SCI Care: What Really Matters
SCI Care: What Really Matters
A conversation with Allen Heinemann, Jane Duff, Marcel Post, and Ashley Craig about a new research project on the length of stay for rehabilitation
In this bonus episode, we talk about a new federally funded research project that involves ISCoS members Professors Allen Heinemann, Jane Duff, Marcel Post, and Ashley Craig.
They are working on an international comparative study of rehabilitation length of stay for people living with spinal cord injuries. What's the ultimate balance between prolonged stays and swift discharge for spinal cord injury patients?
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The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Welcome to our bonus episode of SCI Care. What really matters the Edinburgh Conversations. I am Dr Ali Jumous, the President of the International Spine Court Society. You are about to hear a selection of interviews recorded live in Edinburgh during the course of the 60 Seconds Escort Scientific Meeting. Each bonus track will have discussions with speakers, delegates, partners, Escort Committee chairs and teams attending the Escort 2023. Join us to find out what the hot topics of the day are within SCI Care. We hope you enjoy listening.
Speaker 3:I am Alan Heimett. I am Professor of Physical Medicine and Rehabilitation. I am in Chicago at North-western University, where I direct the Center for Rehabilitation Outcomes Research at the Shirley Ryan Ability Lab, formerly the Rehabilitation Institute of Chicago. We are here to talk about a new federally funded research project that involves ISCASC co-members, which include:
Speaker 4:I am Jane Duff. I am a clinical psychologist. I work at the National Spine Injury Centre, Stoke Mandeville Hospital, which is part of Buckinghamshire Health NHS Trust, which is in England. It was a real privilege to be invited to join in the grant application.
Speaker 2:I'm Marcel Post. I am a professor of spinal cord injury rehabilitation based in Utrecht, in the Netherlands, and very happy to be part of the project thanks to a long lasting connection with Alan through the RGYS, the Psychological Interest Groups of
Speaker 5:My name is Professor Ashley Craig. I am the professor of rehabilitation studies in the John Walsh Centre of Rehabilitation Research in the University of Sydney. I'm also a senior researcher in the Kolling Institute in the Royal North Shore Hospital of New South Wales, Australia. I have been a long term researcher in spinal cord injury and other types of injury. I am very pleased to connect with Alan being the Chief Investigator in this Government Funded Grant. How about you Alan?
Speaker 3:Well, the opportunity was first announced in the summer of 2022 when the National Institute on Disability, independent Living and Rehabilitation Research said they wanted to fund an international comparative study of rehabilitation length of stay for people living with spinal cord injuries. No details other than a title. They had a date no date listed in terms of when they expected to post it, and when they did, there was six weeks from announcement to deadline, and I had mentioned within the Psychosocial SIG Group of ISCoS that this sure looked interesting and somebody here ought to go for it, and everybody agreed, but we didn't know what it was. And then the announcement came out and my immediate thought was ISCoS has the dream team that's already involved in doing this kind of work. I knew Marcel Post from several different collaborations in the past, but I'm certainly aware of both Ashley's and Jane's research, but had never met them before.
Speaker 5:Except online.
Speaker 2:Except online
Speaker 3:We had Zoom together. Yes.
Speaker 1:Zoom.
Speaker 4:And also we worked together on the ISCASC psychology datasets. That's right. Thank you for that reminder.
Speaker 3:So it was an obvious. Who am I going to turn to? It's the people already contributing to this work. They required three projects. One was a systematic review of the literature on length of stay after spinal cord injury. A second one that lent itself to secondary analysis of claims data or patient outcome data, which my colleague Ann Dyches is leading in Chicago. And the third one, which I'm most relevant to ISCoS in psychosocial and in SIG and psychologist, is how patient experience relates to different lengths of stay. So we began some conversations, all by Zoom, and to pull together an idea that has become this funded project.
Speaker 4:And it's really exciting because it includes patients, family and carer perspectives and also health care clinicians' perspectives, and from my knowledge, I think this is possibly the first time all three have been joined together in a study of this nature. So it would be very rich in terms of information and in terms of our future clinical practice and the services that we work in.
Speaker 3:So those focus groups three each will happen in the UK, Australia, in the Netherlands, as well as in the US and Canada. We have an additional collaborator, Sarah Ahmet from McGill University, who will be contributing to that component.
Speaker 5:Sounds really exciting, and it was a great honour for me to have been asked to produce or to do the Gutmann lecture, which is an honour of Saludwig Gutmann, an outstanding rehabilitation physician who escaped or fled, I guess is the best word, Nazi Germany, and as a Jewish physician he read the writing on the wall but then came to the UK and began an amazing legacy for Spinal cord injury and so the Gutmann lecture is a great honour. This gentleman has also done it, but also it's in his footsteps that we tread. So that what I spoke on was really the importance of psychosocial, which of course, this grant we're talking about is largely also in that. In other words, it's just not a biomedical process. This is really a process that covers the whole of life. If people are going to adjust adaptively after such a catastrophic injury, we need to approach it from every angle and not just medication or surgery or other very hard medical approaches. So it was a great honor and people seem to have liked it, so that's best.
