SCI Care: What Really Matters
SCI Care: What Really Matters
Experiencing cauda equina syndrome and its aftercare in the UK
Points:
- Cauda equina syndrome (CES) is a common emergency condition that neurosurgeons and spine surgeons deal with.
- The long term consequences and the impact on the person dealing with CES are poorly defined.
- This podcast explores the impact of CES on the person, including pain and autonomic dysfunction, and management strategies which can be implemented by health care professionals.
Nish's Affiliation: Nisaharan Srikandarajah is a Consultant Neurosurgeon specialising in complex spine at The Walton Centre and an Honorary Senior Clinical Lecturer at The University of Liverpool
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Hello, I'm Michael Failings, Professor of Neurosurgery at the University of Toronto and editor-in-chief of Spinal Cord, uh, which is the signature journal of the International Spinal Cord Society or ISCOS. And um we do a regular uh podcast uh series um uh through ISCOS to discuss um uh relevant articles uh from spinal cord that I think are of uh interest um uh to the broad uh spinal cord uh community. And uh today I'm I'm very pleased uh to welcome uh Dr. Nish Shrikanda Raja, who is from the Department of Neurosurgery and Faculty of Health and Life Sciences at the University of Liverpool. Welcome, Nish. And um uh uh Dr. Shrikanda Raja um uh first authored uh a very interesting uh uh uh article related to cauter quina syndrome and this was um a qualitative study of experiencing cottaquina syndrome and its aftercare in the uh United Kingdom. And um uh Nish, perhaps you could uh summarize uh the key points of this article.
SPEAKER_01:Yeah. So um in essence we looked at the literature beforehand um and we found that uh in terms of the patient voice, there there wasn't much there uh for corduaquina syndrome. Um and this was part of uh the process of uh looking into what was important for them uh when it came comes to uh looking at Cordoaquina syndrome and the outcomes for it. Uh so we decided to do uh a qualitative uh interview uh whereby we do semi-structured interviews um and we find out uh what are the main features and what are the uh outcomes that they prioritize are the most important for them. Um and it was a unique article in a way in the literature because essentially it's the first paper in the literature that looked at patients with cordocoina incomplete and cordoquina complete, so different severities of cordoquina, and it looked at the short and long-term outcomes for them as well. Um so that was the first paper in the literature to do, and uh we decided to go for nature because it had a good base of covering uh patient outcomes as well. And when we looked into it with these patients and talked to them and uh we coded what their most important outcomes was, it came up with you know four very strong themes that were happening in Cordoquina syndrome. Um and the main themes were varying priorities of uh physical health, you know, uh fragmented healthcare system that they were dealing with, the process of adjustment by having this condition and the uh anticipatory anxiety and diminished self-worth. And essentially, if you look at these themes, it's kind of um some of them are in parallel with chronic um conditions, um, neurological conditions. And the issue is it was an important paper because actually the way we handle Cordioquana syndrome is as an acute condition. It comes in, we it's the most common emergency procedure we do in spite out of ours. Um, and in actual fact, when we follow up in clinic, we were finding that we weren't really giving the credence we need to for these patients. So we said, okay, fine, you know, the operation went well, you're fine, we'll discharge you. But in actual fact, they were having a lot of issues that were continuing, and this paper highlighted all of them in their own words. So it highlighted it's actually a chronic condition which is not really um managed appropriately postoperatively. So that that was the kind of take-home message of this uh paper, which we're doing a lot of things now to look at um because of what this paper had highlighted.
SPEAKER_00:Yeah, the themes of this paper really uh you know resonated with me. And as a neurosurgeon who deals with cauda quina syndrome, I I thought that the approach that you and your co-authors have taken in terms of um interviewing people with lived experience um was really quite uh uh revealing. So taking a step back, um, you know, you have a very defined uh interest in cauda quina syndrome. What has stimulated your your interest in this um uh uh a condition and w where do you feel the critical knowledge gaps are?
SPEAKER_01:Yeah, so um actually when I was training uh as a resident, um I found that there was um a lot of research within sort of brain tumors or uh head injury. Um and what I found was in spine surgery especially uh the evidence, the level of evidence wasn't high in spine surgery. So um, and then I kind of looked at the most common operation which I was doing uh with the uh seniors was Cordoquina syndrome out of ours. And I looked at the level of evidence, and it was level of evidence four and three. And I thought this is an area which essentially needs a cleanup and a better management pre-operatively, timing of operation, and post-operatively, um, which is not too dissimilar to you know what you have achieved with spinal cord injury and myelopathy. And I thought this was an area which was unexploited and unlooked at. So I felt it was really in need of a cleanup in terms of the whole process. So that's why I felt the knowledge gap was I think we need to define what it was, I think we need to define what the timing was, we need to define the outcomes which are important for healthcare professionals and patients, which this paper uh really steered its way towards developing the core outcome set, which has been published as well for Cordo-Aquana syndrome. Um and so using that, if we define the outcomes which are important, um, and then the next step is we can define which which are the best way of measuring them, the measurement instruments, then we can design the the best studies, you know, higher-level uh studies for this condition and get proper answers uh and management plans. And I think it's part of the whole process. And I I felt this condition deserved that, because it affects young working age adults, and you know, if they get a disability, you know as well as I do, prof, it's a lifetime, and hence why medico legally it's such a big concern.
