Targeting research to patients' most pressing needs
Dr Xavier Jordan. © CRR
Focus on paralysis (2/2). Dr. Xavier Jordan has been treating paraplegics for 15 years – a specialization he chose with “passion and conviction.” He has been head of the para- and tetraplegic unit at the Clinique Romandie de Réadaptation in Sion since 2013, and he works closely with the two EPFL chairs based at the school’s Sion campus.
What generally happens when someone becomes paraplegic?
Paraplegia usually results after someone’s medulla becomes damaged – due to a car, diving or skiing accident, for example. The person typically goes through several phases. First, a refusal to accept the handicap, even as they begin physical therapy. Then grief over what has been lost, acknowledgement of their new situation and finally imagining a future. As their doctor, I support them through all these phases, from the intensive care room through the rest of their lives.
What do you think of the latest scientific advancements?
When I look at how we’re now able to combine electrical stimulation, chemistry, stem cells and robotics, I find that incredible, although I realize it’ll be years before all paraplegics can benefit from the technology. Back in the 1980s – before we were able to operate on spinal cords – we couldn’t tell patients that they had a chance at recovery. But today we can, and doctors would be remiss if we said otherwise. Scientists have broken new ground and opened up entirely new prospects for patients. Soon we will be able to repair neurological damage by treating the problem directly, rather than just helping patients cope with it as we do currently. As doctors, we have a responsibility to stay informed and tell our patients about these new opportunities.
Do you feel researchers are working on the right technology?
Researchers have a very clear vision of what they want to develop. The problem is that patients are interested in what’s possible, not what’s probable. Today the idea that technology will improve patients’ lives is making our job more complicated. Some patients manage to tell themselves they should stay realistic, but most aren’t able to remain objective. The reaction is not the same. Someone who has just lost the use of his legs won’t have the same wishes as someone who has been in a wheelchair for 25 years. The latter will have accepted the wheelchair as part of who he is, his day-to-day life. It’s not easy to adopt the perspective of someone who’s paralyzed – how they view the world and their place in it. That’s something doctors who treat paraplegics have a better grasp of and can share with scientists.
What role do you think you should play in research?
I don’t believe that doctors should interfere with fundamental research, but I think we should get involved as soon as technology gets to the application stage. Sometimes I feel like I’m on the sidelines – researchers ask me to provide patients without thinking about the bigger picture. Technology isn’t always translated into clinical applications the way I would like. People talk a lot about the ability to walk again, but who said that that’s the main goal of all paraplegics? There are at least a dozen other difficulties these patients must struggle with, whether related to their bladders, intestines, joints or bed sores, for example. When I ask patients what they would want me to fix if I could wave a magic wand, the ability to walk is rarely at the top of their list. But if research on restoring motor function leads to improvements in other bodily functions, then we can improve patients’ independence and quality of life. To me, that’s essential.
What should researchers watch out for?
They must be sure to take ethical considerations into account as they develop new technology. Researchers should work hand in hand with practitioners. There are a thousand different angles to consider, and the tough questions shouldn’t be avoided. For example, what is the cost-benefit breakdown? How independently will patients be able to make decisions? How will they be able to form informed opinions on a new technology? What are researchers’ priorities versus those of patients? And what about unintended consequences? What if, for example, a surgeon accidentally puts an electrode in the wrong spot but the mistake ends up improving the patient’s life – what should we do then? Remove the electrode so as to follow the protocol, or leave it in? And who will pay for everything? An exoskeleton at a clinic can help several patients in physical therapy. But afterwards, who can afford a CHF 70,000 device?