The International Spinal Cord Society (ISCoS)’s annual scientific meeting is the place to be for professionals across the field of SCI care and research! In September 2024, our Manager of Peer Coaching and Outreach, Teri Thorson travelled to Antwerp, Belgium for ISCoS’s 63rd Annual Scientific Meeting.
The ISCoS Annual Scientific Meeting, like other conferences, is a valuable opportunity to learn, connect and collaborate. However, it can take much longer for most health care providers (and even longer for people with SCI!) to learn about new and promising in research. Fortunately, we’re sharing key takeaways from ISCoS’s 63rd Annual Scientific Meeting to help you stay informed and have conversations with your health care providers. Read on to learn more!
1. SCI impacts the whole body.
Systemic disease refers to conditions that affect the whole body, rather than a single organ or tissue. Although SCI is not a disease, more and more researchers are investigating SCI as a systemic condition rather than just a spinal injury. For example, when someone has an SCI it can affect how their body uses and stores energy. This may lead to issues such as increased body fat, high blood pressure, unhealthy blood fat levels and liver problems. Recent studies suggest these metabolic changes could be just as harmful, if not more so, than those caused by consuming unhealthy, fatty foods, which is prompting researchers to better understand the systemic impacts of SCI and how they can be better managed.
2. People with SCI want a say in research (and researchers are listening).
It’s no surprise that people with SCI want more involvement in decisions about new treatments. Researchers are increasingly working together with the SCI community before launching human clinical trials.
One study surveyed people with SCI in Australia about their willingness to participate in olfactory ensheathing cell (OEC) transplantation trials. OEC transplantation therapy shows promise in restoring motor, sensory and autonomic function in pre-clinical research and is now progressing towards a human clinical trial. Three-quarters were highly willing to participate, identifying practical supports such as accommodation assistance, massage, and transportation cost coverage as essential for trial participation.
Another study explored preferences for the Brain-Spine-Interface (BSI) system, which allows communication between the brain to the spinal cord via a surgically implanted stimulator. Most participants were willing to undergo the surgery for significant functional improvements, emphasizing the importance of comfort and freedom of movement.
The Swedish Needs Assessment gathered input from people with SCI, their relatives, health care professionals and personal care assistants, identifying optimization of specialist SCI care and specific health aspects as top SCI research priorities. Participants noted that current laws and regulations often hinder the implementation of promising findings. The biggest knowledge gap was the complexity of living with SCI, particularly among authorities and non-specialized healthcare providers.
3. Parasport classification needs more research.
Competitive parasport athletes are assigned a classification for their respective sport. However, current classification systems for SCI athletes don’t fully capture the impact of disability, equipment optimizations (e.g., wearing a strap) and training adaptations, leading to challenges in fair competition.
For example, an experienced wheelchair rugby player will develop better sport-specific skills over time. Researchers recommend that measures of disability be generic, rather than sport specific, to ensure fair classification.
4. Comprehensive follow-up care is critical for people aging with SCI.
More people are aging with SCI than ever before and face an increased risk of developing secondary health conditions. Some countries are working to standardize care to support healthy aging for people with SCI. For example, the Netherlands has implemented interdisciplinary SCI follow-up clinics and care networks, as well as monitoring programs that use objective health measurements.
For aging athletes with SCI, they face increased risks for shoulder injuries, cardiovascular issues and pressure injuries, making proper training and medical monitoring essential.
5. Working together leads to improvements in care transitions.
People with SCI often struggle with care transitions due to gaps in communication, coordination, and access to resources. Two initiatives in Alberta, Canada brought together people with SCI, researchers, healthcare providers and policymakers to improve these transitions. They co-developed a standardized model of care focused on better resource access, personalized care plans, new therapies, stronger rehab-to-community connections, and improved education and support. A self-evaluation for people with SCI was also created to help them track their health, function and care experiences and to help guide discussions with health care providers.
6. SCI registries are expanding to include non-traumatic cases.
Non-traumatic SCI (ntSCI) can result from health conditions such as cancer, infection, spinal stenosis, and other underlying causes unrelated to external force or trauma. People with ntSCI may have rehabilitation and community reintegration needs that differ from those of people with traumatic SCI. Traditionally, SCI registries have focused on traumatic SCI, but national registries in Canada (The Rick Hansen SCI Registry) and the United States (SCI Model Systems National Database) have expanded to include non-traumatic SCI.
7. How we measure quality of life matters.
Quality of life refers to various aspects of an individual’s well-being and overall life satisfaction. Researchers use health-related quality of life tools like the Health Utilities Index (HUI) and the EQ-5D-5L, which assess key areas such as mobility, self-care, pain, and anxiety.
One study found that people with SCI thought of health differently when answering the HUI question “Overall, how would you rate your health during the past four weeks?” Initially, half of participants did not consider their SCI-related limitations when answering the question. However, when prompted to do so, their reported health status decreased. This highlights the importance of clear definitions of “health” when measuring health-related quality of life in the SCI community.
