SCI Care: What Really Matters
SCI Care: What Really Matters
How to Transfer from being a SCI patient to an Individual with SCI
The International Spinal Cord Society and Wellspect present a transformative discussion on changing care perspectives for individuals with spinal cord injuries, featuring leading medical experts Dr Charalampos Konstantinidis from the National Rehabilitation Centre and Dr Christina-Anastasia Rapidi from the General Hospital of Athens. Host Kristijan Kesinovic guides the conversation through critical aspects of rehabilitation and long-term wellbeing, with particular emphasis on bladder management during both acute and chronic phases.
These experts share valuable insights on transitioning from initial care to long-term independence, including crucial discussions on sexual health and fertility options. Dr Konstantinidis addresses fertility possibilities for both men and women, whilst Dr Rapidi emphasises the importance of comprehensive rehabilitation approaches. Their discussion underscores the vital shift from viewing people as perpetual patients to recognising them as individuals with full life possibilities, highlighting the importance of specialised healthcare support throughout their journey.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
You can follow us on Twitter and LinkedIn
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 everybody to the webinar of the International Spinal Cord Society.
Speaker 1:My name is Chris Kasinovic and I'm working at WellSpect as a commercial director. The World Health Organization has changed the terminology from injury to conditions of health, and this is also the topic of this webinar, where we will discuss interesting aspects around having an attitude of promoting an active and healthy life for individuals who sustain a spinal cord injury and not referring to them as spinal cord injured patients. They are only patients during the first acute phase after the injury, and this is actually for a few weeks, and for this we have invited two experts in this field. So may I say a warm welcome to Dr Charalampos Konstantinidis, from Greece. He is a urologist and also the head of urology and neural urology units at the National Rehabilitation Center in Athens. Thank you very much for joining us here today, dr Konstantinidis. Thank you, but also our second expert that we have here today with us, dr Christina Anastasia Lapidi, physician. She is the head of physical and rehabilitation medicine department at the General Hospital of Athens, in Greece. Obviously. Also thank you very much for joining us today, dr Lapidi.
Speaker 2:Happy to be with you.
Speaker 1:So you can see that we have two outstanding experts from Greece here, and I would simply start with you, dr Konstantinidis, can you please explain a bit to the audience what type of patients you typically need in your practice and what you face as the main challenge here?
Speaker 3:In our outpatient unit we face spinal cord injury individuals usually in their chronic phase of this condition. Some of them are referred to us some months after the onset of the injury and others are on a regular follow-up for many years. So our main challenges are to establish an efficient bladder management according to the urodynamic findings, the patient needs and etc. And another challenge is to explain the treatment plan and educate the patients regarding the goals for lower urinary tract management. Due to an informed share decision-making, I understand.
Speaker 1:But, Dr Rapidi, how important is it to have a good bladder management overall, particularly in the acute phase after a spinal cord injury?
Speaker 2:Well, it is very important. I'm working in a general hospital, so we have cases in acute phase and I have to say that the final goal of the rehabilitation team from the beginning of the rehabilitation program is the transfer from being a spinal cord injury patient to an individual with spinal cord injuries. So this is not an easy task and it is a long procedure, starting the first day of the spinal cord injury with the prevention of complications and the proper management of secondary conditions like neurogenic lower urinary tract dysfunction. So the bladder management during the first period post spinal cord injury may determine the bladder management lifelong and so the health-related quality of life of the person with spinal cord injury.
Speaker 1:Dr Rapini, if we now take a look at the acute phase here after a spinal cord injury, why is good bladder management so tricky actually?
Speaker 2:Well, for two main reasons, Knowing the very complex neural control of lower urinary tract, which is a place of interaction between the autonomic and the somatic nervous system, with delicate and complex reflexes maintaining the normal balance function of a lower urinary tract.
Speaker 2:So everything is very complicated. And a second reason is that immediately after the spinal cord injury we have the presence of spinal shock. Spinal shock affects somatic and autonomic nervous system and the reflexes below the level of the spinal condejury where the reflexes are abolished, and one thing that happens is that the spinal shock period does not end in a moment. So there is a gradual exit that may take days or months, with the reestablishment of reflexes, without or with impaired brain control, depending on the enduriling catheter. But in this period we should not be sure that the urine drainage is occurring without complications. We need prevention of complications like urethral trauma, over-distension of the bladder due to blocked catheter, pressure injuries and reduced range of motion of joints like hips, which could give hard time for bladder management later on. And another thing sometimes, for preventing the upper urinary tract, we need sometimes to start medication for the trusor of our activity in time, even with the injuring catheter in place.