Speaker 3:And so much of what you covered in your lecture is cited in the application we developed, so it was worth it.
Speaker 5:I must have memorised it.
Speaker 3:It's your work and Jane's and Marcel's.
Speaker 4:But I also think, speaking about the Gutmann element, the main drive was psychosocial rehabilitation. It was around sport, but it was also around people becoming taxpayers again, having some sense of meaning and purpose and focus in life, and that's what we all do and you spoke about so eloquently.
Speaker 5:Correct me if I'm wrong, but vocational re-employment is one of the strongest predictors of a good outcome, so he was right on the ball.
Speaker 2:How long was the length of staying in the Gutmann times?
Speaker 4:It was a long time, I think years really, and the whole community around Aylesbury has built up as a consequence of that, because actually it was very young people that then didn't return home to their home communities but actually became a community in itself and grew up around Aylesbury. So we have a lot of adapted housing that surrounds the immediate vicinity of Stoke-Mandeville.
Speaker 2:Yeah, I think length of staying inpatient for your rotation has, I think, halved in the period that I'm working in the field, and the question is, where will it end? And it's a worldwide phenomenon. It has become shorter everywhere, at least in the Western world. So I think there's also a very relevant topic for ISCoS as the worldwide community of spinal injury and rehabilitation, to address the topic as a priority platform to make this kind of comparable comparisons.
Speaker 5:I think very strongly too, because of COVID, the COVID period in Sydney, Australia, for instance. We had three main units and one of the units essentially shut down. That catchment was all to the south of Sydney and therefore putting pressure on the Royal North Shore catchment and indeed what happened was a lot of those people didn't go to rehabilitation at all. They're farmed out to general medical wards. Who knows what happened. Talk about length of stay. Some of them didn't get stayed at all to use a silly word.
Speaker 3:I think part of the reason lengths of stay have become shorter is technically. We've gotten better at preventing complications that used to keep people longer. So pressure ulcers, urinary tract infections, pneumonia we know effectively how to manage the technology, the medication, it's all much, much better now as well. Behavioural interventions during the hospital stay. We've also gotten better coordinating services so that more often there's a place to go. There's a discharge plan that involves somebody who's going to be in a caregiving career kind of role. So part of the shortening is a good thing. But I think in the US oftentimes the stays are so short and I think this is the funder's interest that patients don't get the benefit that they used to of rehabilitation and leave unprepared for life using a wheelchair.
Speaker 5:So it's a tension between institutionalisation too long and too quick. Somehow we've got to get the balance and hopefully this brand will help us do that.
Speaker 3:Yes, well, I think we're going to learn that accessible transportation, accessible homes, carer involvement, are all positive things that help discharge happen sooner.
Speaker 4:And certainly talking with patients about that preparedness. You know going from somewhere that has a highly structured environment into something that's unstructured, anticipating what you'll be doing the first month, two months, three months, having a plan for perhaps six months down and connecting with all those community facilities ahead of discharge. Those are some of the factors I know I talked about in my clinical practice with people, but I think there are many, many others and this could really shine a light on that.
Speaker 3:Yes, absolutely.
Speaker 2:And the data sets developed in the context of ISCoS and the psychosocial SIG, I hope will help to make it more visible how length of stay relates to the process of adjustment, which we all know takes more time than inpatient rehabilitation at all and we're going to monitor and trace the process and bring it back to the ISCoS community.
Speaker 3:The project also builds on the work of ISCoS and the exam and how it's evolved over time and it's been utilised in what, 22 countries so far? If that work hadn't been done, we would be in a lot more of a developmental stage in planning the next stage of this project. Following the focus groups, we'll have an international survey that's informed by the focus group findings as well as the examination.
Speaker 5:Sounds great.
Speaker 3:Let's do it.
Speaker 4:Let's do it. So it's lovely that we're all here this year apart from Zora, obviously but to have the first crucial meeting that we had yesterday get a plan in action and go from there and also report our findings back in terms of the critical hopefully next year. But there after you and engage more people in communities as a whole.
Speaker 3:Let's look forward to 2024 and gathering in Belgium.
Speaker 1:We hope you have enjoyed listening to our bonus collection of Edinburgh Conversation from ISCoS 2023. As always, you can listen to these episodes and all episodes from the podcast provided of your choice. If you have any questions or suggestions, we'd love to hear from you. Email them to admin@iscos. org. uk. ISCoS also invites you to the 63rd ISCoS Scientific Annual Meeting from the 22nd to the 25th of September 2024. To save the date and more details will follow on the 2024 themes submitting an abstract and early birth registration. Thank you for listening.