Ep. 216: NEUROGED Guidelines

00:00:00: Welcome to EANcast, your weekly source for education research and updates from the European Academy of

00:00:18: Neurology.

00:00:34: how practicing neurologists should deal with the assessment and treatment of neurogenic urinary and sexual symptoms.

00:00:43: My guests today are Professor Zalesz Paniker, professor in Neuroneurology and Clinical Neurology at UCL in London.

00:00:51: And clinical leader of the Department of Neuro-Neurologies.

00:00:55: And Professor Mario Habek head of the Referral Center for Dermalignating Diseases of the Central nervous system or Autonomic Nervous System Disorders in Zagreb.

00:01:06: Thank you for joining us today!

00:01:13: So, I would like to ask you the first question.

00:01:19: Why do think it was so important to have guidelines for managing your genital symptoms?

00:01:26: After all we are neurologists and not urologist.

00:01:31: The numbers speak for themselves.

00:01:33: if look at data More than ninety percent of our MS patients have reported urinary problems.

00:01:41: Nearly a hundred per cent of our spinal injured patients report the problem.

00:01:44: and if we look at other neurodegeneration, publish figures around forty to fifty.

00:01:52: more recent studies suggest that they're also.

00:01:55: the numbers approach nearly eighty ninety percent.

00:01:58: so the burden of symptoms of high, the impact of quality life is high and a question as he really manages these urinary symptoms.

00:02:08: Neurologists are quite adapted.

00:02:11: managing non motor symptoms of their neurological patients and urinary and sexual problems could actually be seen as an extension of those non-mortar symptoms.

00:02:22: Till recently, there was really nothing much in terms to a framework for neurologists to follow.

00:02:28: you had guidelines from August organizations such the European Association of Urology or from NICE and AUA The American Neurological Association.

00:02:41: however they were designed for urologists.

00:02:45: And so a neurologist who would actually wish to follow the framework, will quickly find that they'll be out of their depth and hence the need for having guidelines that's designed by neurologists-for neurologists in sort of the genesis of the neurogid

00:03:01: guidelines.".

00:03:03: Okay!

00:03:05: Professor Habek, Mario?

00:03:06: For a PC neurologist in a general clinic, what are the key take-home messages from the neurojet guidelines that could immediately change their way they assess or manage urogenital symptoms?

00:03:20: Well I think that most important message is actually quite simple.

00:03:27: Urogenical symptoms are extremely common in neurological diseases but often under recognized and under discussed.

00:03:33: so first Take home message would be that neurologists should actively ask about urinary and sexual symptoms.

00:03:41: As Jalesh already mentioned, many patients will not bring these issues up spontaneously either because they feel uncomfortable or because they assume nothing can be done about this problems.

00:03:51: But the simple screening questions during the consultation can identify problems that significantly affect quality of life for these patients.

00:04:00: The second message is that basic evaluation and should-be done by neurologists as already mentioned by Jaleshe.

00:04:06: Neurologist does no need complex test initially.

00:04:10: a few targeted questions about storage and voiding symptoms, sexual function.

00:04:15: And in some cases the bloody diary or simple questionnaire can already guide you into first step of management problems that neurological patients are having.

00:04:24: And third, what the guidelines are emphasizing is that many treatments can be initiated by a neurologist already at first visit from the patient to neurologists.

00:04:36: Like lifestyle advice and adjustment on medications, pelvic floor measures or first line pharmacological treatment as well can often started by neurologists in beginning of treatment process with patients.

00:04:51: And then finally, an important point is also collaboration.

00:04:55: Neurologists do not have to manage everything alone.

00:04:57: We have a urologist as the consultation specialist where we can involve them or gynecologists for females, rehabilitation specialists teams that can help manage difficult cases where we need collaboration with other teams.

00:05:15: So if I had to summarize the key change in practice, these guidelines are offering is first to ask about symptoms routinely.

00:05:24: So this should be a routinely done by every neurologist.

