ERNICA Research Collaboration Webinar on Quality of Life

Uh, um, webinar on quality of life on behalf of the Ernica Research and collaboration webinars. Um, we've invented this series in the workstream Quality of Life, which is a relatively young, um, innovation of Ernica, and we're very happy to, um, have two renowned speakers today, which I will introduce. A little bit later. What are we dealing with today? We decided to start from scratch and to start from the very beginning. What is quality of life? What are patient reported outcomes? Uh, what is health related quality of life, and we want you to understand the concepts that are relevant for um these terms and the measurements that are available, um, with particular focus on pediatric surgery. So our aim is to provide you with an overview of the content, uh, concepts, um, quality of life, patient reported outcomes and health related quality of life, and how is it evaluate evaluated, how is it measured, um, and which uh population do we focus on in advanced pediatric surgery? Um, at the end, as a conclusion, we would like you to, um, to get an understanding of what the benefits are and the patients you care for, um, and which, for which research projects that could be relevant. Also, it would be nice if at the end you would get an understanding of what are the gaps of knowledge within pediatric surgery on that topic. My name is Jens Sterman. I'm a pediatric surgeon here in Hanover Medical School, which is one. Of the two German Ernica Centers, um, and I will moderate this seminar and I will now introduce you to the two experts, um, who really have dedicated their life to, um, quality of life studies. Our first speaker is Mikaela De Maglom. She's an associated professor and a doctor of philosophy and Medical Science and a researcher at Sarenska Academy in Gothenburg, Sweden. And also at Karolinska Instituted in Stockholm, Sweden. She has a clinical background as a senior pediatric nurse specialist, and Dr. Delmark has been the vice head of the Swedish Swedish registry for advanced pediatric surgery for more than 5 years. She leads Swedish and international research projects, acts as a guest editor and author and invited faculty for quality of life and children with rare pediatric surgical malformation and their families. Her research involves, for example, children with different congenital malformations like gastroschisis, bladder atrophy, spina bifida, Hirschbung's disease, and she has um a special focus on esophageal atresia. She's the key researcher responsible for the development of the first con uh condition specific quality of life instrument for children with EA. Um, the EA call questionnaires, which are currently being translated and validated in 18 countries. She contributes internationally, for example, as a board member of IEA and the Medical Advisory Committee. She's my co-chair in the Quality of Life Working Group in Ernica and um she is um member of uh expert member of the Panel Europe for the World Health Organization Collaborative Global Network for Rare Disease. So I'm really happy that uh Mikaela is gonna give her um talk today. Um, and the second speaker is, uh, Doctor Andre Rietman. He is a senior neuropsychologist at the Department of Child and Adolescent Psychiatry and Psychology on the Erasmus Medical Center, Sophia Children's Hospital in Rotterdam in the Netherlands. He has a bachelor in occupational therapy from the University of Applied Science in Amsterdam. He's a science master in neuropsychology from the University of Leiden and a PhD in Medical Science at Rotterdam University. He has worked in rehabilitation medicine, education, pediatric neurology, surgery, and child and adolescent psychiatry and psychology. He has published extensively in genetic disorders, for example, neurofibromatosis, tuberous sclerosis, Angelman syndrome, and fragile X syndrome, rare anatomical disorders as uh congenital diaphragmatic hernia, esophageal atresia, gastroschisis, and omphalocele. And quality of life and sensory processing. He is a member of the Dutch Psychology Association, NIP and the Dutch Neuropsychology Association NBN, the Society for Behavioral phenotypes, and he participates in the Ernica Working Group on quality of life as well. Um, we are accompanied by the two, Ernica organizers, um, Carlos and Olivia, who will help with technical issues. And before I hand over to Andre, who is, uh, the first speaker today, I would like to Remind you that um it's really helpful if you keep yourself muted in this conference. Um, when you're having questions, uh we will give you a short um link on that and you can do that through the tool in the menu of the GoToWebinar platform, um, and please, before you speak, raise your hand and otherwise this will end up in complete chaos. So we're really happy that at the moment, 36 of 53 people who registered are online and we hope to have um a really nice hour with you on that topic with two excellent speakers, um. And I would like to thank you that you're participating and I would like to thank the speakers again and I would like to hand over to Andre who's um starting his speech with a very, very interactive approach, um, which you can see now. So have fun and I'm wishing you a, a very nice hour on quality of life. As you can see, you, we've got this, uh, uh, this world map here, um, and the first thing I'd like you to do is get your cell phone, and go to the menti.com site, which is a site for these kinds of interactive presentations. And if you went to