Quality Of Life In Patients With Obesity

The expert speakers in this webinar answered the remaining audience questions after the event. Here are their answers:

Q1: Is the 'Weight Self-Stigma Questionnaire (WSSQ)' is an acceptable PROM for stigma? If so, do you know why it wasn't considered by SQOT?

A1: Ronald Liem "We did consider the WSSQ I & II and SSI-B for Stigma.; They were not considered suitable for research, nor clinical practice by both PWLO and clinicians"

Q2: Are there any specific experiences of EASO COMs members of using electronic platforms (instead of paper based questionnaires) to gather PROM data? Is BODY-Q available in an online platform? Has anyone used it on Google Forms or suchlike?

A2: Ronald Liem "The Body-Q questionnaires are freely available for (non-profit) organizations. See the link that I shared in the Chat earlier. There are software providers, who sell tailor made solutions to send out questionnaires and acquire the data"

Q3: Would using PROMs such as BODY-Q before and after a brief diet and exercise intervention of 6 weeks be appropriate and useful, or are there specific PROMs for shorter interventions?

A3: Ronald Liem "You would expect that very small effects in health improvement will not yield big changes in QoL; but that is to be investigated!!  "

Karen Coulman "Just to add to point three - I did see a paper that measured the BODY-Q at 6 weeks but I think it was after surgery, so obviously more dramatic changes happening. So there is certainly no reason why you couldn't use it at 6-weeks after an intervention. I guess turning the question around, I would ask, do we think that 6 weeks is long enough for the particular intervention to have an impact on health? If we think that it probably is, then I see no reason why you couldn't measure HRQL at 6 weeks."

Nadya Isack "In my opinion, yes - anything that shows how well something is working and what benefits are coming to the patient"

Q4: Have the SQOT consensus been published already, so we can use the recommended questionnaires? Have these questionnaires agreed with other task forces like IFSO?

A4: Ronald Liem "Meeting one is published; see attachment. SQOT2 manuscript is under eview at the moment. SQOT3 manuscripts is in preparation"

• A publication contributed to the discussions by Ronald Liem: Vries et al 2022 Outcomes of the first global multidisciplinary consensus meeting
• Another resource – a tool to capture QOL in children and adolescents however is not obesity specific. The PedsQL Measurement Model is a modular approach to measuring health-related quality of life (HRQOL) in healthy children and adolescents and those with acute and chronic health conditions. The PedsQL Measurement Model integrates seamlessly both generic core scales and disease-specific modules into one measurement system.

Transcripts are auto generated, if you spot an error, please email enquiries@easo.org

Hi everyone, thanks for joining if you've just logged in. We will just get started and we have a lot to get through today so thanks very much for joining this EASO coms webinar. This is actually the first webinar of the 2023-24 season so thanks a lot for your interest and it's nice to see you all after the summer break.

So I am called Lisa and I'm just going to quickly introduce the house rules for the webinar before I hand over to our session chair and our speakers. So the first 45 minutes or so of the session will be the speaker presentations and at the end we'll have a Q&A so please do feel free to drop your questions into the chat or you can save your questions for the very end and raise your virtual hand and use your microphone. I would really encourage you to keep your cameras on if you can.

If you are in a position to keep them on it would be great and please do feel free to use your microphone in the Q&A at the very end. So it is a really informal setting so you are really invited to participate. Please follow EASL on Twitter and LinkedIn.

I'm going to share the links to those pages and also your feedback on this session is really really valued so I'll share a feedback link at the very end towards the Q&A time and wrap up. So I think that's it from me for now. The session is recorded so you will be able to access the session on EASL Connect after the event and you will be updated about that.

If there are any session resources to be shared I will also share them with you. So thanks again for joining and I'm going to hand over to our Chair of the session, Andrea Curin, who is the Co-Chair of the EASL Research Management Working Group. Thanks.

Thank you. Thank you very much Lisa and thank everybody for joining today. It's a real pleasure for me to chair this first session of this season of the webinars of the EASL and in my opinion is a very important session because we'll explore the significance of patient-reported outcome measures, also you may know them as PROMs, and quality of life in patient care and obesity management and we will find out how PROMs empower patients to report on various health aspects, also the crucial role of the quality of life in patient care, and we'll see how both of these PROMs and quality of life are vital for a good obesity treatment delivered by all of us that are clinicians.

We also hear about PROMs measurement methods, how we can measure them and quantify them, the importance of PROMs in obesity management and also, this is also important, we find out about the international standardizing quality of life measures in obesity treatment initiative which aims to homogenize the quality of life measures in obesity treatment in collaboration with people living with obesity and healthcare professionals. Therefore, I'll just introduce the first speaker which is Nadia Isak and she will speak about the patient perspective. She's a patient advocate for people living with obesity and trustee of the Obesity Empowerment Network.

I believe that her talk is pre-recorded. So please Lisa, thank you. Good morning and good afternoon everyone scattered around in different locations.

