCI rehabilitation network of this magnitude is like nothing she's experienced before.
"The Consortium has provided a platform for care providers to share knowledge, expertise, and reflect on best practice indicator implementation, helping to create a learning health system. This exciting work is transforming culture and measuring what matters, while focusing on equity and patient priorities."
For more information on the Spinal Cord Injury Implementation & Evaluation Quality Care Consortium, visit
www.sciconsortium.ca.
