By Julie Bernhardt, Principal Research Fellow
Florey Institute of Neuroscience & Mental Health
As a clinician researcher it’s been clear to me for some time that too little attention has been directed to the challenges facing younger stroke survivors. We neither have a service dedicated to their specific needs, nor strong, global endeavors around prevention, understanding and treating younger stroke survivors.
At the Florey Institute of Neuroscience and Mental Health here in Melbourne, Australia, which is based at one of Melbourne’s large public teaching hospitals, we’ve been talking about the challenges facing researchers and survivors in this space in earnest for the past two years. Neurologist Vincent Thijs who heads up the stroke servicehas a specific interest in the genetic of young stroke. He wanted to start a dedicated young stroke clinic in the hospital – a great idea, but as we sat and started planning, we asked ourselves “What do younger stroke survivors and their families want in a service?” We understand at the research end the major gaps in our understanding. We even understand that there is a problem with educating health workers about the fact that young people can have stroke too. What we didn’t know was the gaps and unmet needs in this group of survivors.
We advertised a number of projects for young medical students that were focused on ‘young stroke’ and in the first year we had two terrific soon-to-be-doctors apply for the projects. This year we’ve had Jessica Shipley conducting in depth interviews with stroke survivors and their carers to hear their stories, understanding their unmet needs and get their advice about a young stroke dedicated service. David Sapuppo developed an unmet needs online survey and pilot tested it with over 70 respondents. Some of you reading this will have participated – thanks! – and we’ll send you an update when the results are in. For both of these projects we limited the participants to people under the age of 55 at the time of stroke. This seems a bit random as a cut off, and it’s not easy to decide, but 65 years old which is common in “young projects” just seems a bit silly. It could easily be argued that a 15-29 age range for youth and young adult would be good, and a 30-45 age range would probably capture those with similar life stages, similar possible causes and challenges. Our problem is that we don’t have big enough data sets to help us really work out at a biological or needs level what the right cut points might be … but I digress. The challenge is understanding what people need, when and how we might in the future identify at risk people before they have stroke (prevent). While there are number of larger projects on the horizon, we wanted to address the issue of a stroke service and what people might want.
Our top line results are of course that everyone is different, in their experiences, their challenges, their unmet needs, but common themes prevail and there was not a single respondent who didn’t feel like a dedicated service for younger people would be better than current care. Of course, with my research hat on, I have to admit that the people who participated in these projects won’t represent everyone, they volunteered for the projects after all and that probably means that had something they wanted to say. BUT, they provided valuable feedback and suggestions. We’ll tell you more when the results are written up. For now, we want to move forward and be flexible in the delivery of the service, allowing for telehealth consultations and programs delivered over the internet. A productive meeting with a young cancer service means that we have a service model that has worked here in Australia that we can aim to replicate, learning from them as we move forward. Now all we need is some seed funding to get a person to pull it together. We know that in Australia about 20% of our stroke patients will be under 55 years old. It’s time we worked out a model of support that meets their needs, and a research framework that lets us continue to work to understand and treat young stroke. We’ll keep you posted!