My name is Nadia Isak and I'd like to thank you very much for attending this webinar which is the EASO quality of life in patients with obesity tools and techniques for clinical practice. Firstly, just to declare my disclaimers, I have had compensation for travel and expenses from the squat initiative. Firstly, I would like to tell you a little bit about myself and the most important thing to know about myself is that I am a person living with obesity and in addition, I'm also a vocal advocate for people living with obesity.

I feel that the patient lived experience is vital. It must be included in any healthcare discussion regarding obesity management. I'd also like to give you a little bit of background information about myself.

I have lived with obesity for my entire adult life. My journey has been very long and arduous towards improving the quality of my life which is sadly the standard for most of the people living in the United Kingdom. To put it very plainly, prior to my gastric bypass surgery that I had in December of 2018 here in London, I was weighing on the scales at 164 kilos.

My height is 164 centimeters. I'm moving onto the metric system so that put me in a BMI range of approximately 61. So effectively, as clinicians, you can understand that my quality of life was severely impeded.

I was fortunate enough to be approached by the squat initiative in 2019 and consequently attended the first squat meeting in that year in the Netherlands which led me to realize that there was a huge difference in perceptions of what healthcare professionals thought about obesity and what patients thought about obesity. This clearly came out in our first conference where we, both patients and healthcare professionals, questioned as to how do we measure these problems and are they indeed effective. Are the current questionnaires in circulation achieving their aims from both the healthcare professional stance as well as the patients? In my opinion, this webinar will highlight these problems and try to show you how PROMS can really help both you, healthcare professionals, and should I say especially the patients.

So from a lived experience perspective, from what I can recall, I was never actually asked or given any PROMS before my surgery or whilst leading up to my surgery as a measurement tool. I think the only questionnaire I was asked to complete was a standard psychological one and having lived with mental health issues my whole life, I was quite familiar with these. But these questionnaires do not actually ask anything about my quality of life from an obesity perspective.

I do understand now through all my advocacy and from listening to other patients and through my own self-education that the usage of PROMS in the United Kingdom is indeed a postcode lottery in terms of which trusts use them, which clinicians use them, and which current questionnaires they use themselves. So as a person living with obesity, how do healthcare professionals actually determine the outcomes of bariatric surgeries or even going through the process leading up to the surgery from a measured qualitative perspective that is relative, that is, excuse me, that is relevant to the patients? The most important part of PROMS, I believe, from a patient lived experience is quality of life, QOL, and that is the term I now use the whole time when talking about my lived experience of obesity. Did any healthcare professional ask how I felt about talking about my weight using numbers? And that's a big no, not back then.

I get extremely anxious talking about numbers and even contemplating the thought of talking about my weight in numbers now makes me anxious. I recently went for a scan and was told to get on the scales by the nurse. I declined and asked the reason why and explained that I'm a person living with obesity.

The dumbfounded look I received from the nurse was incredulous and the nurse said, but you don't look obese, and then told me to get onto the scales. Even within the bariatric clinic themselves, I'm triggered by scales, I'm triggered by numbers, but this was never considered when speaking to healthcare professionals at any stage. It was always just get on the scales, what do you weigh? Let's take the number, let's crunch the numbers.

However, once I'd lost over 20 kilos and furthermore, I realized that I could measure my own quality of life in different ways. How many steps could I now take as opposed to how many steps I could take prior to surgery without having to rest, sit, or even losing my breath? Also, it was the ability to reduce the size of my clothing and also, which nobody really remembers, is to be able to wear different types of clothing. For example, moving from an elasticized waist to zips and buttons, the ability to sit in a chair that has arms, and also the confidence to walk into a room and without the first thought entering my mind that I'm indeed the largest person in the room.

So, I think to myself, in an ideal world, how would I, as a person living with obesity and an advocate for people living with obesity, want to redefine the usage of PROMs within a clinical setting? I believe that what should be done is that the questionnaire should be used across the board, asking the correct qualitative as well as quantitative questions. Measurement tools such as what I have just said, how many steps can you walk right now without having to rest? What style of clothes are you wearing? Do you have the ability to sit in bar chairs, should I say perch on a bar chair, or sit in a restaurant booth? Do you walk into a room and scan the room for people who are larger than you? Questions, qualitative questions like that. It may seem silly to you, but these are the ways that the majority of people living with obesity actually judge themselves and measure themselves.

And then, let's say, moving forward two years post-surgery, which you know is generally termed as the honeymoon period, then ask those same questions and you compare the results. So, effectively having both measurements in quantitative and qualitative form. In other words, using non-scale victories, NSV.

We need to adopt the usage of NSVs more because it is a more empathetic way of dealing with people who have suffered criticism, self-internalization of stigma, external stigmas, and many more complexities that have effectively stopped people like myself living with obesity from having any form of decent quality of life. Now, what is quality of life? I know that my esteemed colleagues on the panel here will talk about quality of life and how you measure it, but I hope it comes across clearly what quality of life now means to me and I hope and I'm sure that it resonates within the community of people living with obesity. What we also need to understand is that the quality of life is not only physical, but it's also psychological and the mental health aspect is extremely important as well.