00:05:28: during every consultation, we can perform basic structure assessments, initiate simple treatments where appropriate and then collaborate with other specialties when needed because even these small steps could make significant difference for our patients that are suffering from urological symptoms.

00:05:47: Excellent thank you so much!

00:05:51: I remember the first thoughts about producing a guideline for practicing neurologists, about the treatment of bladder and sexual symptoms were spent in Oslo back in two thousand eighteen at the EAN Congress.

00:06:08: And it was a long way to reach the finish line last year with the publication after EAN, IFAS, ICEN and neurojet guidelines.

00:06:18: May I ask you, what did this long process of guideline creation tell you about working together with other disciplines?

00:06:30: Yes.

00:06:31: It was a backroom conversation that initiated it and we appreciated early on the need to work And with the collaboration between EAN and INS, The International Neuro urology Society.

00:06:52: It provided an opportunity for different specialists to come together.

00:06:57: I think from the autonomic nervous system perspective there had been collaborations with cardiologists in your projects but working with surgeons is slightly different because physicians have different personalities.

00:07:10: And it was interesting how through this collaboration, actually we came together and you would have the same problem posed but the physician will have an approach that's distinct from surgeon.

00:07:29: Our views actually then converged and we came up with the guidelines that are actually fit for purpose for neurologists.

00:07:36: And I think from a neurology perspective, about things like medical school where you had to leave behind when we went into neurology... But also understanding the urological test that perhaps we never had exposure to, the urologists actually started appreciating much more about concerns of the bladder than how it's impacting neurological disease.

00:08:01: And so what we have at end was really a product I had best of disciplines.

00:08:09: Now, what was actually unique and I think which i'm proud to say is embedded from the start.

00:08:18: Is having the patient's voice?

00:08:20: And from our very first formal meetings we had an individual with neurological disease who was involved Actually setting this scene um...and also keeping sort of professional I won't say rivalries, but professional concerns at CHET really making it clear that its a patient's symptoms and their management.

00:08:42: That was hard to the project.

00:08:44: so though there could be different controversies in terms of assessment or management of bladder problems for urinary problems or sexual problems i think we were able to put differences aside and come together just because.

00:09:02: And what we see, therefore is very unique.

00:09:05: I would say that this actually now a model for other societies because they've appreciated the need to work together with other specialists and so...I think the EAN should be proud of the fact it has hosted a project that has set high bar on future guidelines in this field.

00:09:28: Professor Havoc Mario?

00:09:30: Now that's the newer jets guideline has been published.

00:09:35: What do you think are the most effective ways to disseminate them and ensure that practicing neurologists actually integrate them into daily clinical practice?

00:09:45: Well, I think this is a very important question because publishing guidelines is really only the first step.

00:09:52: The real challenge is making sure they're used in everyday clinical practice And i think all guidelines facing same problem.

00:10:02: So one key strategy is active dissemination through major neurological congresses.

00:10:07: For example, at the European level we have already integrated a neurojet guidelines into educational workshops and teaching courses during DEAN Congresses And these meetings reach large number of practicing neurologists and providing excellent opportunity not only to present the recommendation, but also to discuss real-life clinical cases.

00:10:29: And practical implementation of these guidelines is similarly.

00:10:34: we have already been promoting this topic internationally.

00:10:37: for instance We have organized a session neuro urology understanding and managing neurogenic bladder dysfunction at The American Academy of Neurology Meeting for three consecutive years already.

00:10:48: And this shows that there is a strong interest among neurologists, not only in Europe but internationally as well to learn more about the symptoms and how they can be managed.

00:10:59: However, I think that the dissemination should not be limited only to large international meetings.

00:11:05: It is equally important that guidelines are presented at National Neurological Congresses.

00:11:10: for example we have already included dedicated session on neurojet guidelines and creation national national neurological congresses And this year For example We also going to Tallinn Estonia for the Baltic National Congress also to promote neurologic guidelines and similar initiatives can be implemented in many other countries as well.