menti.com, you can use the code above, so 28772076 and on the bottom right side of the screen you will find this little mannequin and as soon as people will log in, I will see how many people have put their somebody swimming in the ocean in the in the North Sea at the moment or living on a very small island. Um, so one person, 2 persons logged in, and now we can see where the most participants of this webinar are. I think I'm going to wait until we have about 20 to 30 responses. We now have 39 attendees. You're really fast, um. After this, uh, it will be more about quality of life. So this is first to see who we are dealing with. It's also good and humbling to see how small Europe in fact is in the, in the scale of the world, and already 11 people joined us. There's at this moment, there's a lot of people coming from the Netherlands or Germany. And you can't blame people for confusing both. Especially last years for a lot of people like from, from Italy or Spain. Dutch and German kind of sound the same in some words. OK, we are up to 130 people. It's nice to see that we have people from, from Italy and, uh, and Spain. Still a bit curious about the person here in the In the sea, two people from Sweden and as Mikaela will address later, a lot of quality of life also in pediatric, especially in pediatric surgery originated from the states but also from the Netherlands and Sweden, and this is also represented, I think, in the participants that we can see now. OK, you can still keep logging in, but I will go to the next slide just. To get more to the, the content, and we are curious how you are joining this webinar or as a healthcare professional, either a professional or as a parent or as a, and you can, um, if you'd like, you can fill in more um Uh, possibility. So if you're both as a parent and as a healthcare professional or a patient, um, you can, um, Check all three boxes, even if you would like. So now the 15 people that have logged in in the former did already choose. We see, I think we, we did expect that the majority of the people um are healthcare professionals, and uh it's nice to have these data, um, because later on we can in, in the evaluation and also in the Ernica conference in Madrid, we can see how this works, these, these webinars, and we're already up to 20. Uh, participants, when I go to the next question, which is about which age, age group you are interested in. And here you will find also the option to uh check multiple boxes, um, so we can see where we're focusing on, and as we later on, we'll notice, um, More than 3/5 of research in advanced pediatric surgery and quality of life have been performed in children, which is also a bit represented here, and we are up to 20 people. You can still keep logging in if you're new, um, and there's, there's more and more people coming here, just go to the menti.com on your cell phone and use the code that is presented on top of the screen. And the last one I would like to do before we switch to Mikaela is you can complete 3 words or 1 or 2 in the boxes to um give your thoughts about quality of life, and you will see when more people join, when, when more people complete. The boxes uh that the more frequently given answers will appear larger and this will, um, Give us a nice word clout. And, and in the meantime, we have 42 participants and, and more than 30 people on Mi.com. I would like to ask you to keep, to, to stay on Menti.com because later on, there will be two instances, two moments where we're going to ask you a bit more questions that go more deeply into quality of life. The funny thing is that the word function is bigger than the other words, so more people completed that word. Um, and, uh, perhaps that's due to the fact that um there's more professionals here, um, and they have uh the tendency sometimes to focus on function. Uh, but as you can see, there's also a focus on, on activities and on participation, which gives us this nice words cloud from about 19 people. Now, I'm going to interrupt, uh, my part. I will stop showing my screen because we're going to switch to uh Mikaela Dellemark for the first part of the presentation. Thank you for your responses up till now, and, um, the word is to uh Mikaela. We can't hear you, Mikaela. Please unmute yourself. I was afraid it was my problem. Now, so thank you gents for your very nice introduction and for reminding me to unmute myself. And thank you, Andre, for your men to me to Paul. Well, I would first like to announce that Ernica has established a working group for quality of life and patient reported outcomes. It is composed by different individuals with experience within this field, from different parts of Europe, and we will together provide a series of webinars during 2023, and this is our first webinar. This said, I would like to say that I'm honored to introduce this field. Let's see if this works. And I hope you will enjoy and learn more about patient reported outcomes, quality of life, and health related quality of life. While we will try to understand these concepts in more detail, I also hope that it will become clearer in the end where the field of advanced pediatric surgery stands with this regard. So let's start to identify the broadest concept of them all. The patient reported outcome concept was defined and incorporated in the US Food and Drug Administration guidance for industry, and has, since this draft was released in 2006, and the first publication was finalized in 2009, had a great impact on industry-based and healthcare