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Diane Newman: Welcome. My name is Diane Newman, and I'm the medical director of UroToday. And I'm really excited with my presenter here today, Dr. Philip van Kerrebroeck. He is a urologist in the Netherlands and vice chair of the EAU Policy Office. And what he's going to present today is the European continence health strategy. Welcome.

Philip Van Kerrebroeck: So well, this is just for the non-EU viewers, it's important to realize the countries of the European Union because that reflects also the strategy that we are following. As I said before, the European Union, of course, is a union as an organization, but it's composed of different entities.

You have the member states, but there are significant differences between still Western Europe, Central Europe, Eastern Europe in terms of culture, in terms of health organization, for example, reimbursement of continence materials, reimbursement of medication, health care access, the presence of continence nurses, the availability of physiotherapy during pregnancy or after pregnancy, and so on.

So all these aspects that are important in the framework of health strategy. And we have to deal with these differences. So that means that when we come later to the aims of the project, we have a kind of an à la carte menu where, in the future, member states can choose what they see as a priority or as priorities for their individual country because there can be differences. In countries where there is full reimbursement of protective materials, this is not an issue.

But in several countries of Central and Eastern Europe, for example, there is no reimbursement at all. So that could be, in terms of quality of care, an important item that proper reimbursement is organized in these countries, just to give one example. The middle picture is obviously illustrating a male and a female because, of course, we're dealing with both problems.

And it's quite interesting to tell that one of the driving forces initially in this project was the organization of prostate cancer patients because they, immediately when they heard that we were busy with the project around continence, said, wow, this is very interesting because our patients are so much complaining of this because they have been cured for prostate cancer, but now they have a small bladder or they have, for other reasons, urinary incontinence, and they encounter a lot of problems in terms of access of facilities for continence treatment or they cannot find a toilet in public spaces, so they do not dare to leave their home.

So this is a great project, and it's very important. And I told you about the four initial stakeholders for this program. As I will come back in a few moments, there are several other stakeholders that joined us, amongst them patient organizations of patients with different kinds of cancer and also very important patient organizations that deal with patients with neurological problems, for example, the Alzheimer Foundation.

The picture to the right shows the vice chairman of the policy office in front of Manneken Pis, which is one of the logos of Brussels. In February, we had a meeting around him to launch the second part of the Urge to Act Campaign in the presence of members of the European Parliament to indeed grasp the attention of not only the political environment, but also the broader environment, the press, and the lay public.

Well, this is showing my disclosures because I told you that I'm the vice chair of the policy office of the European Association of Urology, but I'm also a board member of the ICS, and I'm a consultant for several companies. But I'm quite open. I have these declarations public because, of course, dealing with European authorities, it is very important to keep a kind of independent state and be quite open about the contacts with these companies or startups.

So this slide kind of summarizes what we could grasp from the literature, indicating that about 55 to 60 million Europeans indeed have problems with continence health, but that there is, as I said before, only limited literature available that gives a good idea about the economic burden of urinary incontinence in the European Union. But what we can take out of the available literature is that there is indeed a significant economic burden because urinary incontinence will lead to a decrease in independence, in everyday activities and productivity for individuals, but also for the carers.

We have to realize that continence health is not only a problem of the people that suffer from continence health problems, but also the people around, because later we will discuss that there is quite a bit of incidental carers that are family members, friends that are not professionals in the field but still have to take care and have an impact on continence health of individuals. And that also has to be taken into account in terms of the economic burden.

And then, of course, the big motto or aim of the Urge to Act Campaign, that we are convinced that there is a great potential to reduce the economic burden through prevention and management. Our aim would be to have early continence assessment by qualified health professionals in a patient-centered and cost-effective care pathway. These are two important elements. Indeed, our drive should not be paternalistic—we know what is good for you—but indeed what patients need from us. And also it should be cost-effective because, again, for policymakers, this will be a very important item. And also, I think it is our common responsibility in an increasing cost environment to be cost-effective also in continence health.

So these are the four initial stakeholders, European Association of Urology, the International Continence Society, the World Federation of Incontinence and Pelvic Problems, and the [SPANISH], the [SPANISH], and [SPANISH], which is the group of Spanish-speaking urologists and urogynecologists. And to the right side, you see the logo of the Urge to Act Campaign.

So this is dealing with the health, socioeconomic, and environmental cost of incontinence prepared for the European Association, obviously. And there you see the people from Triangle of Health. This was the company delivering this report and the initial stakeholders, but also input, as I said before, from several experts and the national urological societies.

And you see then summarized here, because indeed some countries have no epidemiological nor socioeconomic data at all, and hence they could not deliver anything. Others would not like to participate or react. That's all in the game. But definitely, we had a nice group of people, and beside the information of the national societies, of course, we contacted health insurances in the different countries, ministries, to gather information on the epidemiological and socioeconomic data.

