Sammi: Good evening everybody and welcome to this evening’s Stress Urinary Incontinence and Aiding Patient Decision Making webinar. My name is Samantha and I am your host for this evening. Before we make a start, I just want to make a quick Acknowledgement of Country. We recognise the traditional custodians of the land and sea on which we live and work, and we pay our respects to Elders past and present.
Alrighty, so I would like to introduce our presenters for this evening. So we are joined by Dr Jennifer King. Jenny is an urogynaecologist and Director of the Pelvic Floor Unit at Westmead Hospital, Chair of the Urogynaecological Society of Australasia and President of the Continence Foundation New South Wales. And we are also jointed by Dr Carmen Huckel Schneider. So Carmen is a Senior Lecturer in Health Policy at the Menzies Centre of Health Policy. Her field of research is health systems, governance and policy development. Carmen is currently working with Health Consumers New South Wales and through this she listens to stories of hundreds of women with transvaginal mesh and she is also a women’s health representative for the New South Wales Transvaginal Mesh State Taskforce. And our facilitator for this evening is Dr Linda Mann. Linda is a Fellow of the RACGP and a member of the RACGP Antenatal and Postnatal Specific Interest Network. Linda has local and international medical experience, especially in genetics and women’s health. She is a GP representative on various national and local government committees and is an experienced medical educator. So, thank you for joining us and welcome Jenny, Carmen and Linda.
Alrighty, I will hand over to Linda now to take us through our learning outcomes for this evening and we will then hand over to Jenny King to commence the presentation.
Linda: By the end of this online activity, you should be able to discuss the public health issues regarding transvaginal mesh with patients in the context of the recent Senate enquiry, evaluate the range of management options available for stress urinary incontinence and the risk / benefit profile to support patient decision making and assist in patients in decision making in the management of stress urinary incontinence in reference to the International Patient Decision Aids Standards Collaboration Quality Criteria. I will just add a note that we are not going to be discussing urge incontinence.
Sammi: Alrighty, let us move on with the rest of the presentation.
Jenny: Okay. What I thought we would look at is, as a practitioner, what are we trying to do when someone comes to us with urinary incontinence? Now, obviously the first thing we all think this is, we do not want to miss anything else that might be going on that is causing this woman to present with incontinence. We certainly do not want to miss anything that someone else is going to pick up in six months’ time. So we do have to do a certain level of investigation. We want to improve her incontinence and we want to stop it getting worse. But we do not want to go overboard. We do not want to spend half the health budget on a condition that can be managed conservatively in most cases. So what we need to do, and this is the basic stuff we do with anyone. We look at the type of their incontinence. What makes it better? What makes it worse? When did it start? Because what you are trying to get to, is could there be some other pathology there? Is there something in that story that does not look like, sound like simple stress incontinence? We are looking at the things that make it worse, because they are things we can potentially do something about that means we can most of the time aim to manage that lady conservatively. It is important, Linda pointed out, we are not really talking about urge incontinence, but it is important to make the distinction between predominantly stress incontinence and urge incontinence, because there are different potential issues associated with them and different things that you have to be aware of and very different management. So, for example we know with stress incontinence we have got our conservative management. If necessary we have got surgical management. Rarely surgery has much to offer for patients with urge incontinence and that is when we have used medications.
So just quickly going over what you will have come across so many times. The lady with the overactive bladder symptoms. Now, this is not a diagnosis, it is just a symptom complex. It is the lady who says to you, when I have got to go, I have got to go. Everywhere she is going she plans it by the available toilets, and they know all the clean toilets in town. These are the ladies who say, I do not need to go to the toilet, I get to the front door and I put the key in and I am busting and they have to beat you out of the hallway to the loo. Now this tends to be a much worse type of incontinence than stress incontinence. It is unpredictable and it is variable volumes. It could be that if your bladder contracts inappropriately and you had 300 ml in there, you are going to be very wet. So it is a much more difficult type of leakage. Very common, it affects men, it affects children, and it particularly affects older ladies. And it is the third main reason that people are admitted to residential care when they get older. So clearly very important to deal with. But it is not the same as our ladies who come in and say, when I cough and sneeze, I will leak. I have gone back to netball since I have had my children, or I get on the trampoline with the kids and my bladder leaks. It is a very much more predictable type of leakage, and you can pick what triggers it. Again, it is very common, probably one in three women. Interestingly, a goodly number of nulliparous patients. You will get girls in their teens with sport for example, particularly if they are carrying a little bit of weight. And what I have found very interesting is that 50% of elite athletes who take part in high impact sports, will have stress incontinence. So we are basically badly designed. I always used to think that if you leaked playing sport, you would stop. But in fact if you are good enough, you keep going. And it is fascinating that they leak more in practice than they do in competition, and that is basically because of the adrenaline which will remind us we have got alpha receptors in the urethra. So alpha blockers, as we will come to later can cause urinary incontinence.