research. In this document, it states that a patient reported outcome is in a 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. A patient reported outcome can include information of symptoms, signs, function, and multi-dimensional concepts like health-related quality of life. A patient reported outcome assessment is used to define endpoints that can provide direct evidence of treatment benefits on how patients feel or function. A patient reported outcome measurement, a prom is a standardized questionnaire that collects data on health outcomes directly from the patient. According to its definition, a prompt should capture aspects of importance to the patients using questions that are phrased in a wording that the patients use and recognize. Quality of life is also a broad term. This definition has its roots in the work conducted by a VHO group. The definition encompasses an individual's perception of their position in life, in the context of the culture and value system in which they live, and in relation to their goals, expectations, standards, and concerns. While this does not really tell us in detail what quality of life is, you should know that. That quality of life often incorporates components that constitute happiness and satisfaction in life. But what is then quality in a person's life? In an international work conducted by a, a working group related to BHO it was found that people worldwide differ less than expected in their basic understanding of what quality of life is. Independent of age, gender, and culture, it seems to be relevant to feel physically fit, be socially integrated, feel psychologically stable, be able to fulfill daily roles, and experience social support in a materially and economically safe environment. Health-related quality of life, on the other hand, is a more narrow concept. While it keeps the requirements of a multi, multi-dimensional concept and the subjective understanding by the individual. It more specifically relates to the individual perception of health-related states, thereby it can be the self-perceived impact of disease and treatment on functioning and well-being from a social, physical, and psychological perspective. Health related quality of life can be assessed using different levels of assessment. The generic assessment will ask people relevant questions independent of their current health status. This makes the questionnaire more general, but also a comparison of the outcomes possible between healthy people and patients. A chronic generic or symptoms specific health related quality of life assessment is a little bit more sensitive to capture issues of relevance to particular disease groups or symptom groups, still making it possible to compare outcomes between patient groups. A condition-specific health related quality of life assessment does, however, not aim to compare the outcomes with an external reference group, but instead it aims to capture issues that are relevant and important for patients living with a particular condition and clinical context. And the condition specific questionnaires are in general more sensitive to assess treatment response compared to generic questionnaires. This slide aims to show an historical view with example of trends and milestones in the development of these concepts. This overview can first help us to conclude that although Aristotleus has been described to early mention the concept quality of life, most development of these concepts have actually occurred during, during the last during the last decades. One important milestone was clearly when VHO in 1948 described the three dimensions of health in context of disease. During the next coming deceniums, the quality of life concept would would evolve, and in the late 1980s and beginning of 1990s, health-related quality of life entered clinical research, differentiating the medical and clinical. Um, concept from the more sociological and political form of quality of life. Assessment also began, the assessments also began to focus on the individual and his and her emotions and inner life, and VHO worked on the international quality of life measure, including addressing the cultural context of quality of life. During the next years, the definitions of health, health-related quality of life, patient reported outcome, and would become more sophisticated and more stringent, and it would relate not only to adults in general, but prom prompt recommendations would also be considered in relation to children and rare disease. To summarize, the concepts have in common that they help us gain insight into the patient's point of view, the assessment should measure outcomes that matter to the patient, capture the individual's subjective perception, and be evaluated for validity, reliability, and responsiveness. It is said that these concepts are sometimes used interchangeably, and they are related but not necessarily the same. And this slide aims to show us how they have commonalities but also differences. A patient reported outcome can be considered as an umbrella term for a report of the status of a patient's health condition, a quality of life as a broad multidimensional concept that implies the subjective evaluation of all aspects of life on general well-being. And health related quality of life as a specific multi-dimensional term for the individual's perception of the impact of disease and treatment on quality of life. I will now speak a little bit more about how you develop a quality of life or health related quality of life