We need to look at those problems that identify how we are feeling about ourselves pre and post intervention and treatment. I must be honest, thankfully the coding of quantitative and qualitative analysis is not left up to myself. It is left up to those, obviously those people who are experienced enough to be able to do that.

From my involvement over the past few years with PROMs and their development and usage, as well as, and I must point out, looking at the newly published materials presented by squat at Eco23 this year, it is becoming more and more evident that we need to look at using these PROMs across the board to be able to determine the effectiveness of obesity intervention and treatment. And what is also vital to remember is that these PROMs, if we use them effectively pre and post surgery, will show to the patient how far they've actually come on a journey, rather than just quoting numbers. This plays a huge part in helping people living with obesity to understand and also to unpick the self-blame and to show how incredibly courageous patients are, which we sometimes forget.

And with the help and understanding, we can turn around and look at the results of pre and post PROMs and say, wow, look how far I've come. I know that what I'm hoping for is very idealistic and it's not as simple as I've put forward. The most important thing to remember is that it's always in the past been the emphasis of clinical data.

However, when actually engaging and speaking with a person living with obesity, you must remember these non-scale victories. Even if you do not have the PROMs that will identify them, how about just asking the patient in front of you? That qualitative information for us actually makes far more sense than the quantitative information that you seek. And as I said before, it helps us to understand that we have achieved things that ordinarily couldn't be achieved before and has dramatically increased comes again, our quality of life and has allowed us to regain our health.

Thank you very much, everyone. I look forward to answering more questions and answering any types of queries you may have. But I'll just leave you with this last slide just to think about a little bit more, because you must always remember that the person sitting in front of you is a person living with obesity.

Thank you. Thank you very much, Nadia, for this very, very beautiful talk from the patient perspective. I think that you gave us some very strong messages and we'll have the discussion in the end of the webinar.

Now, let me introduce you to our second speaker, Dr. Karen Kuhlmann from Bristol Medical School, the University of Bristol. She will speak about the introduction to quality of life and the importance of the quality of life measures. Karen, please, the floor is yours.

Thank you. Can everyone see that okay? Great. Okay.

So, hello, everyone. My name is Karen Kuhlmann. I'm an obesity specialist dietitian and a researcher at the University of Bristol.

So, I first became interested in quality of life in obesity during my PhD, which I completed back in 2016. And since then, I've continued to be involved in research in this area. So, the only potentially relevant disclaimer that I have related to this presentation is that I have taken part, similarly to Nadia, in squat meetings, standardizing quality of life measures and obesity treatment initiative and have had some travel and accommodation costs covered.

So, what I'm going to cover in my presentation is firstly, what are patient-reported outcomes and what is health-related quality of life and how do the two link? Why is it important to measure PROs? How do we measure them? How do we select an appropriate measurement tool? And what are some of the advantages and disadvantages of PROs? So, a patient-reported outcome is defined as any report of the status of a patient's health condition that comes directly from the patient without interpretation of the patient's response by a clinician or anyone else. So, this last point is a really key point that I'm going to come back to in just a minute. So, a PRO that we're often interested in is health-related quality of life.

This is a multi-domain concept that represents the patient's general perception of the effect of illness and treatment on physical, psychological and social aspects of life. So, health-related quality of life is a type of PRO and so throughout the rest of this talk, I'm going to mainly talk about PROs. So, as I mentioned, PROs, they're essentially anything that is reported directly by the patient.

So, it's important to note that PROs differ from observer assessment of symptoms. So, in the picture on the left, you can see a clinician asking a patient how far they can walk and then making an interpretation about the level of difficulty that patient experiences with walking. Whereas in the picture on the right, the patient is directly reporting their level of difficulty walking.

So, this is an important distinction to make. Patient-reported outcomes come directly from the patient without any interpretation from anyone else. So, why is it important to measure PROs, including HRQL, in obesity? I'm not sure I need to persuade you anymore after seeing Najia's beautiful talk, but I'll just maybe bring in a few other points related to that.

Well, firstly, lots of previous research has clearly demonstrated that obesity is associated with reduced quality of life. So, it seems obvious that this should be one aim of interventions to treat obesity. Secondly, patients and professionals do not always agree on the most important outcomes.

So, this is a paper from my PhD where we compared professionals and patients' views of importance outcomes of bariatric surgery within a Delphi survey, and we found some interesting differences. So, for example, patients but not professionals prioritised feeling able to live a normal life and excess skin following weight loss, whereas professionals but not patients prioritised weight and readmission rates. So, I think this just further highlights that nice point that Najia was making, that weight loss is not necessarily the most important thing to patients.