Okay, when we are going through their history you can be sensible. If that lady walks in the room and she is fit as a fiddle and just tells you she leaks with netball, she is not going to have any complex neurological problem. So you do not need to go too exhaustively into that history. Again, you are just looking for red flags. You are looking for medications like alpha blockers for hypertension that might be precipitating her leakage. You are looking for other things that do not fit with simple stress incontinence. Ladies who tell you that they had retention after their baby and they put me in the bath and they gave me some pethidine and they tried to make my bladder work. That sort of patient may well have something very different going on. People who were bed wetters and had urgency and frequency in childhood, again are likely to have an overactive bladder, not simple stress incontinence. Be careful of your ladies with any previous pelvic surgery, because they could have a much more complex bladder. So they are the things you are looking for when you go through the history. And you mostly will not find them. Again, examination. Do not miss other pathology. I would still get one or two ladies a year who have some pelvic mass that ideally should have been picked up earlier and I think sometimes, everyone finds it a bit embarrassing to talk about leaky bladders and I think sometimes as doctors we find it difficult as well. So, sometimes people do not volunteer information or the doctors themselves think, look I will just get you to someone who deals with this all the time. But I would ask that in fact you do do a few simple things with your examination. Make sure their tissues are not atrophic. If they are post-menopausal with atrophic tissues, they need some oestrogen. Make sure there is not significant prolapse, because that will cause another set of bladder problems. You do not need to do extensive neurological examination, but just do a simple internal, get them to squeeze their muscles so you have got some idea whether they know how to work their pelvic floor muscles.
Now, for patients with slightly complex symptoms, you may want to do more investigations and again, these really are minimal. You basically want to make sure you are not missing something nasty in the bladder, particularly a cancer. So patients who say, look I have had a one year history of pain when I wee, of frequency, urgency day and night, think there could be something else going on. Most importantly, you want to exclude retention and we will talk a bit more about this later, because that, if you think about it, if you have an overfull bladder which you cannot empty, that could present in a whole lot of ways. You could have frequency because you can barely fit in another 50 or 100 ml before you need to go again, or you could leak when you cough and sneeze simply because your bladder is overfull. So, patients with voiding dysfunction will not necessarily give you a typical story. If you can get them to do a bladder diary, so it is a little record of everything you wee and when you wee, you can tell a lot from that. Having said that, it is very tedious and patients are not keen on it. You certainly do not need to do urodynamics or cystoscopy in most patients presenting with simple incontinence. We keep them in reserve should they not respond.
Now, I just wanted to make a little point about urinary retention. I often get sent people who have had an ultrasound for some other reason, excluding pelvic pathology and the comment from the radiologist is they have a significant residual. They are not emptying their bladder properly. They need further investigation. Now, we all know if you sit in a waiting room with an overfull bladder for an hour because they are always running late, you do not empty your bladder very well immediately afterwards. So it is that over-distention that can temporarily impair bladder emptying. And if that lady has no other symptoms of voiding dysfunction, she does not need further investigation. If you really are worried, you may need to do an in-out catheter or get your nurse to do an in-out catheter if you really think residuals are the issue. But I would have to say, particularly in women, residual urine volumes tend to get over-called.
Okay. So we have worked out nothing much complicated seems to be going on. We are pretty sure it is just simple stress incontinence. So now we want to look at all of those things that could be making it worse and that we can change to improve the situation. And these are things that your continence nurses and physios will also work on with you. Oestrogen if they are hypo-estrogenic. Everyone needs oestrogen in their pelvic floor. Vaginal oestrogen is very safe. You will need to say 25 times, do not believe the package insert. Vaginal oestrogen will not give you breast cancer. Vaginal oestrogen will not give you strokes. But it does make a devil of a difference to your pelvic floor.