So this came up as this program, the health, socioeconomic, and environmental cost of continence problems in the European Union. And as you indicated, down you can see the website and the address where you can access this report. And on the right side of the slide, you see on top the four initial stakeholders.

But then you see 17 other stakeholders that have been instrumental in putting up this report because they gave us input. And as you can see, the patient organizations, the International Urogynecologic Association, there are nurses, there are physiotherapists, and the patient organizations as well, from the oncological field as from the neurological field.

How did we approach that? Well, a mathematical model was used in a bottom-up approach with societal perspective, meaning that we look not only at direct health care costs but also evaluated and calculated the indirect costs and the cost of waste disposal. Now direct health care costs, we all feel quite comfortable with that. It’s incontinence pads, GP consultation, specialist consultations, physiotherapy consultations, diagnostics, pharmacological treatment, surgery, and associated hospitalization and nursing home admissions. That's quite obvious.

However, we also have to account for the indirect cost, which is productivity losses, which is an important element. And this is presenteeism, that means that people that are still going to work, but specific adaptations have to be implemented in order to allow people with continence health problems to continue their work in their environment.

For example, somebody working in a banking situation at the office of a bank, when that individual has overactive bladder and has to go suddenly to the toilet, this will necessitate specific facilities or even can mean that they have to look for a different position for that individual. And all this can go with cost.

Absenteeism, obviously, is people that cannot go to work because of their problem. And then, as I said before, caregiver costs are very important also, because we noticed that in continence health, there is a lot of incidental care given by family members, friends, neighbors, volunteers, and so on.

And then third, but definitely not the least important in the actual environment, is the waste disposal cost. There is, of course, the actual incineration of waste material, not unimportantly all the protective material that is thrown away that contains urine or eventually fecal material. And the question is, is it possible to recycle some of this material in order to reduce CO2 emissions?

Important to realize is also that in the report we pay attention to fecal incontinence, but data are even more lacking in that respect. So the main information will be focused on urinary incontinence.

In terms of prevalence, the definition—and we were forced there a little bit by the available literature—is any form of urinary incontinence. And obviously, we could find large variations between countries. Perhaps this is not always reflecting the real situation, but it's more linked to how incontinence problems are recorded in an individual country, to which extent there are good databases that give an indication, and so on. Sources are indeed published literature, the seventh ICI book, information delivered by the national societies, and country health databases.

So this is a quite interesting slide because it's giving an indication of the prevalence of urinary continence problems in different countries. And globally, we can say within the European Union, 22% is the prevalence in females and 10.5% prevalence in males. As you can see, there are quite significant differences in individual countries, but this, as I said before, is linked to the registration systems.

So therefore, the average prevalence is quite a reliable figure, giving a realistic appreciation of the real figures. And this is matched also with epidemiological data from countries as, for example, Poland, where good prospective epidemiological research has been performed that is confirming or indicating these data.

The economic burden, as you can see here, for the 27 EU member states, amounts to 69 billion euros. I quoted this figure already before—55.7 billion for females and 30.5 billion for males, which means an average cost per patient per year of nearly 1,500 euros. And if I calculate well, this would be about $1,700 US at the actual rate. So quite impressive figures.

Again, you can see significant differences from one country to another, as I said before. Obviously, this is related to the specific reimbursement or cost calculation system in individual countries. For example, in Germany, where there is full reimbursement of protective material, medication, and so on, costs are much higher than in other countries where there is no reimbursement for protective material, no reimbursement for medication in the field of continence health, and so on.

This slide gives an overview of where these costs are situated. And for simplicity, this has been split into males and females, but of course, both direct and indirect costs are present in males and in females.

So you can see that about 9% of cost is in medication, which is 7% in females. Incontinence pads are 28% of the total cost in males and 22% in females. Physiotherapy is 7% in males, 12% in females. And absenteeism is 13% in females, 60% in males. Presenteeism is 15% in females, 19% in males. And the global caregiver cost is 15% in females and 5% in males.

I cannot directly explain these differences, but this is the finding of the research that we performed. But as you can see, some conclusions from this: incontinence pads are a major factor of cost in the global cost of continence health, as are caregiver cost, presenteeism, and absenteeism obviously.

Then we come to the point that I made earlier that without any further action, the economic burden of urinary incontinence will increase by more than 25% between 2023 and 2030. So going from 69.2 billion to 86.7 billion excluding caregiver cost. But if we take into account the global cost, so the caregiver costs included, we are approaching a situation in 2023 of about 80 billion euros, raising by 2030 to more than 100 billion in 2030 without change in policy.