And following on from this, health-related quality of life has been selected as a key outcome measure for obesity treatments. So, here we developed a core outcome set for bariatric surgery with both patients' and professionals' perspectives, and health-related quality of life was prioritised as one of the core or key outcomes to measure. Similarly, McKenzie and colleagues developed a core outcome set for behavioural weight management interventions, and health-related quality of life was also included as a core outcome.

And because of this, there is a whole international initiative dedicated to how we can improve the measurement of quality of life in obesity, and I believe Ronald will tell you a bit more about this. But perhaps most importantly, regardless of what the research tells us, as health professionals, we need feedback. We need feedback on the treatments and services that we offer to ensure that we're offering things that are going to make the most difference to patients' lives, and we need them to tell us what does make the most difference to their lives, because that is ultimately what we're all here for, to improve our patients' lives or to try and help.

We also need to collect data from PROs so that we can inform future patients who are making decisions about treatment options. It's important that they have all the information about the impact of a treatment, not just on how it will impact clinical outcomes, but how it will impact their overall quality of life. So how do we measure PROs? Firstly, we need to decide specifically what to measure that is relevant to the intervention and the clinical situation.

Secondly, decide at what time points to measure it, and thirdly, decide how to measure it. So the first step is to decide which health domains are likely to be affected by the intervention, and this will depend on your intervention. So the example that I'm going to use here is a group-based physical activity intervention for people living with obesity.

So as a group, you sit down, you discuss with people living with obesity, and you come up with the following possible patient-reported outcomes that might be relevant to measure. So we've got physical functioning, emotional well-being, social functioning, and physical activity levels. So if we go back to our definition of quality of life, we'll remember that it includes physical, psychological, and social aspects of life.

So it may be that we can find a single measure of health-related quality of life that includes those first three outcomes. If we also want to measure physical activity levels, then we might need to look at a different measure for that. You also need to choose the right times to measure it when you anticipate that you might actually see a difference from the treatment.

So it's, of course, important to measure PROs before the start of treatment so that you have a baseline to compare to, but it's important to think carefully at what time point or time points you will measure it after treatment when you expect that you might see a difference, and when is most important to patients. So again, important to get people's living with obesity's views on this. So once you have decided on… …stay next available… Oh, sorry, I think someone needs to just put their mute on.

Once you've decided on exactly what you want to measure and when, the next step is to decide how to measure it. To measure PROs, we usually use standardised and validated questionnaires, which are called patient reported outcome measures or PROMs. But how do we go about choosing a PROM? Because there are so many of them.

This was a systematic review that we published 10 years ago now, and we found 68 different PROMs reported in the bariatric surgery literature, and there have been many more developed since then. So to help with your decision around which PROM to use, it's useful to know a bit about the different types of PROMs, which we can broadly group into four different categories. So firstly, we have generic PROMs, and they assess general health and quality of life, and were developed to be relevant to all patients, irrespective of what condition they may have.

So you can use them across a wide range of populations. However, because they're generic, they often don't assess any health domains in detail, so they often get used in conjunction with a more specific questionnaire. So a couple of examples of generic health-related quality of life measures that you may have heard of are the SF36 and the EQ5D.

Secondly, we have population-specific PROMs, and they're designed to assess health in a particular demographic group, for example, children or older adults. So they're a bit more tailored to the population. So for example, questionnaires for children might use more pictures rather than words to make them more accessible.

Thirdly, we have disease-specific PROMs, and so these assess symptoms specific to a particular disease. So there are quite a few obesity-specific health-related quality of life PROMs, and they're designed to measure areas that are more specific to the impact of obesity on quality of life. So things like perhaps body image, stigma, self-esteem.

And so these questionnaires have the advantage of only measuring health domains which are directly relevant to a particular health condition. Finally, we have domain-specific PROMs, and these are used to assess a particular aspect in more detail. So for example, you can find questionnaires that focus purely on depression or pain or fatigue, and so they give a much more detailed insight into a particular aspect of health.

So when deciding which PROM to use, it's important to look at how good they are, and we can do this by looking at studies which have evaluated their measurement properties. So this information should usually be in the paper that has reported the development of the questionnaire that you're interested in. There are quite a few different properties to consider, as you can see on this slide, but I just want to draw your attention to one of them, which is content validity.

So this is considered to be the most important property of a PROM, and it is defined as the degree to which the content of a PRO instrument is an adequate reflection of the construct to be measured. So essentially, you want to be confident that the questionnaire is adequately capturing what it is supposed to be capturing, and the best way to check if a questionnaire has content validity is to look at how it was developed. PROMs are meant to assess things that are important to a particular population or patient group, and so any good questionnaire should have involved patients or the public in the design stage of that questionnaire.

So why this is so important, you know, if the content of a questionnaire is not relevant and comprehensive, then all the rest of these properties really don't matter if you don't get that basic foundation right. So important to check the literature to look at the measurement properties to help you to choose a good PROM. So a few other things to think about.