Now, weight is another difficult issue. There is no doubt if everyone could lose weight, everyone’s bladder would be better. But it is not easy. If it was, we would all be skinny. Sometimes it is the little motivator that someone needs to get their bladder a little bit better, so mention it but do not beat them over the head with it. Obviously your smokers with your chronic cough you can be as nasty to as you like, because anything that stops them smoking, whether it be motivation to fix their bladder, is worth it.
Medication we talked about. Particularly alpha blockers with stress incontinence, not much else. But some cardiac medications can affect urine output and retention. The lady who is endlessly lifting grandchildren, who is caring for an elderly partner, who is doing a lot of work, will, it will be difficult to get real improvement in her. And it is worthwhile saying, you should not be lifting like this. And equally constipation is another factor. Your bladder is always worse if you are constipated. So, you need to work on that one.
Women who are postpartum, I would discourage from doing anything more than pelvic floor exercises. They will almost certainly improve with time, and you do not want to do anything drastic in young women with young children who are quite possibly having other babies.
Okay. We have done what we can. We have decided to work conservatively with this lady and we are going to send her off to a continence nurse or a physiotherapist. I do not believe any of us have the time to do all of this therapy ourselves and I really encourage you to get two or three good nurses, continence nurses or physios that you can send your ladies to. They will encourage, they will be their bladder trainer. They really will make a difference. Now pelvic floor exercises give significant improvement, probably in up to 70% of patients. They have to be motivated. If they are not going to do it, they are not going to do it. But at least you can say things like, even if you do end up with an operation, even if that is what you want, you are going to be better if you have got good pelvic muscle contraction. And you have to warn them that this takes time. You cannot go to the gym and bulk up in anything under six months. Similarly, hypertrophy of your pelvic floor muscles will take up to six months and you need to keep doing it. Now there is lots of other little gadgets that your physiotherapist might have. Basically all of these things are just ways of getting your pelvic floor muscles to work better. And of course there is an App. And there is various little gadgets you can put into the vagina and tells you that you have squeezed better than the day before and it is all forms of biofeedback. Basically if they work for an individual, I think they are terrific. They all cost about $50 each so it is not too bad.
I think the message I would like to get across is, make sure there is nothing else going on, nothing else that rings alarm bells. The red flags that make you think that this is something else than simple stress incontinence. Patients with previous continence surgery, previous repair surgery could have a very complex bladder. Same with those with neurological disease. Send them off, they need urodynamic assessment because we need to know exactly what we are dealing with. And otherwise, you really only need to refer on those patients who have tried their best with conservative treatment, who really have put a lot of effort into it and are still majorly impacted, and quite honestly if someone leaks once or twice a year when they have a bad cold I do not think that warrants surgical management. We know what is causing it, you can put a pad on. Okay, maybe as the years go by it is going to get worse, but we will deal with it then. And I really think we need to encourage patients to work conservatively for as long as possible.
Now, having said that, I am a surgeon and I do believe surgery has a place for those ladies. But I think again, you need to be very careful about it. You will have heard a lot about the transvaginal mesh. Important to distinguish the mesh that we use for incontinence surgery and the mesh we use for prolapse. And I think there has probably been many more problems with the transvaginal mesh for prolapse than with the slings. Now we know we are up to about four million mid-urethral slings worldwide. Australia is at 120, 125 thousand slings since they were introduced. And we do have a lot of data on these. So I would have to say, I feel very comfortable when patients have failed conservative treatment, recommending surgery for them. This is supported by most of the medical organisations. It has not been supported obviously by the parliamentarians and you will have heard about that. But for me as a doctor, I find this fairly re-assuring and I think you can say this to your patients: Look, you have tried really hard. You are still really wet. There is something else we can look at if you want to think about it.
And the other thing to get very clear, there are complications with any sort of surgery and we will be talking later about better ways of getting this information across to patients. Now you can get bleeding, infection, chronic pain with any operation. Out old operations, we had a 5% incidence of pubic symphysis pain and osteitis pubis, but basically we did not have any treatment for those. We know that these newer mid-urethral slings have a much better safety profile than our older procedures and they are as good or better without the same difficulties, for example with voiding dysfunction.