So we were dealing with the point of environmental aspects, and indeed we've seen that protective materials are not only the most important cost in terms of health care costs, but also we have to take into account that the incineration of protective materials is significant. And here you can see that the carbon footprint in tons of CO2 of the protective materials within the European Union elevates to 157,230 tons of CO2, which is significant.

There is, of course, in the framework of environmental concerns, a major reason to see if alternatives are possible. One of the alternatives would be recycling of the material, but recycling does not go without cost, and indeed we could calculate that incremental cost of 100% recycling of incontinence pads would be an extra cost of 75 million. So you have to balance that with the environmental impact and the indirect costs that may cause.

So these are, again, now political challenges for the future. But it's important to realize this, and again, in the framework of the Green Deal that has been proposed by the previous European Commission and has been confirmed by the actual European Commission, this will be an important aspect of the future policy. So this definitely will be a focus of attention in the implementation of the Urge to Act Campaign.

So all this is nice. This is the data. And as I said before, when you talk to politicians, you need the data. But the next step, of course, is action. And in that respect, we made a manifesto, which is called the Manifesto for Policy Reform Transforming EU Continence Health. And again, we produced this manifesto in consultation with the initial stakeholders and the additional stakeholders that joined us for the Urge to Act Campaign.

We could formulate 10 recommendations. And as a background, these recommendations are not in an order of importance nor in an order of priority. It's just a summing up of 10 recommendations that came out of the consultation with the different stakeholders, including the contact with patient organizations and medical organizations. And as I said before, a kind of à la carte menu where as well the European authorities as the member states can choose from in order to start implementing a new continence health strategy in the framework of the Urge to Act Campaign.

The first point of recommendations is to develop a comprehensive EU continence health strategy. Now you can say, well, you just explained what are the problems, so the strategy should be obvious. Well, if you look at the different health authorities in the member states or in the national organizations, there is no continence health strategy. It's left over to the field, let's say, the medical field, the physiotherapy, the nurses.

And, of course, there are some decisions taken by policymakers in terms of reimbursement for physiotherapy, facilities for continence health centers, and so on. But there is no framework. There is no strategy. Believe it or not, it is remarkable, but none of the European Union countries has a clear continence health strategy. So that, of course, will be, in my view, a very important item of the action plan.

Second point—give individuals full and equitable access to continence health solutions. Again, this may seem obvious for some health care organizations, but we have to realize that even in the European Union, there are several countries where this is not available yet. There is no full or equitable or adequate access to continence health solutions because of all kinds of limitations, waiting lists, no reimbursement for benign conditions, and so on. So that is absolutely also an important element.

The third point—guarantee access to toileting facilities in public and private spaces. This is perhaps a bit more looking at the trivial aspect. Why thinking of toilets in the public and in the private space? Well, a patient that had a radical prostatectomy, or a female that has overactive bladder and has to rush to the toilet within a couple of minutes before wetting him- or herself, needs to find a toilet that is easily accessible, that delivers enough privacy, and all the conditions that go with it. Well, go out.

And in many countries, in many cities, in many places, you will not find it. There are excellent examples where individual initiatives made this available, but on a global scale within the European field, this is still largely lacking. So we think that this is a very important aspect also.

Number four—improve the number and accessibility of trained health providers. In the framework of what I said before, for some countries have good access to physiotherapy, for example, but in several countries this is absolutely non-existent. Same for continence nurses and other paramedical healthcare providers in the field of continence. But even the access to the strict medical care, specialist care, is limited because of waiting lists, cost, and so on.

Number five—find and fund sustainable continence care solutions for health systems. This is again in the framework of the Green Deal, the environmental aspect of continence care, but also the global appreciation of the intrinsic quality of continence care in different countries of the European Union.

Support informal caregivers. I've been indicating several times that around every individual with continence health problems, there is a network of people helping at different levels and different aspects, and they are, in general, very poorly supported. It's volunteering work, it's not paid for, it's not compensated for, it's not facilitated. So we think that this is a very important aspect of the recommendations because they are very important in terms of the final quality of care that individuals with continence health problems will receive.

Number seven—understand the interconnection of continence and related health domains. This is also an aspect that is very dear to me because we noticed that since COVID, continence health problems have increased by 10%. We speculate that this is due to the increase of anxiety and depressive symptoms because of isolation and the aspects that go with that.

And so mental health is a very important issue. It has been aggravated by COVID, but it was already there. We are all convinced that mental health issues can impact on continence health, and the other way around, continence health problems can impact on mental health.

And for example, one of the big advocates of our campaign is the Alzheimer Foundation, because they can see that in terms of quality of life for Alzheimer patients, continence problems are one of the major issues for these patients. So that's also a very important recommendation.