Speaker 1:Thanks very much for this elaboration, but allow me Dr Konstantinidis here to follow up a little bit on what Dr Lopidi has mentioned. I mean, obviously an invalid catheter is in place directly after the injury, but what do you think is of the most importance when changing from an indwelling catheter to intermittent self-catheterization?
Speaker 3:I think that the most important is the patient to understand the need of intermittent catheterization and the benefits of the procedure.
Speaker 3:Our goal is to establish an efficient bladder capacity and compliance with medication or other treatment approaches in order to achieve continence with a good capacity and then to educate the patient to empty the bladder before a reflex detrusional contraction lead to incontinence episode With this kind of.
Speaker 3:If we achieve that, we will have a patient without any wire, without any catheter or any forwarding body, and that he or she will be also continent, and this is the main goal. For this purpose, of course, to transit for indwelling catheter to a good internal catheterization plan, we need proper educational material that is directed towards the patients and, of course, we need specialized staff, nurses, who have the first role to introduce the procedure and teach appropriately the patient. It is very important at the first steps to avoid urinary tract infections, to avoid urethral bleeding or other primary complications, in order for the patient not to get disappointed other primary complications. In order for the patient not to get disappointed on one hand and, on the other hand, also to feel that it is safe and comfortable. These are the challenges that we have to face.
Speaker 1:I mean, there are numerous challenges obviously here that you have listed, dr Konstantinidis. But, dr Rapidi, from your point of view, what would you add to the list already a long list that Dr Constantinidis has laid out here?
Speaker 2:Well, I couldn't agree more with Dr Constantinidis, and especially with the part of educating our patient and other family members, because when we have to inform our patient about starting intermittent catheterization, which is the most appropriate management in the majority of the cases, it is something very peculiar that the patient has to face. It is needed to have good educational material and time to communicate this with our patients. But before doing this transition from theurine catheter to the intermittent catheterizations, we do not rush to remove the endurine catheter. We have first to check for hypercalciuria and polyuria and we have to remove the catheter after achieving balanced fluids intake and urine output during daytime and during night, so the total urine volume in a day to be less than 2.5 liters. Also, we have to prevent myogenic detrusional lesion with avoiding high urine volumes from one catheterization to the next catheterization. For doing this in a safe way we need to speculate the specific dysfunction of neurogenic lower urinary tract, of neurogenic lower urinary tract and this, of course, the gold standard for this are the video urodynamics. But in the acute and post-acute phase, in most of the cases we could not have urodynamics from the beginning.
Speaker 2:Of course, at some point we have to do urodynamics, but we do not rush to do urodynamics.
Speaker 2:First of all, the endulant catheter should have been removed, the spinal shock phase should have been over at least after the reappearance of commus medullaris reflexes, because we know that the autonomic reflexes in some cases are delayed.
Speaker 2:Because we know that the autonomic reflexes in some cases are delayed. And of course we keep in mind that if we have also peripheral nervous system lesions then maybe we have no reappearance of reflexes Before this urodynamics. We have a lot of information with the bladder diary and the physical examination according to the international standards of neurogenic classification after spinal cord injury, and so we can make a speculation about the specific type of neurogenic lower urinary tract dysfunction of our patient. Of course it is not always the fact because the level of the injury does not always predispose the specific type. Sometimes we have to consider also the time past spinal cord injury and maybe there are more levels of injury or maybe there are cases where there are lower urinary tract dysfunction before the spinal cord injury, dysfunction before the spinal cord injury. So I can say that urodynamics are the gold standard for assessing but are not the pre-request before starting the blood management program or medication if needed.
Speaker 1:I mean, what sticks out to me here is that you have mentioned several times Dr Rapidi, not to rush. Obviously, it makes sense. It's a very critical phase the patient is in. But, dr Konstantinidis, how soon after the injury do you think it's appropriate to shift to intermittent catheterization and what are the main factors from your perspective to steer this?
Speaker 3:Actually there is no specific time for everyone. We have to individualize, as my colleague Annie said. We have to individualize in any pace what will be the time as soon as possible, and that means that we have to achieve a good bladder capacity, a good compliance, a balanced fluid intake, to know with the bladder diaries what is the out, the fluid intake but also the output of the urine and after that have a good plan of the time of the catheters, good education, and we will start. So I cannot answer at three months or two months or five weeks, but as soon as we can have a good management of the bladder and a good level of education to our patients.