You need to check that the PROM you want to use has been shown to be valid and reliable in your population. So some measures are validated in a population, and if you want to use it in a different population, you need to check that it's appropriate to do this. Also need to think about the burden on people of completing questionnaires if you choose a really long questionnaire, or if you're getting people to complete lots of different questionnaires and at lots of different time points, then it could affect completion rates.

Another point is that some validated questionnaires do have costs associated with their use, and there might also be costs depending on when people are filling in the questionnaires to use like online survey software or postage stationery costs if they're not doing them at clinic appointments. And also important to think about whether the questionnaire that you want to use has been validated in the language that you need it. To help you with choosing your outcome measure and reviewing its measurement properties, there's an initiative called COSMIN, which stands for Consensus Based Standards for the Selection of Health Measurement Instruments.

And it's worth having a look at their website, which has lots of useful features, a few of which include a taxonomy of measurement properties, tools to help you find the most appropriate measurement instrument, and a really useful searchable database of systematic reviews on different outcome measures. So ideally, you would choose a PROM that already exists rather than creating a new one, because it is very labour intensive to create and validate a new PROM if you do it properly. But what if there genuinely is no suitable PROM for what you want to measure? Firstly, you could think about whether there is an existing PROM that you could adapt and revalidate.

But if you do want to develop a completely new one, there are courses that you can go on that will teach you how to do it properly. And I'm not going to go into that today. So what are some of the advantages and disadvantages of PROMs? So as we've mentioned, PROMs are patient centred, and so they ensure that the patient's experience is taken into account when we're evaluating an intervention.

So generally, they are an inexpensive method of assessing outcomes. So unlike some clinical outcomes, which where you need the patient actually has to come in and see a healthcare professional, requires health professional time, or requires an expert to interpret the results of a clinical test, questionnaires can be posted or emailed to people to complete in their own time. And because they're relatively cheap, you can administer them to large numbers of people.

So making them very efficient for data collection on a large scale. So you can collect data from patients in different geographical locations. So you can use them to gather data on a national or international level, as long as everyone is using the same PROM.

Another advantage is that they produce standardised scores, which means that the results can easily be compared between studies or different countries, again, as long as everyone's using the same PROM. As I've just discussed, there is a rigorous process of developing and testing PROMs to make sure that they are valid and reliable tools. But as with any tools, they also have disadvantages.

So although a lot of work goes into developing PROMs, patients still can experience difficulty in completing them. And when you think about it, it's it's hardly surprising considering that we're asking people to select one of a limited number of response options to describe their very individual and often complex health status. So it's useful to perhaps include some more open ended questions alongside a PROM.

Nadia was talking about qualitative work, there should be qualitative work that goes into the development of these. But still, it can be useful to give people the chance to have some open ended questions if they feel that the PROM that they've completed hasn't quite fully captured everything they wanted to say. Interpretation can be challenging.

For example, if we're looking at a particular score in a questionnaire, we often make an assumption that an improvement in that score by a certain number of points is clinically meaningful for all patients. However, everyone is different and these generalizations might not work for everyone. So in summary, PROMs such as health related quality of life hopefully have convinced you that these are key outcomes to measure for obesity treatments.

It's important to properly think through what to measure for your context and how to measure and and crucial to involve people living with obesity within this process to make sure that you are actually using relevant PROMs and have a greater likelihood of them actually being completed. Thank you very much. And that's everything from me.

Thank you very much, Karen, for this very beautiful and clear introduction on quality of life and PROMs and how to measure and interpret them. Please remember to ask questions in the chat for further discussion as Lisa mentioned in the chat, just to have the debate in the end. And let me introduce you our third and last speaker, Dr. Ronald Lim, which is a metabolic bariatric surgeon at Groen Hart Hospital and Netherlands Obesitas Klinik.

I hope I pronounced it well. I'm sorry if I did not. And he's also the secretary of the Clinical Audit Board of the Dutch Audit for the Treatment of Obesity and chair of the ESO Registry Committee.

So Ronald, please, the floor is yours. Thank you, Andrea, for the kind invitation. I will try to share my screen.

Is this OK for everybody? Yeah, I can see it. Excellent. So I have to congratulate the first two speakers on an excellent talk.

And I hope that I can add some clinical practice to that as you understand using PROMs in clinical practice is still quite new. So there is not a wide variety of evidence available, but I will share with you the things we've been working on and what is at hand. So these are my disclosures.

I receive educational grants and research grants from the mentioned industries. And I work as a bariatric surgeon in the Dutch Obesity Clinic in the Netherlands, as was said. So for me, the basis of my interest in data and outcome was originates at the early start of the Dutch National Registry.

And that was for me the starting point to get into detail with data management and clinical outcome. So why do we actually register outcome? And I think, of course, in the first place, it is to measure the efficacy of our treatments. And the first thing, things that we registered in the past are mostly clinical outcome.