SPEAKER_00:Well, I applaud your efforts to uh focus on this uh a condition, and and it's interesting because this is a um uh a quite a common uh emergency condition that um spine surgeons and neurosurgeons deal with, and then surprisingly there there are areas of lack of evidence that you have um defined. Um what um critical knowledge gaps did you identify um in this uh a study and and where might you want to move um things forward?
SPEAKER_01:Yeah, so um from this study, essentially classically before um we found that a lot of papers in Cordo-Aquana Syndrome um were the departments, the the research departments choosing what they felt was important. So there was a lot of focus on bladder outcome um or for example mobility. Um and what this um paper did was it highlighted actually there's a lot of domains within quality of life that are really affecting the patients uh in terms of uh in terms of the pain, in terms of the activities of daily living. These are the things which were really upsetting them and affecting them um uh after surgery, but they weren't really being looked at or addressed in papers. So that really came about from this qualitative paper with the patients. And then when we put that forward towards healthcare professionals and patients to ratify it for the core outcome set, you know, they said, of course, this is this is a critical issue. We need to be looking at this. So therein lies it it highlighted such a critical knowledge gap, which we weren't looking at before, because nobody had done this before. So actually, this is the first time in the literature where we started looking at that, and that highlighted that massive knowledge gap which we need to look at in further research studies, and it highlighted the fact that we were dealing with cordial quina syndrome correctly as an acute issue, but we weren't managing it as a chronic condition how it should be. And so, from that critical knowledge gap, what we're trying to do now is post-operatively develop an innovative clinic which can address the issues that these patients have in unison with the charity groups. So it's really paved the way this paper has to looking at the issues which weren't being addressed before.
SPEAKER_00:I see. So in interesting. And um I I guess you've kind of touched on um perhaps some of the next steps that you wish to take. And um uh but perhaps you could um uh uh highlight um one of the elements that you touched on thematically, which was um uh a fragmented healthcare service, and this is using uh your own phrasing from the article. Um what do you mean by this and and what systems issues do you identify could be addressed?
SPEAKER_01:So these patients um uh after their operation, they have uh a lot of them have long-term issues when it comes to their bladder and bowel function and their sexual function as well, and their mental health. Um, and the issue is when we see them postoperatively, um they kind of it's a hidden disability in a way, because these patients are walking. It's not as obvious as a spinal cord injury where you come in in a wheelchair and they and you know there's that obvious visual thing where you think, okay, they need help. Whereas when it comes to quarter corner patients, they're generally they can be walking, even with a walking stick, a lot of them, mostly. So it it's it's classified as a hidden disability. You don't really know what's going on. But as soon as you see them walking into clinic, a lot of clinicians and a lot of allied healthcare professionals think, great, you know, the patient's recovered, they're mobilizing, let's get them discharged. And also with resource limitations, um, especially within government healthcare systems, it's very hard to cover all other avenues. So the patients were saying, you know, I've still got bladder issues. Uh I haven't been seen uh properly by a urologist or worked up, I've got bowel issues that I'm dealing with it myself, you know, at home trying to manually evacuate, and I've been given a bit of advice, but I don't feel it's going well. And then in terms of their sexual dysfunction, I mean, this is an area which we don't we hardly tend to talk about. You know, you might think it's the taboo associated with it, but there's actual sexual health advisors uh and psychologists that could be referred to, which the charity is doing, but we don't do that um classically. Um so there are all these long-term issues that basically they weren't getting funneled to the right patient. Another one is neuropathic pain, which they were dealing with, and actually, on even if the scan is fine, you know, we could refer to a functional neurosurgeon for consideration of spinal cord stimulation early on, but even that pathway wasn't happening. Um so I think there's a lot of there's a fragmented healthcare system in that these issues aren't identified and passed on, and there's no one to feed that back to and holistically look at all of these angles as well. Um, so that's that's the term, fragmented healthcare system. And that was from the patient's mouth, you know?
SPEAKER_00:I I I see, and it it seems like this is an area that could be addressed because I would think that all of the uh elements that you've described that would be required to facilitate care exist within um, say, the NHS or other health systems, but they're not um uh organized in a fashion to facilitate uh the care. And and I think that might be one of the key take-home uh messages from uh from your from your article. Um uh Nish, any closing comments that you'd like to make?
SPEAKER_01:Um I would just like to say it's um you know, it's it was a seminal piece of paper. It's been published in a uh a very uh reputable journal that um uh uh considers uh patients' opinions important um because nature publishes qualitative articles, and I think that's very important. Journals tend to shy away from that. Um so you know, uh not only are we very happy we got to express what the study showed, I think this will help um furthering the research um and taking it in the right direction. So um thank you.
SPEAKER_00:Oh, my uh my my pleasure. So um I'm going to thank uh Dr. Nish Shrikandaraja, who has kindly uh um uh shared his uh thoughts on a very interesting article entitled A Qualitative Study of Experiencing Cauta Aquinas Syndrome and its uh Aftercare in the United Kingdom. This is available um uh as an open access uh editor's choice uh uh article. I would encourage all of you to look at the article and to reflect uh on this, and I would encourage uh all of you uh to listen regularly to the podcast features uh that we do uh through um ISCOS. Uh so on that uh uh note um I I wish to thank uh uh Nish and uh for participating in this uh discussion and all of you for uh uh for tuning uh in. Thank you so much.