Speaker 1:What is your perspective on this, Dr Rapiri?
Speaker 2:Well, again, I agree with Dr Gostadinidis and we should start as soon as possible, taking in mind the total urine volume per day and during night and all other conditions making the intermittent catheterization program feasible for our patient. It is for the benefit of our patient to remove the intraling catheter, reducing all the complications that accompany intraling catheter, like urinary tract infections, vesicle calculi, urethral trauma, hygiene problems.
Speaker 1:Thank you very much for these perspectives on it, but allow me also to steer a bit the discussion from the timing, from the switch of a foley or indwelling catheter to intermittent catheterization, and taking a bit also a look on the individual who is suffering from a spinal cord injury. Dr Konstantinidis, we know that sometimes individuals with spinal cord injuries are lost from the healthcare system, maybe 10 years roughly, if I remember correctly, after their injury. So what is your specific view on follow-up?
Speaker 3:Dr, I think that education and informed shared decision-making are the key points for a proper follow-up. Everyone with spinal cord injury needs a center of reference for a scheduled follow-up program because sometimes the inadequate management in a GP settings or in an emergency setting or in a general hospital with no such an experience gives the person the idea that nobody can deal with his or her condition, so a regular follow-up is useless. So if the patient needs that there's a center that know his or her condition and can follow up in a regular base, I think it's a good plan to start with dr rapidi, is there anything specifically that we can learn from the acute phase to improve the care also later on?
Speaker 1:knowing and now also understanding what, uh, dr concertinidis shared with us.
Speaker 2:Well, during acute phase it's very important to avoid complications that may complicate the later on bladder management, as I said before, and of course, it is very important to persuade our patient and his or her significant ones that the proper management should be decided for the bladder.
Speaker 2:Management should be decided with our patient, so to be sure that this method be the best for him or her. I would say that the rehabilitation team in the acute phase plays a very significant role in choosing the appropriate management for neurogenic bladder, neurogenic bladder and of course, this will keep our patient more close to a long-term follow-up. But again, I have to stress and me that we need a solid long-term follow-up healthcare system for patients with spinal cord injury and sustainable specialized system. So to ensure the equal access to health services for persons with spinal cord injury, the continuity among healthcare systems is needed, including including primary health care and community rehabilitation services, taking in mind the aging of the person, the changing functional capacity, maybe new concomitant diseases. All these are very important to be faced and give maybe new solutions to our patients with neurogenic lower urinary tract dysfunction.
Speaker 1:That's very interesting insights from both of you. But also when I was preparing myself for this webinar a little bit, I got to understand that, dr Konstantinidis, you also have a great experience in the field of sexual medicine. Can you enlighten us a bit about this please, in the framework of this webinar and the target group you're talking here about?
Speaker 3:I think that, regarding sexual issues of spinal cord disc herniation, all the team, all the rehabilitation team, has to be well informed and everybody can add something for this approach. When to start about this depends on the readiness of any individual After the injury. We have to understand that people need time. They need time to understand themselves and to adapt to a new condition. We have adopted and we follow the PLICIT model for this approach and I will ask for Annie to explain a little bit this PLICIT model.
Speaker 2:Thank you, haralabe, for this. Haralabe knows very well that this kind of model, the PLICIT model, starts from the acute phase. All rehabilitation professionals should be trained to inform the person at the appropriate time that it is possible to have and enjoy sex, to have children. We must open the door for further discussion. And here comes this model, developed back in the 1970s by Annon, offers an approach to communicating with patients about sexuality that allows the clinician to tailor this communication to their own level of comfort and ability, of course.
Speaker 2:So this model has four levels. The first one that is very important to start from the acute phase, is the permission level, where we can in many different ways, make our patient understand that we're open to answer questions about sexual health. And then the level of limited information. Again, here we have the rehabilitation team members to come with some very limited information about the sexual health following spinal cord injury. The next level with specific suggestions. This needs specialized persons to give specific suggestions on dysfunction following spinal cord injury and referring to sexual health, of course. And the fourth level of intensive therapy. It is about sexual medicine specialists to take care of persons with spinal cord injury and sexual dysfunction. All members of the rehabilitation team during the acute, post-acute phase at least give the permission and the limited information to our patients.
Speaker 1:Thank you very much for kind of sharing insights and sharing also this model with us. But talking about sexuality, what about the subject of fertility issues?