But as said by Karen and Nadja, patient reported outcome and quality of life is getting more and more interest also in the field of bariatric surgery. And that is of great importance. So more than a decade ago, this guy, Michael Porter, he is an economist from Harvard.

He used his economic skills and ideas to redefine healthcare. And he came up with the concept of value-based healthcare. And I will not go into detail on that.

It's actually an equation between outcome and costs. But one of his key sentences he always uses is what's in it for the patient? And I think that is actually one of the most important questions that we have to ask ourselves as healthcare deliverers, if we consider our own treatments. And as mentioned earlier, also, PROM that we are discussing today, is a tool to clarify whether a patient has benefited from a certain treatment.

And this is how it used to be a patient trying to vocalize something that was actually imprinted by the doctor, him or herself. And luckily, and fortunately, we are talking on a complete different level now. And if we use PROS in a correct way, we can actually use these data to appreciate this data on a couple of levels.

And I will discuss that shortly. So the most important level, of course, is the individual a care of the patient, we call it a micro level. And the patient reported outcome on that level gives us a better understanding of the burden of disease.

And of course, is used using shared decision making nowadays, when we decide what treatments are feasible for a patient, I will discuss that later. The meso level is more about comparative of effectiveness. And when it's I think, a valid marker, also for efficacy of the treatment, it's an indicator of adverse consequences.

And it can differentiate between different surgical techniques. And I have a couple of examples that as well. And lastly, we can use PROM to actually improve the quality of our care on a macro level.

So it has a certain role in establishing definitions for quality itself. It's a real time monitoring way of quality. And it can be used to benchmark healthcare at large in a healthcare system.

So Karen already addressed this. And there are many, many reasons not to use it or not to do it. But I think all in all, we have to surpass these barriers and get ready, get on with it.

And, of course, a lot of people are anxious that it just adds another layer of complexity to the already existing complex data sets that we use in clinical outcome. But I think it's very important to engage the patients in reporting and in registries, as we do in the Netherlands nowadays. And that is important to know the priorities of the patients themselves.

And I addressed that already. Finally, it actually democratizes the patient, we as care deliverers understand better the patient perspective. And of course, it's all about what matters to the patients most.

And that is what we're actually measuring in PROM. So from a patient's passive role in the whole process, there is a transfer going on to a much more active role of the patient in this process. And we don't see the patient anymore as a data point, but as a participant in healthcare delivery.

So of course, there are always assumed challenges when we engage patients in our clinical processes. And many people must have heard these arguments actually not to engage the patients, but I try to have it otherwise. So we think that it's a very difficult relationship, patients, experts and healthcare deliverers.

And that is because we are afraid that patients personal beliefs and experiences actually influence their opinions. And also quite a lot of time, it's heard that we think that patient representatives do not fully understand the implications of their contributions. And within the squat initiative that has been mentioned before, we found out completely differently, of course.

So the wide variety of generic and disease-specific PROMs make meta-analyses and interpretations across studies very difficult. And we should not compare apples with pears. That is the most important thing if we use these kinds of data.

And you just heard from Karen, but I want to emphasize again, that there are so many different PROMs available already 10 years ago, and the amount is still growing. And only in these 68 different tools that were mentioned by Karen, there are almost 2000 separate items reported. And with this vast variety of tools available, it's so difficult to benchmark in registries and between registries, because we're not registering the same items.

So my own group also did a little bit of research in this field, actually together with the Bristol group. And we came, tried to come up with some recommendations what PROM to use in bariatric surgery. And we try to just grade the existing PROMs available in our field, looking at content validity and face validity, especially to see what PROM are actually of high quality and could be used in the field of bariatric surgery.

And it will not surprise you that there were not many PROMs that have a green smiley, and many available PROMs don't have the necessary quality to use them in clinical practice. So after this, we started our SQUAD initiative. Of course, it stands for standardizing quality of life measures in obesity treatment.

And it was started to improve international collaboration between people living with obesity and healthcare professionals working on our fields in the treatment of obesity. And we were looking for a consensus on what measures to be used to measure quality of life in our treatments. The first SQUAD meeting was organized in 2019 already in Amsterdam.

And in that session, we focused on moving towards consensus on the preferred patient reported outcome measures that were available already in our field. And we discussed and selected the key domains that were considered useful to measure quality of life in obesity treatment. So this is an overview of all the domains that were investigated.

You can see that there are differences in measured importance by patients, people living with obesity and healthcare professionals. And the persons living with obesity are colored in blue and the healthcare providers in red. And you can see, of course, there's some accordance, concordance between the two groups about a couple of domains, but there's also some striking differences.

And this is the summary of that first SQUAD meeting. And we decided on these domains being the most important to measure regarding quality of life in obesity treatment. And then after that, the existing PROM tools that were already available for those domains and of enough quality.

And you can see that for stigma, there is no proper PROM available. After that, we had an online meeting in 2021. And the last face-to-face meeting was prior to the Zoom Forward meeting in Maastricht last year.