00:11:31: But again, we should also downsize this a little bit And This is often an overlooked but very powerful step Is local dissemination within neurological departments themselves.

00:11:45: short educational meetings, journal clubs teaching grounds where the guidelines are discussed can help neurologists become more confident and addressing neurogenital symptoms in their patients.

00:11:56: Because these symptoms are very common raising awareness we did that department can have a direct impact on patient care And this is especially important to introduce young neurologist and residents To be equating with the guidelines.

00:12:13: we implement them in their everyday clinical practice, because if you start learning young neurologists and residents from the beginning of your career on the importance of these symptoms that this can definitely have an influence later.

00:12:25: On implementation of these guidelines is in every day clinical practice

00:12:32: excellent.

00:12:33: And I may ask one last question so What do you see as the most important gaps in evidence or clinically cared that future research should address, in the field of neurogenic urinary and sexual dysfunction?

00:12:48: Well we had long meetings.

00:12:52: developing this guidelines and these meetings then literature review on all other guidelines.

00:12:58: three view reviews that we performed identified several important gaps.

00:13:04: That should be sure to dress in the future based on what you have found both in terms of evidence and clinical care.

00:13:12: so one of the biggest gaps is that many treatments that we use in neurogenic urinary and sexual dysfunction are based on evidence from either general population rather than neurological patients specifically, or these are derived from either urological populations of general populations.

00:13:31: So conditions such as multiple sclerosis or spinal cord injury on Parkinson's disease or stroke.

00:13:38: they have different mechanisms affecting bladder and sexual functions.

00:13:42: so we really need more disease specific clinical trials evaluating both pharmacological and non-pharmacological treatments that you use nowadays.

00:13:50: Another gap is sexual dysfunctions, which are still significantly under researched compared to urinary symptoms for example.

00:13:58: We know that sexual health has a major impact on quality of life, relationships and psychological well-being.

00:14:04: Yet it is overlooked in neurological care.

00:14:08: so we need better data on prevalence mechanisms especially effective management strategies for sexual dysfunction in neurological diseases.

00:14:17: And there's also better needs for screening tools and patient reported outcome measures which are specifically again designed for the neurological populations because many currently used questionnaires were not developed for patients with neurological disability and we know that patients,

00:14:34: e.g.,

00:14:34: with multiple sclerosis have additional symptoms that can influence both urological and sexual function.

00:14:40: so these are very hard to capture in question as it will be today.

00:14:45: And then, of course we need to develop models for interdisciplinary care.

00:14:50: We have already talked a lot about this so involving other specialists and allied professions in managing symptoms of urogentals problems that neurological patients are having.

00:15:05: Thank you very much for your insights.

00:15:08: On personal note it was a pleasure working with both Chalice and Mario on releasing this important tool for everyday neurological clinical practice.

00:15:20: As always, in scientific co-operations what you personally bring back home is way much more than the single perspective that each of us can contribute to these guidelines and most importantly I would like the European Academy of Neurology for their mindful attitude towards gaps in clinical practice and education that concerns our neurologists, especially subspecialties across European countries like autonomic nervous system disorders.

00:15:58: Despite this occurring, many common neurological conditions throughout the stages of life impact on quality and come along with a higher morbidity and mortality risk.

00:16:11: So I liked the concept you expressed.

00:16:15: it is important that we have concerted action thinking globally on strategies or public health strategy to improve and raise the quality of autonomic health care provision while acting locally on encouraging, practicing neurologists focusing on these important symptoms, autonomic symptoms that accompany common neurological disorders starting by asking whether this symptoms are present or not.

00:16:51: I think we had a very nice discussion today on an important autonomic topic, which are bladder and section neurogenic disturbances.

00:17:03: Thank you once again Professor Mario Habek from Zagreb and professor Jalisch Panika von London for joining this podcast today And wish you a pleasant day!

00:17:16: Thank

00:17:26: you for listening.

00:17:59: Thanks for listening!