questionnaire. Thereby I need to mention that within the psychometric fields, these concepts can also be named to be Latin constructs. The construct is considered underlying or latent because it because it is not observed directly, only indirectly through responses of a set of indicator items, and it needs alization. This slide therefore aims to visualize how a set of indicators relates to different domains that build up the target concepts. The domain 1 and 2 could, for example, represent different aspects of functioning that together help to build up the target concept, health-related quality of life. If you then would like to develop a quality of life and health related quality of life questionnaire, this slide aims to show the basic procedure according to current standards of prom. Following your decision on the target concept and the population of interest, you usually need to start conducting a literature review to understand the target concept in more detail. Step 2 is to let the target concept be elicited by the population themselves using qualitative methods like interviews or focus groups. This phase will help to reveal what the concept quality of life or health-related quality of life means to the patients. Step 3. The generated information from interviews or focus groups will help to draft a list of items for a preliminary questionnaire. Step 4, the item list needs to be included in a second round of qualitative interviews and pilot testing to determine the patient's understanding of the items and the item comprehensiveness. Step 5, as this process can lead to item revision, inclusion, or exclusion, Step 6 illustrate that the measurement properties of the revised quality of life or health-related quality of life questionnaire need to be investigated. At either of these steps, a cross-cultural approach can be applied. There are different types of measurement properties that should be evaluated in relation to the aim and context of the questionnaire. With measurement properties, we mean validity, reliability, and responsiveness, as illustrated by the cosmic taxonomy of relationship of measurement properties. There are different methods, schools for assessing the measurement properties, including classical test theory, item response theory, and qualitative methods. Culture is a complex term, but it can refer to the group of people living within the same country and applying the same language, since it provides a set of beliefs, values and practices that are unique to the group's identity. and that provide meaning and purpose in life. Considering also the VHO definition of quality of life, this tells us that cross-cultural evaluation of a quality of life or health related quality of life questionnaire are necessary. Generally, the most experienced rely rely on the fact that very many quality of life or health-related quality of life questionnaires have been developed in USA or UK in English language and need field testing in various other countries and languages. It is also still debated whether a well recognized Western quality of life or health-related quality of life measure is always appropriate for use in different Eastern cultural contexts. But with regard to cross-cultural equivalence of a quality of life or health-related quality of life measurement, there are different types of equivalence that needs to be regarded. The linguistic and semantic equivalents together will tell us whether translations between items and concepts are correct, comparable, and adequate across country cultures. The conceptual equivalence, whether a given domain has similar importance across. Different country cultures. And while this will help us to establish homogeneity and quality of life or health related quality of life definitions, it does not imply that countries are participant in the countries would not differ in in the ratings of their quality of life or health related quality of life. Therefore, the same, um, measurement, um, equivalence needs to be regarded, referring to whether the same construct is measured, and there is comparability of scores across groups such as country cultures. So in summary, a patient reported outcome is an umbrella term for a report of the status of a patient's health condition, quality of life, the subjective evaluation of all aspects of life on general well-being, and health-related quality of life, the individual's perception of the impact of disease on treatment and treatment on physical, social, and psychological functioning and well-being. There are different types of assessments, including the generic and condition specific approach, and the assessment can help us gain insight into the patient's point of view and should measure outcomes that matter to the patients, capture the individual's subjective perception, be evaluated for relevant measurement properties with input from patients, and the assessments need evaluation and adaptation for international use. My two last slides will show information retrieved from a systematic literature review collecting data on proms in pediatric surgery. This study has shown that the majority of prom studies originated in the Netherlands, followed by Sweden and the United States. The authors identified a total of 85 proms. The vast majority were used in children. Most studies used a combination of generic and condition-specific prompts closely followed by those that used only generic proms. The most frequently studied conditions were Hirsprung's disease, esophageal atricia, an erectal malformation, congenital