And in those meetings, we made a final selection of the PROMs to measure quality of life. And not only in clinical research, but also in clinical practice. So the BodyQ is considered best available for physical functioning, physical symptoms, physiological functioning, social functioning, eating behavior, and body image.

The EIQOLITE is regarded the best to score self-image. The COLOS questionnaire is the most appropriate for measuring excess skin. And as I said before, there is no PROM available to measure stigma.

So how is it done in real life? And I will actually demonstrate how it was done in the Netherlands in our national registry. Many years ago, in 2015, there was not much at hand. And we decided to start off with a quite generic questionnaire, the RANT36.

It's the free version of the SF36 that was mentioned by Karen already. And you can see that using this in a national registry environment, we can come up with quite some good numbers, a couple of thousand per year, where we have both preoperative and one year postoperative measurements. And at first glance, you think that the improvement of quality of life is quite evident if you look at these graphs.

And also if you analyze it in a spiderweb like this, this is one year results of the RANT36 and this is sleeve gastrectomy versus gastric bypass. But actually, if you look more closely, and you do a scatter plot, then everybody will appreciate that maybe the averages tend to see some improvement, but the correlation is quite poor. So we had to conclude that RANT36 was too generic and was experienced as too little distinctive to actually act upon it.

So with that in mind, we were looking for a proper disease-specific scale. And we decided after investigating this in a national task force that was formed within DICA, the Dutch provider of all our surgical registries. And we decided to use the BodyQ as a disease-specific PROM in our national registry.

And we started off with the basic BodyQ that was provided by Harvard and McMaster University. And then with the work of De Vries, we added a complementary eating skill to that that was also verified within the BodyQ process. And that made us our PROM, the ObesityQ 2.0. And that is the PRO that we're using now.

So we're investigating all our patients that have bariatric surgery in the Netherlands on these domains. And the first results are recently published in a couple of manuscripts. So in this publication, we were only looking at eating behavior and eating-related distress and symptoms after bariatric surgery.

And there is a difference between rheumatoid gastric bypass and sleeve gastrectomy. And you can appreciate that if you look at these outcomes, that eating disorders are less present after sleeve gastrectomy compared to rheumatoid gastric bypass. Another example is this publication not too long ago in obesity surgery, where we actually looked at body image and weight loss as outcomes using the ObesityQ.

And you can see that there is a nice improvement of the experienced body image and that it is weight-related. These are still unpublished data. So I can show you these quickly.

These are the median scores of the domains, social functioning, physiological functioning, physical functioning, and sexual functioning before and one year after surgery. And you can see that most domains improved dramatically after surgery. And these are the six big domains, also still unpublished data.

We're working on a manuscript. So hopefully early next year, we will be able to publish this. You can see that all domains in the ObesityQ improved one year after surgery.

In the Netherlands, we use a national registry already for eight years. And we use an audit cycle to use the data and analyze the data to improve the quality of care. And this audit cycle was already thought of by Ernest Kotman, a Harvard surgeon, 100 years ago in Boston.

And to date, his theories are used within our registries to improve our quality of care. And this is just an example how you can use this even in your outpatient clinic. This is just a screenshot of the Kotman dashboard that we have within our national registry.

This is actually data from my own clinic. I just made a screenshot earlier today to show you. This is the 2022 data on ObesityQ.

And you can actually see that the blue line is the line of the patients within my clinic. And then at some graphs, you can actually also a small gray line. And that is the national benchmark within the same domain.

So you can see that there is a lot of overlap between my clinic and the national benchmark. And that is not for nothing because only two clinics started using ObesityQ in the first year of registering ObesityQ in our national registry. We had a dual system with still round 36 in place for one more year.

And of course, being one of the biggest centers in the Netherlands, our results very much influenced the national average. But by now, all 18 clinics in the Netherlands are using ObesityQ. So probably within one or two years, we can actually show you a graph where center averages are not necessarily in line with the national averages.

So using PROM and the data behind it to make it analyzable and presented to your patients on a micro level, as mentioned earlier, will help us use shared decision making more and more. And of course, in the past, more or less, the doctor decides. Of course, we informed our patients.

And when the patient signed for that, informed consent was achieved, and then a patient would get a treatment. But I think nowadays there is a new context and we should talk more about appropriate care. And that is care that is necessary and proven effective for every patient.

And that is what we actually offer to our patients. And then, of course, to the right patient at the right time, and then we have a good treatment. So the ingredients that you have to have for good shared decision making in your clinics is, of course, the data.

If there is no data, you cannot use it for shared decision making. And you have to understand more and more what outcomes are important to the patient. And that is what Nadia already said very specifically.

It is not about the numbers. It is not only about weight, but it is how you perform in social life, how you perform in working life, before and after surgery that actually defines the efficacy of our treatments. And you have to do that in a good conversation.