So, now the other thing is, when you operate on a bladder, no matter what sort of operation you do, you can get problems. You can have problems emptying the bladder. You can make the bladder much more urgent, so instead of having leakage when you cough and sneeze, you have got leakage when you are busting to go. You can get recurrent urinary tract infections. And it was really interesting when I looked at the letters from the ladies at the senate enquiry, so many of those had had problems that were to do with their bladder function, and I think were a function of the surgery around the bladder, and I really think if we could have gotten to some of those ladies earlier we could have made a difference, because this is an excessive number of complications really from any sort of continence surgery. There is no doubt there are problems specific to slings, and basically it is the nature of the mesh and it eroding into the urethra or the bladder. Now, that universally runs at about 1%. If I look at the ladies in Australia who sent in their letters, it is about 8%. So they have certainly had a disproportionately poor outcome. We get superficial mesh exposure and that is when the lady might say, I can feel some scratching in the vagina or her partner says something is scratching me, and you can see there is a little bit of mesh coming through the vaginal wall. Now that is easy to trim off. It is the deeper erosions that are more complicated.
Now the other group where we have had problems is with a neurological pain postoperatively. And again, this happens with any sort of surgery. If you look at say, breast surgery, including for malignancy, we have got about a 20% rate of chronic pain afterwards. So it is not that it is unknown, but for the ladies who have had a sling procedure, what you have got to remember is that they had a non-life threatening condition and they now have a serious complication. So it is very hard to balance that. It may be that we will be better at predicting who may be at risk of pain following these sorts of operations and certainly it looks like those with fibromyalgia or chronic bladder pain, chronic pelvic pain are a high risk group. So I think we have to be super careful there. But basically, if you have got a lady who has really tried very hard, and quite honestly, that incontinence is driving her insane, I do not think it is unreasonable to refer her for consideration of surgery. But do not, she does not have to come with the first bit of leaking. We all need to try and say look, this is not a major drama. It is not going to cause problems. It is better that we manage conservatively as long as we can. Then if we need to look at surgery, fair enough. So that I think is the focus that we need to go with. Thank you.
Carmen: Thank you. So I guess I get to take over for the next few minutes at this point. I am going to give a bit of a background to how we have come to this point and what I am going to be talking about over the next 15 minutes or so has been informed by taking a systems perspective about how we have got to where we are now in the discussion around treatment for women with stress urinary incontinence, as well as reflecting on the conversations that I have been able to have in my work with women who have reflected on their own experience and treatment for stress urinary incontinence, frequently with women who have had surgery and later come to regret it and wish they had had a different pathway of care.
So how did we get to this point now? So, on the slide here you see just a few of the things that are happening around at the system level that have meant that we have an increased focus on conservative management for stress urinary incontinence and how to encourage that in the system. You probably are all very aware that there has been a series of parliamentary enquiries. There has been one in Australia, one in Scotland and there is currently something called a Safety Review going on in the UK at the moment. It has been a very interesting experience observing these parliamentary enquiries. They were initiated by consumers and consumer concern and consumers going to their parliamentarians asking for these enquiries.
Linda: Can you just remind us what POP and SUI stand for?
Carmen: Yes, certainly. So, these parliamentary enquiries have looked into the types of surgery that use mesh for pelvic organ prolapse, POP, as well as SUI stress urinary incontinence. And as Jenny said before, although the material is the same, the mesh devices used to treat pelvic organ prolapse and stress urinary incontinence have a different anatomical function. They are also placed differently. It is a different type of surgery and generally, the devices used for stress urinary incontinence which is also known as a mid-urethral sling or sometimes goes as a tape and sometimes goes as various different brand type names, such as TVT or TVTO, are a smaller piece of mesh device which is placed to support the urethra as opposed to POP mesh which is placed to support organs that are prolapsing, hence pelvic organ prolapse. So these parliamentary enquiries have taken place and they have been looking at both of those different types of devices, and you may be aware that one of the conclusions from the Australian enquiry which had a final report passed down in 2018, was that transvaginal implantation should only be undertaken with fully informed consent and as a last resort when other treatment options have been exhausted. So this is very much what we are talking about today.
What we have also been seeing happening is that there has been action by consumers for consumers, and amongst consumers. There are a range of consumer forums. There is an organisation, the logo of which I have got up there on the slide, Mesh Inured Australia which is an organisation which has been formed by women who have mesh implants who are advocating for better controls and oversight and transparency at the TGA in terms of the regulation of devices and also as part of that senate enquiry, the Heath Issue Centre and the other state consumer peak bodies opened up a survey asking women about their experiences and they were surprised that over two thousand women in Australia responded to that with stories of their experience with transvaginal mesh. Overwhelmingly those stories are partly focussed on the adverse outcomes that they have had after their particular surgery, but also overwhelmingly it is about the process of care, what they went through in the lead up to having surgery and what happened after they had surgery. They are very much focussed on, I wish I had known more, I wish my GP had talked to me more, I wish I had understood more about my different options, and I wish that I had had a relationship with someone so I could talk more openly about my stress urinary incontinence and I think that I probably would have taken a different path if I had been able to do that.