Number eight—improve funding for continence health research. Any individual in the field of continence health does not have to be convinced that, indeed, research is a very important topic. I recently had a talk with a member of the European Parliament, that formerly has been a Minister of Health in his country, and he said, why do you need research for? All this is proven.

I said, well, sir, I'm terribly sorry, but in what we do in terms of continence health, only 40% is evidence-based, and 60% of what we do is purely empirical or based on experience or expert opinion. So there still is absolutely a need for additional research into the field of continence health.

Number nine—grow public awareness campaigns. As we started to talk, it's clear that continence health—or incontinence, perhaps I should say—still is a subject of taboo. There is still wrong thinking, in a sense that it is just a luxury problem, a lifestyle problem. It's not a real medical problem. And so public awareness campaigns are important, also to inform individuals that this is a serious problem that has to be taken care of and that there are possibilities to take care of this problem.

And last but not least, encourage public-private partnership to improve continence health. Again, this is a broad topic, but one example is if you look at the cost of continence pads and the environmental impact that this has, clearly a change should be there.

Now, it's obvious that this is a perfect goal for public-private partnership, where the companies involved in producing these incontinence pads could think with us on new modalities, new technology, in order to improve the quality of this continence material, thinking of possibilities of recuperating the materials, and so on. And this is a perfect field for public-private partnership.

So how far are we? Well, we had a meeting last year in the European Parliament with different members of the European Parliament. Of course, we had the 9th of June of this year. We had the European elections. So we have to deal with the new European Parliament, a new Commission, and very soon we will have a new Commissioner for Health. So we're continuing.

But fortunately, some of the members of the previous Parliament have been re-elected. So we are continuing our contacts, and we have, momentarily, a very good contact with the Chairman of the Commission for Health, and we will approach the Commissioner for Health, which will come from Hungary. And so all these people, including, of course, the stakeholders, signed our manifesto.

You see here the 10 action points of the manifesto that have been summarized and signed by the members of the European Parliament, representatives of all the different stakeholders, and all these individuals committed their organization to the further implementation of this manifesto, which is very important in our strive for finding funding for the further implementation of these different action points.

Indeed, we will work in two directions. We have a top-down approach and a bottom-up approach. The top-down approach is where we approach the different elements of the European Organization, the European Parliament, the Commission, and the Council of the European Union, where we can propose a framework and find sponsoring for projects that then can be proposed to the member states.

But at the same time, we're also in contact with the national organizations of urology, gynecology, physiotherapy, the nurses, and the Ministry of Health in the different countries, including the members of the European Parliament from individual member states, in order to see what are your priorities in your country? How can we link the European aims to your national aims in the framework of your national health care system, your cost environment, and the actual challenges that you have in your health care situation in your individual country?

And in doing so, we hope indeed that we can achieve a cooperation both from the European administration and from the national administrations in order to implement at least some of the action points. And as I said before, not every country will go for all 10 action points, but they can make individual choices depending on the individual situation in member states.

The slide. Thank you for your attention. I think, yeah, well, that's the good news. That indeed working with policymakers is slow cooking. We have to be patient. It's not going very quickly, but we're very happy that, indeed, the EU for Health steering group on the 25th of March this year decided that, in the aspects of health promotion and disease prevention, continence health was accepted as one of the priorities in the framework of the EU for Health Program, which is very important because, in the coming years, sponsoring projects will be linked to these projects that are included in these priorities of the EU for Health steering group.

So in summary, 55 to 60 million Europeans suffer from continence health issues. It definitely has an impact on productivity and has a significant economic burden that is calculated at 69.1 billion in 2023 and could raise by 25% to more than 100 billion by 2030. Important to note is that there is also a gender disparity because the economic burden of urinary incontinence is four times higher for females than for males.

And we have to realize that continence health treatment impacts the environment and has a huge impact on CO2 emission that will only increase. And so there is indeed an urgent need also to change that. We also conclude that continence health problems are present in people of different stages of life and in a wide variety of health conditions—for example, pregnant, postpartum women, aging population, population suffering from mental health issues and neurodegenerative diseases, but also patients with cancer.

But we are really convinced that there is a great potential to reduce the economic burden through prevention and better management, and that early continence assessment by qualified health professionals can indeed deliver a patient-centered and cost-effective care pathway.

So here again, this is the website, the address where you can find all the documents, and we're very happy to have your feedback on this, or through Diane or directly through me, because this is work in progress and all input from interested people is welcome. Thank you very much.

Diane Newman: Thank you very much. That was excellent, and it's really going to be of big interest to our viewers on UroToday. And it's exciting that actually you're being proactive on this. I haven't seen anybody else in the world, especially in the United States, doing this. But it's now on the list that they're going to look at continence health, and I think just that in itself is a huge step. So, thanks so much for presenting this.

Philip Van Kerrebroeck: My pleasure.