Speaker 3:It is true that often these individuals haven't formed their family yet and the question of having children is very important, but also it's very sensitive Regarding women. Usually there are no fertility issues, but awareness is needed for a high-risk pregnancy and this is related to autonomic dysreflexia, especially during labor and delivery. So the high level of paraplegia and, of course, tetraplegia. Women can be maybe easily pregnant, but it is needed a special team of doctors for the last trimester of the pregnancy, their pregnancy and, of course, during the delivery and the labor.
Speaker 3:Going to men actually, men with spinal cord injury face infertility due to more than one reasons. They have erectile dysfunction, they have a jugulatory dysfunction and there are some issues regarding the sperm quality. Talking about erectile dysfunction, that is also good, not only for fertility but also for sexual life. We have a lot of solutions, from medical to other options, and usually the majority of or spinal cord injury can have an efficient erectile function. The ejaculation the proper ejaculation, is more difficult to get achieved and, depending on the level of the lesion, sometimes cannot be achieved spontaneously. So we have a lot of sperm retrieval techniques that we can use to take the sperm and to apply a method for assisted reproduction.
Speaker 3:Under this the majority of spinal cord injury men can achieve fatherhood, and I think that this is a message that we can pass, that nowadays we have a lot of solutions for fertility issues. And please allow me at this point I have to reproduce the inspiring words of one of my teachers in sexual medicine, the Vood Janoten, and he always teaches us that these are the words of one of my teachers in sexual medicine, the Vood Yiannoten, and he always teaches us that these are the words of him. In the case in the care of people with a disability, no approach may be called holistic as long as intimacy, sexuality and fertility have not been adequately addressed. I totally am in the same level for this statement and we try to put this in our everyday practice dealing with spinal cord injury men and women.
Speaker 1:It's a very inspiring quote, dr Konstantinidis, and thank you also for sharing it with us here and to the audience, I guess. So it will be passed over from generation to generation of healthcare professionals. To sum up, what do you think is the most important? So it will be passed over from generation to generation of healthcare professionals. To sum up, what do you think is most important when it comes to the transfer from a view of thinking about a spinal cord injury patient to an individual? I'll start with you, dr Konstantinidis.
Speaker 3:Okay, of course, the healthcare system must support people with spinal cord injury, but this is not enough. All societies, social institutions and community structures have to be aware of these conditions. Accessibility and equality in all social domains are the key points for the movement, for the place of a patient to an individual with a different mobility status. So we don't need only the healthcare system but all the society to adapt and to understand these conditions and to try to improve all of us.
Speaker 1:Thank you very much for this, Dr Konstantinidis. What about you, Dr Rapidi? What is your perspective on this?
Speaker 2:Well, following WHO, the International Classification for Functioning, having overcome emergency and acute conditions demanding inpatient hospitalization and following the initial inpatient rehabilitation program, then we do not refer to patients, but rather to persons with specific health conditions. Of course, all these are only terms and we need these terms to be incorporated and become a reality in our mind, heart, in our societies.
Speaker 1:Excellent. Well, thank you very much also for your take on this, as we are coming closer to the end of this webinar. Actually, just listening to the two of you, it is obvious that with the right knowledge, the quality of life for people living with a spinal cord injury can be improved significantly. I will try to come up, or try to summarize it, with three key takeaways. Just listening to you and also with the learnings that I've had. Would definitely underline is number one, that's, a proper bladder management during the first period of the post spinal cord injury phase may determine the bladder management for the rest of the life of the patients. You also talked about important things during the transition period, like what's to consider when changing from indwelling catheter to intermittent catheterization, particularly with the goal to avoid urinary retraction factors.
Speaker 1:Secondly, what comes to my mind here is your insights about proper follow-up. It is extremely important to spread this in the community and to be aware and to really try to follow up on the advice you provided. And last but not least, is the topic about sexual medicine slash fertility issues, as this is a crucial topic of not only about in our lives or generally in our lives, but also for these human beings who are suffering from a spinal cord injury. So there are available possibilities and getting in contact with the right people who have the right set of knowledge and the expertise can improve the quality of life for them significantly.
Speaker 1:Just want to say thank you very much, dr constantinidis and dr rapidi, for sharing your great insights and particularly your stories from your long experience working in this field with us. I'm very grateful, uh, to have been the moderator for this webinar, and I'm confident that the listeners have gotten a lot of great insights and that there are several concrete things we may do to transfer from a view of spinal cord injury patients to individuals who have all possibilities in life, even after a spinal cord injury. So I wish you all the best for the upcoming holidays and again, thank you very much for your contributions today. Thank you, thank you.