There have been some outcomes from those reviews. There has been a suspension of the use of mesh for pelvic organ prolapse in Australia. It is now only being used under certain special permission conditions and also a type of the mid-urethral sling called a mini-sling which is basically a shorter version of the mid-urethral sling that has an anchorage, so there is a different mechanism through which the device is fixed in place. They are currently under special access arrangements only. This is all happening in a contextual backdrop where there is continual scrutiny and criticism of device regulation more broadly. The Therapeutic Goods Administration rules that are in place for regulation of devices are quite different than the way that evidence is assessed and devices are regulated or there is regulation of pharmaceuticals and there is quite a political move to make those standards more similar to the standards that we have for pharmaceuticals. So that is all part of the backdrop of that.
There are a range of evidence gaps which are being discussed amongst administrators but also epidemiologists and in systematic reviews. We know that there are some gaps in terms of longer term evidence but particularly we still have gaps in terms of being able to recognise which patients are more well suited for surgery than others, and which patients might be more likely to have complications than others. We have a systematic review that was released in 2017, directly prior to several other larger studies actually coming out, and so we are eagerly awaiting a review of guidelines from NICE in the UK which is expected early next year which will be able to bring together the latest evidence on that again.
You may have heard that in the United Kingdom that currently there is a suspension on the use of the mid-urethral slings. It is not suspended in Australia, but there is currently that suspension that is pending the safety review that is happening there at the moment. You are probably also aware that there are different class actions that are happening. Consumers are currently in legal action against manufacturers of various devices. That is kind of running parallel and it all forms part of this broader noise that we have got around the use of devices for stress urinary incontinence and POP at the moment. And we have also then had various different policy responses to the senate enquiry. There is a transvaginal mesh clinic which is currently being piloted in New South Wales at the RPAH and there is some action in other states as well as there is an increasing demand or expected demand amongst patients to have corrective surgery following the insertion of mid-urethral slings.
So these are all things that your patients may or may not be aware of, but it means that there are certain things to be looking out for. There are a couple of quite prominent voices that have been discussing in the various parliamentary enquiries and the various different safety reviews, about why we got to the situation where we have got to now, where there is so much noise, where there is so much policy action at the moment. A Professor for Evidence Based Medicine at the University of Oxford has been an advocate for the current suspension of the use of mesh surgery in the UK. He discusses there this combination of the fact that we have got doubts over the way that medical devices were broadly being regulated, as well as certain gaps in the evidence about who or who is not suitable for surgery that is leading to this surgery. And we also have a urogynaecologist from Scotland who has been quite prominent, and he often talks about how when we are thinking about potential risks of surgery, the fact that mid-urethral slings are a permanent device really sticks out to him as a reason why he thinks so many women are now very, very concerned about having the devices inserted.
But as I said, from the conversations that I have had with women, the real focus amongst them is more about their journey and their care and their relationships with clinicians along the way and how they wish they had had a better partnership, more in depth conversation, more knowledge and more open discussion about their choices and if they had ended up with, after a good relationship with the clinician still making the choice to have surgery, that they would have accepted the risk of complications if they had really known that they were making the choices with their full discussion, knowledge that they wish that they had.
So like I said, there has been some policy actions that have happened more recently. There is a series of patient information sheets that have been produced by the Australian Commission of Safety and Quality in Health Care. Also, a clinical pathway for stress urinary incontinence and incontinence that I will be putting up on the slide in just a minute and some credential guidance has been distributed to local health districts in New South Wales, and New South Wales Health as well as various other health departments in other states are engaging with women who had had injuries and have been unsatisfied with their treatment in developing new policy actions as well.
So, I am going to throughout the remaining 10 minutes, put up just a few bubbles of quotes that have come from women that I have been speaking to as part of the work that I have been doing, just to give you a bit of an indication of what they thinking when they are reflecting on that early part of their journey where they might have had the option to extend or try conservative treatment a little bit longer. This women said to me in that 10 minute visit, and by that she means with the GP, in which they note your symptoms and scribble off a referral, the very real life of a woman, mother, wife is possibly about to be altered for ever by the course of treatment that they recommend. And women have often said to me that they felt that by the time that they had reached the point of referral or speaking to an urogynaecologist, that they had basically had a decision made for them, that they were being down the pathway towards surgery and we want to make sure that they do not feel pressure or that decisions have been made for them, but decisions are being made with them.
