WSC 2026 | Outcome prioritization by people with lived experience of stroke in relation to the COSMOS scale

This was a very important exercise for us to undertake. COSMOS, the Canadian Outcome Scale for Minor Stroke, is a new outcome instrument that we published about a year and a half ago, and that ranks post-stroke outcomes from zero to six in a manner that’s deliberately similar to the modified Rankin scale, but it focuses on patients that have milder degrees of disease severity so that we can try and capture things like return to work, return to hobbies and passions, caregiving responsibilities, other sorts of personal responsibilities that we’ve previously heard are deeply valued by patients. However, the actual ranking of COSMOS was put together by a team of stroke researchers and physicians, not by patients. So we wanted to see how the actual ranked outcomes compared to how patients who didn’t know anything about the scale would rank some hypothetical outcomes for a given case. So each patient received a collection of cases, they were given in random order, you know, various potential outcomes of that stroke that we knew reflected the different ranks of COSMOS, but they were presented in random order to the patients and essentially they had to shuffle them, right? Just to say, well, what do I consider the worst outcome? What do I consider the best outcome? And so we compared that rank order with what the official COSMOS order is. And what we found very interestingly was that there was, for the most part, a close correlation between the COSMOS ranks and what patients selected. And importantly, there was also a close agreement among the patients themselves as to the way in which they ranked outcomes. What was interesting and perhaps a bit unexpected was how much the patients valued loss of their ability to perform certain personal or caregiving responsibilities over and above actually their ability to perform certain instrumental activities of daily living for themselves. And the way that COSMOS is currently structured, the worst rank, rank six, is when someone now needs help from someone else or has demonstrated a bit of loss of independence for one or more instrumental basic activities of daily living. Generally speaking, as physicians, we agree that once that type of loss of functional independence starts to happen, people have progressed beyond what in a conventional MRS sense we’d consider an MRS 0 to 2. So you’ve progressed beyond that. And so we deliberately put the worst rank as a COSMOS 6, reflecting this loss of independence. However, for the patients themselves, generally ranked the outcome just before that, which is inability to perform some important personal or caregiving responsibilities as being something that would bother them the most. The way we look at these results, it doesn’t necessarily mean that we need to change how the scale itself is structured. To me, it validates the fact that we have paid attention to these other activities that are presently not captured in the MRS as part of the scales design. And to me, this tells us something about the nature of people, that if they have responsibilities towards others and they have certain tasks that they’ve taken on for their families and their households, the inability to do that weighs really heavily on them, perhaps even more so than their ability to take care of themselves. So to me, it actually tells us something quite remarkable about how our patients think about themselves in relation to the people around us.

This transcript is AI-generated. While we strive for accuracy, please verify this copy with the video.