8. Women with SCI are a growing population with unique healthcare needs.
Globally, approximately 4 million women are living with SCI, with women representing 20% of the traumatic SCI population. However, research on women with SCI remains limited, particularly in areas like pregnancy, mental health and body composition. A new women’s health resource network aims to close this gap: The Women’s Health after SCI Network (WHSCI Network) in the United States has compiled Healthcare Resources for Women with SCI. Additionally, the Building Provider Capacity for Women with Spinal Cord Injury (SCI) course, offered through Mass General Brigham, aims to improve healthcare providers’ skills in treating women with SCI. Topics include health maintenance, sexual and reproductive health, and pregnancy and peripartum care.
Teri Thorson also attended ISCoS to share her work with the recently launched Women with Spinal Cord Injury Global Initiative. This initiative seeks to gather and share the lived experiences of women with SCI worldwide, promoting these insights within medical, scientific, and peer communities to influence policy and practice. We’ll be sharing more about the Initiative in the upcoming 2025 issue of The Spin magazine.
9. SCI peer staff and organizations need support too!
SCI Peer Mentors provide invaluable support to others with SCI. However, many experience compassion fatigue, which is exhaustion from prolonged exposure to stress/suffering. To help, Canadian researchers worked with SCI BC and other provincial SCI organizations to codevelop a tailored, online 6-week self-compassion program. SCI Peer Mentors who participated reported improved self-compassion, greater effectiveness in their roles and increased resilience against compassion fatigue. Support for SCI Peer Mentors, including self-compassion training, has the potential to help mentors, the mentees they support and organizations (e.g., employee retention, sustainable peer support programs).
Additionally, researchers collaborated with Canadian SCI community-based organizations, including SCI BC, to systematically develop the SCI Peer Support Evaluation Toolkit. Community-based SCI organizations can use the tool to assess outcomes of their SCI peer support programs and services.
10. Online mental health programs work.
Many barriers exist to accessing in-person mental health services. One study on guided internet-delivered cognitive behavioural therapy (ICBT) found that an 8-week ICBT program improved depression, anxiety, self-efficacy, quality of life and pain interference for people with SCI. Participants enjoyed the program and the mental health improvements lasted even 6 months after the program was completed.
11. Mindfulness helps with pain and mental health but must be adapted.
Mindfulness-based interventions may help reduce stress and pain for people with SCI. A study exploring the preferences of people with SCI for online mindfulness-based interventions found that most participants preferred asynchronous (pre-recorded) formats, with sessions twice a week for 6–8 weeks.
Men generally preferred self-guidance formats with more frequent sessions (8-12 weeks, 3 sessions per week), while women preferred group settings with fewer sessions (6-8 weeks, 2 sessions per week). Participants with high levels of pain favoured slightly longer programs (8-12 weeks). Connecting mindfulness and SCI, guided meditation, and regular peer support were preferences for content.
12. Shoulder pain is still a major issue for wheelchair users.
Shoulder health is critical for wheelchair users. Up to three-quarters of people with SCI experience shoulder pain which can affect function and independence. Studies have found mixed results on whether wheelchair athletes have a higher risk for shoulder pain. With more people participating in wheelchair sports now than ever, researchers are exploring how to maximize performance while minimizing risk of overuse injuries through better ergonomic designs and training techniques.
A research team developed the Wheelchair Check, an online screening tool that helps wheelchair users understand potential issues with sitting, wheeling and driving in their wheelchair, such as pain, fatigue and lack of postural support. The tool also offers advice on resolving these issues for users of manual, power-assisted or power wheelchairs.
13. Global rehabilitation efforts are needed to reduce health inequity.
In 2017, the World Health Organization (WHO) launched Rehabilitation 2030, a global initiative to strengthen rehabilitation services worldwide. A follow-up study found that one third of the global population could benefit from rehabilitation, yet many countries lack essential rehabilitation services. At the third Global Rehabilitation 2030 meeting in July 2023, WHO shared newly developed tools to help rehabilitation professionals, researchers and policymakers integrate rehabilitation universally into health systems.
In Canada, there is no national model for SCI care delivery, meaning people with SCI have access to different care and supports depending on where they live. However, three national initiatives are working to standardize SCI person-centered healthcare delivery across the country, with people with SCI at the heart of these multidisciplinary initiatives. SCI BC is pleased to be playing an integral role in the collaborative effort to develop a national model of SCI care for Canada and we will be keeping you up to date on the progress that is being made.
ISCoS’ 64th Annual Scientific Meeting is scheduled for October 2025 in Gothenburg, Sweden. This meeting will be combined with the Nordic Spinal Cord Society’s Biennial Scientific Meeting. Learn more at https://iscosmeetings2025.org/.
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