So what all of this background and system changes means for GPs is that there is going to be a greater focus on management of stress urinary incontinence in the primary care setting prior to referral and prior to surgical management. So, do watch out for the emergence of shared decision making guidelines which will be coming out probably over the next 12 months or so, updated guidelines from NICE in the UK - it has been delayed but it is expected in 2019 – better guidance for patient selection as we gather and compile the evidence on who is more suitable for what kind of surgery and an increased focus on management of stress urinary incontinence as a chronic condition in the primary care setting, extending that period of conservative management.
So this consumer wrote: They are the ones who write the referral to the gynaecologist. These referrals are often written without much thought, or what they do not realise is that by the time a patient gets to a specialist, the patient already feels that they have had two doctors confirm their need for surgery. So this is the sentiment from one consumer. It is not a representation of everyone’s experience, but this particular woman definitely felt like they wanted more from the GP, more time before they got to the referral stage.
So on the screen now is the urinary incontinence care pathway that has been developed by the Australian Commission for Safety and Quality in Health Care. We have the link down at the bottom of that slide as well. So I am sure you will all be able to, it is a fairly clear pathway that you will all be quite familiar with, and what I would really like to emphasise is that women want to have time to go through this pathway and through this journey. When they look back, many women have said to you me, you know it really was not that bad. I really did not give enough time to trying the different options. I wish I knew what the different options were. I did not have time to discuss or go through the different options that were available to me. And the one quote that this there on the right side, is actually from the senate enquiry report, that says: They were struck by – so the parliamentarians that led the enquiry were struck by either personal accounts of women who wrote to the enquiry generally did not reflect a process of thorough counselling and informed consent, and this is what really needs to start already in the primary care phase. It does not just happen when you are already along the pathway towards surgery. Counselling and informed consent starts very early in the process.
So in this pathway, we have various different elements, some of which are really quite clear and that in your own practice you may be doing already or feel very comfortable doing. So, the bits about when does, working out when the patient actually leaks, how long has it been occurring, the quantity of the leakage, the general health assessment, the urinary symptom assessment and distinguishing between the different types of incontinence. There is also the very technical parts of the guideline, many of those which Jenny already went through with you, working out when it is a situation of so-called complicated incontinence, recurrent, debilitating, severe incontinence. Making sure that you are not missing those other pathologies that we need to be taking notice of. And also, various parts of the first line management are also quite technical and you can work through those.
And then we have certain parts of the care pathway which really are those challenging parts. And it is those challenging parts that women that I speak to say that they wish had been done better in their instance. That is answering questions such as how bothersome is the incontinence for that particular patient? Am I really working through different lifestyle interventions, and actually reviewing that management. So how bothersome, what is their quality of life, what is their actual desire for treatment? Working through those lifestyle interventions and reviewing that management. And those are the four aspects that we would really like to emphasise in this session that we need to spend more time focussing on.
So, we can go back to our dimensions of patient centred care in order to bring about and remember what it means to spend time with patients, focussing on those difficult parts of that care pathway. Working out how bothersome is it? What is the desire for treatment? Working with that patient and developing that relationship. So, creating a fabric of trust, beginning with listening, promoting that clear empathetic communication tailoring it to patients needs and their abilities and getting to know the patient. Because if we are going to be focussing on more conservative management in primary care, it does mean developing a relationship with that patient as they may be working through a period of several years of trying conservative treatment, adjusting their lifestyle, working out to what extent do we need to adjust your lifestyle, what can you live with, what can you change about your life, what can you fix with conservative management and what different steps will you try before you move on to referral and potentially surgery?