So we have to take time to inform the patient before and after surgery. So I want to conclude with this. It is a very good saying by Edward Deming, also a very well-known scholar.

We need data and we have to use the data. Thank you very much for your attention. Thank you very much, Ronald, for this very nice presentation from the clinical perspective.

Actually, I am a clinician myself. And as you mentioned, the PROMs and quality of life measurements included in the clinical practice is very new for us. And we have to learn how to do it and to have homogeneous tools.

We have time, Lisa, if I'm not wrong, for a couple of short questions, right? I'll start with the second one that we got. It's a short question for Nadia. Nadia, do you think that the patient needs to share to the healthcare provider all the goals that the patient has, you know, what the personal goals they want to achieve? And I mean, the most intimate goals regarding their life, their social life, their sexual life and so on.

Do they have to share all of these goals with the healthcare provider? What do you think? What's your perspective? Or should we respect the, you know, if you have one goal and you find it difficult to share, how would you manage it? Or what do you think? I think with respect to that is, you know, people living with obesity have undergone extreme amounts of stigma their whole life and have huge issues with regards to being open about this stigma, self-internalization, external stigma. So to be able to sit there in front of a patient and say, well, tell me all your goals. I want to know everything, write it down.

It can be seen as quite intrusive, especially from the fact that, and I'm not trying to demean anything, but in the past, you would have had some bad experiences with healthcare professionals. So you have to bear that in mind that the patient's not being confrontational or evasive. They're just really nervous and frightened to be honest.

It's sad, but what could be done then is a compromise. You know, you've got to say, you know, there are lots of things that could affect you. Are there any ones you'd like we can measure together? But there might be some that you may want to keep in a journal at home and you can then say the more intimate things, the things you don't want to share with me and to be able to allow the patient again, you're engaging with the patient to say, you don't need to tell me everything I know, you know, relatable things.

And it also does depend on the patient's relationship with that specific healthcare professional. They feel happy enough to be open and honest about everything. That's fantastic.

But again, you know, that would be my take. Yes, I think it's a great, great answer on this. I will move on for the interest of time to the next question, which is an open question actually for the three of you.

In what aspect exactly does PROMS help patients with obesity? The PROMS help recommend surgery or medication? How can the healthcare provider conclude from a patient's PROM to recommend the suitable therapy? What do you think? Nadia, I will start with you from a patient's perspective and then with Karen and Ronald. Okay, I'll be very quick. I think what would be good is to just show, and again, it would be a generalized view, the patient's being asked number one, what do they want to achieve? Generally at that stage, it's a choice between a sleeve or a gastric bypass.

But as Ronald had showed you, sometimes those data, you know, can be conflicting for a patient. But I think it should be shown to the patient what they can achieve, depending on what treatment is offered, how it can over a period of time, and these things therefore are relatable to the patient, i.e. physical functioning, sexual functioning. So they can put it into words, not just, they can imagine it and not just seems like some pipe dream.

Thank you. Karen, please, what do you think about this? I think I'm going to actually refer this one to Ronald because he was describing it. He was describing it very well with that individual versus meso versus macro level and how PROMs can be used in those different ways.

And I'd be interested to know his view on how they're used on an individual level in clinical practice a bit more because I think in the UK, we don't do this very much. I think it's safe to say. I think actually, I might add a brief question to that.

Does collecting PROMs and using them in the clinical practice actually means shared decision making process or it's a different thing? I think that fits here in Ronald's part. Thank you. Yeah, happy to answer this question.

It's a very good question indeed. Of course, there are a couple of options for the primary surgical treatment of obesity. And as Nadja correctly says, bypass or sleeve are the most used primary procedures.

And I think first, you always have to look at clinical arguments why you should consider one over the other. But if there is not a big difference for the patient, then there's something to choose. And then I think quality of life issues are really at hand and should be taken into account for a patient to actually decide whether to choose a bypass or a sleeve for that matter.

But to be able to do so, you have to build up a body of evidence. So you need the data. So capturing the data is the first step that you have to take.

And then with that in and with the clinical outcome next to it, then you can actually see what operation causes to improve or decrease quality of life in a couple of domains. And then of course, it's to the patient what domain is more important, what matters most to the patient can only be answered by the patient, him or herself. So for me, it's a no brainer.

But we need to data and even in the Netherlands, where we're used to using promo ready and daily practice on a more regular basis, our database is not that big yet. So we're actually building up on that. And then the longer you're actually acquiring these data, the more accurate the data will be to present back to the patients who still are in the process of deciding what operation they should have or not.

Thank you very much for the answer. I think that we are running out of time. There are a lot of questions actually in the chat and they will be collected after the session and the speakers will answer them and they will be posted on the Yasso Connect website along with the video recording.

So thank you very much all of you for joining us and very, very beautiful webinar on a very interesting topic that actually we are still learning, but we have to do it quickly and right in order to co-design the obesity management together with our patients in the interest of them. So thank you very much once again and see you next time, the next webinar.