Experiencing cauda equina syndrome and its aftercare in the UK

WEBVTT
00:00:11.039 --> 00:00:28.960
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.
00:00:29.199 --> 00:00:50.799
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.
00:00:51.039 --> 00:00:55.920
And uh today I'm I'm very pleased uh to welcome uh Dr.
00:00:56.159 --> 00:01:06.000
Nish Shrikanda Raja, who is from the Department of Neurosurgery and Faculty of Health and Life Sciences at the University of Liverpool.
00:01:06.159 --> 00:01:07.040
Welcome, Nish.
00:01:09.519 --> 00:01:12.079
And um uh uh Dr.
00:01:12.239 --> 00:01:30.959
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.
00:01:31.200 --> 00:01:38.719
And um uh Nish, perhaps you could uh summarize uh the key points of this article.
00:01:40.719 --> 00:01:41.200
Yeah.
00:01:41.519 --> 00:01:52.959
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.
00:01:53.200 --> 00:02:04.640
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.
00:02:04.799 --> 00:02:19.520
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.
00:02:19.680 --> 00:02:35.759
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.
00:02:36.000 --> 00:02:45.039
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.
00:02:45.280 --> 00:02:57.439
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.
00:02:57.599 --> 00:03:13.199
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.
00:03:13.360 --> 00:03:22.719
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.
00:03:22.879 --> 00:03:29.599
And the issue is it was an important paper because actually the way we handle Cordioquana syndrome is as an acute condition.
00:03:29.680 --> 00:03:35.280
It comes in, we it's the most common emergency procedure we do in spite out of ours.
00:03:35.520 --> 00:03:43.599
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.
00:03:43.759 --> 00:03:48.479
So we said, okay, fine, you know, the operation went well, you're fine, we'll discharge you.
00:03:48.560 --> 00:03:54.960
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.
00:03:55.199 --> 00:04:02.479
So it highlighted it's actually a chronic condition which is not really um managed appropriately postoperatively.
00:04:02.639 --> 00:04:12.159
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.
00:04:12.879 --> 00:04:16.959
Yeah, the themes of this paper really uh you know resonated with me.
00:04:17.040 --> 00:04:33.199
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.
00:04:33.439 --> 00:04:40.560
So taking a step back, um, you know, you have a very defined uh interest in cauda quina syndrome.
00:04:40.639 --> 00:04:51.759
What has stimulated your your interest in this um uh uh a condition and w where do you feel the critical knowledge gaps are?
00:04:53.120 --> 00:05:07.439
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.
00:05:07.600 --> 00:05:16.720
Um and what I found was in spine surgery especially uh the evidence, the level of evidence wasn't high in spine surgery.
00:05:16.959 --> 00:05:25.759
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.
00:05:25.920 --> 00:05:29.920
And I looked at the level of evidence, and it was level of evidence four and three.
00:05:30.079 --> 00:05:46.399
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.
00:05:46.560 --> 00:05:50.959
And I thought this was an area which was unexploited and unlooked at.
00:05:51.040 --> 00:05:55.040
So I felt it was really in need of a cleanup in terms of the whole process.
00:05:55.279 --> 00:06:16.720
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.
00:06:16.959 --> 00:06:36.480
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.
00:06:36.560 --> 00:06:38.879
And I think it's part of the whole process.
00:06:39.040 --> 00:06:51.680
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.
00:06:52.639 --> 00:07:18.399
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.
00:07:18.639 --> 00:07:31.839
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?
00:07:34.480 --> 00:07:48.319
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.
00:07:48.480 --> 00:07:55.040
So there was a lot of focus on bladder outcome um or for example mobility.
00:07:55.360 --> 00:08:11.600
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.
00:08:11.759 --> 00:08:21.600
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.
00:08:21.839 --> 00:08:26.560
So that really came about from this qualitative paper with the patients.
00:08:26.720 --> 00:08:36.639
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.
00:08:36.720 --> 00:08:38.240
We need to be looking at this.
00:08:38.480 --> 00:08:46.639
So therein lies it it highlighted such a critical knowledge gap, which we weren't looking at before, because nobody had done this before.
00:08:46.799 --> 00:09:04.879
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.
00:09:05.039 --> 00:09:17.360
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.
00:09:17.519 --> 00:09:24.080
So it's really paved the way this paper has to looking at the issues which weren't being addressed before.
00:09:24.480 --> 00:09:25.039
I see.
00:09:25.200 --> 00:09:26.399
So in interesting.
00:09:26.639 --> 00:09:34.159
And um I I guess you've kind of touched on um perhaps some of the next steps that you wish to take.
00:09:34.320 --> 00:09:54.480
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.
00:09:54.720 --> 00:10:02.799
Um what do you mean by this and and what systems issues do you identify could be addressed?
00:10:04.000 --> 00:10:17.360
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.
00:10:17.600 --> 00:10:26.960
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.
00:10:27.279 --> 00:10:37.200
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.
00:10:37.440 --> 00:10:44.559
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.
00:10:44.799 --> 00:10:47.600
So it it's it's classified as a hidden disability.
00:10:47.679 --> 00:10:49.440
You don't really know what's going on.
00:10:49.519 --> 00:11:00.240
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.
00:11:00.480 --> 00:11:08.720
And also with resource limitations, um, especially within government healthcare systems, it's very hard to cover all other avenues.
00:11:08.960 --> 00:11:12.720
So the patients were saying, you know, I've still got bladder issues.
00:11:12.799 --> 00:11:27.039
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.
00:11:27.200 --> 00:11:32.639
And then in terms of their sexual dysfunction, I mean, this is an area which we don't we hardly tend to talk about.
00:11:32.799 --> 00:11:45.360
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.
00:11:45.600 --> 00:11:52.399
Um so there are all these long-term issues that basically they weren't getting funneled to the right patient.
00:11:52.559 --> 00:12:05.279
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.
00:12:05.600 --> 00:12:18.720
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.
00:12:19.120 --> 00:12:22.320
Um, so that's that's the term, fragmented healthcare system.
00:12:22.399 --> 00:12:24.399
And that was from the patient's mouth, you know?
00:12:24.799 --> 00:12:48.559
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.
00:12:48.799 --> 00:12:56.320
And and I think that might be one of the key take-home uh messages from uh from your from your article.
00:12:56.559 --> 00:13:01.120
Um uh Nish, any closing comments that you'd like to make?
00:13:02.799 --> 00:13:08.000
Um I would just like to say it's um you know, it's it was a seminal piece of paper.
00:13:08.080 --> 00:13:20.720
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.
00:13:20.879 --> 00:13:22.720
Journals tend to shy away from that.
00:13:22.960 --> 00:13:34.799
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.
00:13:34.960 --> 00:13:36.720
So um thank you.
00:13:37.440 --> 00:13:40.080
Oh, my uh my my pleasure.
00:13:40.399 --> 00:13:44.320
So um I'm going to thank uh Dr.
00:13:44.720 --> 00:14:01.679
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.
00:14:01.840 --> 00:14:08.960
This is available um uh as an open access uh editor's choice uh uh article.
00:14:09.120 --> 00:14:24.240
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.
00:14:24.559 --> 00:14:36.960
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.
00:14:37.279 --> 00:14:38.559
Thank you so much.