So, things such as how bothersome is the incontinence for the patient and assessing the quality of life and desire for treatment. Some simple rules that we can draw out from the patient-centred guidelines, listen to patients, question your own assumptions about what you think might be bothersome or might not be bothersome for that patient. Reassuring the patient that stress urinary incontinence is quite common, especially after childbirth so they do not feel that it is unusual or that they are alone. You can reassure patients that the majority of women who do have stress urinary incontinence do manage their condition without surgery. There are far more women with stress urinary incontinence than women who have had surgery. Patients might not want active treatment now, but a lot of patients say that they feel like they have to continue to talk about it because they do not want to be forgotten. So if you are reassuring the patient that we do not have to do anything now, you can come back later – a month’s time, six months’ time, in a year’s time – we can do something about it then. So the patient might be pressured to make quick decisions if they are already ending up in front of a specialist. It might be due to the cost of appointments. It might be due to feeling that they are further along the pathway to surgery and they have already been told that that is the direction which they are going in. So reassuring patients that they can try something at a later time, they can come back and try something at a later time.
I have just got an excerpt from the current NICE guidelines there. So, if a woman chooses not to have further treatment for incontinence, you can offer her advice about managing those symptoms and explain that if she changes her mind at a later date, she can book a review appointment to discuss past tests, interventions and reconsider the treatment options at a later time.
There are also different resources out there about offering advice about managing urinary symptoms. So, there are various different strategies obviously for trying to alleviate the symptoms of stress urinary incontinence and that includes getting the chronic cough under control. That includes good bladder health, good bowel health, getting straining and any issues about toileting under control. But there is also a lot of strategies about planning everyday life and adjusting everyday life, and I have listened to a lot of women who said, no it was mild enough I wish now that I had accepted that I had moved into a new phase of life and that I just needed to adjust the way that I live, so that I can live with my stress urinary incontinence. We have on the screen here a few of the self-management resources that are out there. There is a really good resource from the Australian Federal Department of Health on What Now? Helping clients live positively with urinary incontinence. I suggest that everyone read that. But there are various different resources available from the Continence Foundation of Australia as well as some good resources about healthy bladder and bowel habits. And engaging in this conversation with women, is all about relaxing, the experience of being able to talk about having stress urinary incontinence, emphasising that it is common, that there are a lot of different things that we can do. Their life certainly is not over and we do not have to do anything drastic about it now and that you are with that patient for the long haul and for the long journey as they decide to discuss their different choices.
In terms of a review of management, once again it is about listening to the patient’s journey with respect to attempting each of the different management strategies. They might be doing several concurrently or they might decide one thing after the other. Long term encouragement to keep pursuing lifestyle change and a lot of the lifestyle changes that can help with stress urinary incontinence are also those that help with other aspects of healthy living as well, particularly related to smoking, good bowel habits, good bladder habits and losing weight if the patient is overweight. Ensuring that it is a safe, non-judgemental discussion and explaining the importance to have made good full, genuine attempts at management before proceeding to surgery.
Just pulling up here some of the dimensions from the International Patient Decision Aids Standard Collaboration. So, there has been a lot of talk about consent processes having been inadequate in the lead up to surgery for incontinence as well as pelvic organ prolapse. So, keeping these different dimensions of good patient joint decision making in mind, will help us ensure that women move through their journey having the sense and the feeling that they have had a good relationship and have been in control of their own particular choices. So that means with any of the different choices that we are discussing with patients, we need to describe the health condition or the problem for which the patient decision is required, so we need to understand what they have got and what they are making a decision about. We need to clearly explain to patients what each of their choices are at their particular point in their journey. Describing those different options that are available for the decision, including non-treatment as an option where it is appropriate, different positive features for each option and that includes risks and benefits of each option. The negative features and the relative risks of each option. And thinking about discussing with the patient what is important for them. What are their different values? What are the outcomes that they are looking for? What is important for them? How do they understand potential risks and potential benefits and encourage them to discuss what is going through their mind. What are the different options that they are weighing up? Why are they choosing one option over another? What is too difficult for them? What is easy for them? What would they like to keep on trying?
There is one patient decision resource that is available for patients that are potentially leading up to the journey of referral and potential surgery for stress urinary incontinence. I like this one in particular because it includes a particular table on the page that you can see on the screen here that asks patients to articulate their choice. Why did they choose the option that they are choosing and can they justify, give reasons for the options that they are choosing? I am not saying that this is necessarily the best patient decision aid to be using, but I quite like to emphasise that part of the procedure of informed consent is going through the journey knowing their different options and being able to articulate why a patient chooses the option that they want. And we want that right from the point of being early on in their journey.
So, GPs have a key role in optimising that conservative management for women with stress urinary incontinence, and understanding those patient values and ensuring that their journey in treatment starts with a discussion very early on about all of the different options and being able to reason why they choose their different options.
Linda: We have got some questions that you might like to make some comments about, both Carmen and Jenny. People have asked about access to publicly funded Allied Health bladder folk, both urinary continence nurses, pelvic physiotherapists and the like, and there is an impassioned comment from someone in South Western Sydney. Do you have ideas about how people can access these things?
Jenny: Most of your public hospitals will have continence physiotherapy services. We do have a shortage of continence nurses because they are so under resourced they spend their time with catheters in the community, but all of the public hospitals have a physiotherapy service. The problem is your wait list is easily six months. There are private physiotherapists. If you go onto the Australian physiotherapy website, they will list their women’s health physiotherapists. Now, that could be a cost factor particularly in South West Sydney and I do not know how - you have a system don’t you that patients can get physiotherapy. I am not sure if that applies to people who are not elderly.
Linda: The requirement is that the person has a chronic condition which has been present for longer than six months and that there are two Allied Health people plus the GP involved in their care.
Jenny: So that could work for quite a few, couldn’t it?
Jenny: Yes, so definitely if you can get your patients to private physios, they will get perfectly good service. It is just the cost if they need ongoing treatment. But try your public hospital first. We want people to put pressure on New South Wales Health, that we need a lot more resources in the community and in the hospitals for conservative management, so do not worry about complaining, you are actually doing me a service.
Carmen: And also for women that are still experiencing a certain level of incontinence after the birth of children, tapping back into the hospital where they may have birthed their child, they may be able to still see a postnatal incontinence nurse or a postnatal physiotherapist related to the care they had in their hospital. So that is also one avenue to look out for, for your patients.
Linda: Carmen in the planned resources, are women who for whom English is not their first language going to be accommodated?
Carmen: To be honest, I find the resources out of the UK and the NHS to be better in that than the resources out of Australia. The plan is to make resources available in multiple languages, but the care pathway resource for GPs is still currently only available in English and the commission is still in the process of providing any other languages as well, so we are still reliant on our other translation services. But that is a clear message that we want to send back to both the Commission for Safety and Quality in Health Care and the various different state authorities.
Linda: And how do you think GPs, apart from people who attend this webinar, will get access to these guidelines? New South Wales Health for example, is not the best at connecting to general practice. Are there other resources that you think would be a repository for this information? I do not know, like Health Pathways perhaps?
Carmen: Yes, so Health Pathways is available in some of the primary health networks these days and linking these resources into Health Pathways is something that the taskforce is going to be looking at. So each of the Health Pathways where they are available in the primary health networks will be linked into those resources. The guidelines and information sheets that are available for consumers can be accessed direct from the Australian Commission for Safety and Quality website and New South Wales – I know that in New South Wales, because that is where I am located – there will be additional resources for GPs made available in approximately, within the next six months, but integrating it into more sophisticated care pathway into Health Pathways is something that I will be encouraging all of the primary health networks to do now that we have that care pathway that I went through in this webinar.
Linda: And of course it would be wonderful if the manufacturers of software would include these things in the patients’ information contained in the software, but that would mean that they would have to spend some money, so I guess that is probably not going to happen.
Jenny: There is one other possible avenue for translated pamphlets. The International Urogynaecologist Society Association has most of their patient information leaflets on line, freely downloadable and many of those have been translated. So it is IUGA.
Carmen: So one of my favourites is actually one produced by the NHS. When we are talking about the tape procedures, it was actually released in the middle of last year, has a really, really good breakdown of issues for consumers and different options for conservative options for conservative management as well as the different options in terms of surgery. And I do think that we have still got a little bit of catching up to do in terms of the official resources that we will make available in Australia with this going to all be happening over the next 12 months.
Sammi: Great. So that does bring us to the end. So if we jump on the next slide, you will be able to see the learning outcomes again. So this is just a review of what we went over at the beginning. Linda did you have anything else that you wanted to add in terms of the learning outcomes or what we have covered tonight?
Linda: I think the thing for us to remember is the fact that we were talking about stress incontinence and not talking about the other sort. Patients often like an easy medical fix and I think one of the things we have learnt tonight, is in fact we GPs have a job to do in supporting patients over a long period of time to change their expectations because if they jump for the quick fix which might be a surgical one, they might end up rueing the day.
Sammi: Fantastic. So that does bring us to the end of this evening’s session and I would just like to say a big thank you to our presenters, Jenny and Carmen and to our facilitator, Linda. Thank you for joining us tonight, and also thank you for everyone that joined us online as well.