diaphragmatic hernia, while prom studies in gas gastroschisis, duodenal atricia, biliaria atricia, short bowel syndrome, and sacrococcygeal teratoma were less frequently studied. And with this, I would like to thank you all for listening, and I will leave the word to Doctor Andre Richman. Thank you. Well, thank you very much. Um, Could you make me a presenter again? I don't have the block for. I think, yup. There we go. And part of my presentation will overlap lap. Part of it will be an illustration. Or be new. Um, and I'll start up with, uh, why should we measure generic health-related quality of life. Um, Mikaela already addressed a lot of these, uh, issues, and some of you would argue, uh, that we could just ask in the consultation room what a view of a patient on his or her, her health is. And or what his life satisfaction is, or people could argue that we could see that as a correlate of their disease severity, but what we see typically in quality of life research is that they are not that highly correlated life satisfaction and disease severity, for instance, in The parents of children with cardiac issues report sometimes an even higher quality of life than the people from the generic norms. The two areas where we will use quality of life measurements for is the first to compare people with and without health issues and disabilities to see what the effect of a health issue is on life satisfaction. And the second reason to use this, especially in research, also, is to find the effect of a certain intervention, for instance, a therapy or a surgical intervention. Here you can see summed up some um the most widely used um measurements in research in pediatric surgery. On top, you see the PETSQL and the CHQ, the child health questionnaire, which has also got a, uh, infant toddler version, the ICO, and it also has got an adolescent. Adult version, which is the SF-36, which I will address later. The other ones, Kid Green, the Kits, Eurocall, etc. they all have in common that they cover mostly these three areas of quality of life. So that's physical functioning, mental or emotional functioning, and social functioning. And the DAXS 25 has got some unique aspect in that it really focuses on the emotional process, the more subjective process of satisfaction, apart from the appraisal of the level of function in relation with with health, which is a bit of a more cognitive process. And for instance, Fayed, you can see the reference on on this page, he argued that Uh, the PETQL as a really widely used instrument is in fact a measurement of health status and not in that respect, a measurement of of quality of life. And, and if you see these, these really big number of instruments you can choose from, you would wonder how to select such an instrument. Well, the physical, social, and emotional scales, they will be covered, but sometimes, especially the additional scales, and Micaela already addressed the fact that And there is this in-between level between generic and disease specific in this symptoms specific questionnaires or skills, and if you are curious about pain or or fatigue symptoms or you're more curious about participation in school and in the family, or you're more focused on mental health, you'd like to pick an instrument that has got skills representing these constructs. Not all instruments cover the full age range, so the term of your follow-up would be of influence in the selecting of of the instruments, and Of a lot of most of the instruments there will be proxy and self ratings, and typically they will correlate with each other but not really that high, so that learns us that those are in fact two perspectives from which we can look at the patient and it's life satisfaction. Micheli already addressed also that there will be local or regional norms and there will be more or less cross-cultural evaluation and also psychometric properties differ a lot between instruments. And finally, I think the studies that have already been conducted in your specific patient group and the duration to complete, which is really important for, for instance, adolescents because they just stop after a few items if they're they're fed up with your questionnaire and sometimes even the costs when there's a commercial partner involved selling in fact the instrument. Those are reasons whether or not to select an instrument. And now I would like to switch to the Mimter again to give you an idea of the effect of, let's see, of the effect of these kinds of questionnaires in adults. And now you can see here compared to 1 year ago, how would you rate your health in general now you see 5 options. You can choose one of these options. And I'd like to invite you to do this now. And in the options you already see. That it gives you the opportunity as a clinician to start a discussion about the health in the last year, and this is totally private, so don't be hesitant to complete this. There's a few people that are doing really better than they did last year. A lot of them have the same health. And this is a really nice conversation starter if you have asked people to complete this in the waiting room or at home. And now we go to a second question. I've also taken from the SF 36, um, and it is, this one is about limitations of activities during a typical day. And the question is, does your health now limit you in these activities? And there is a, a total range of, of, uh, physical symptoms, and this is only about walking several blocks. And here, You can see I use the Mentimeter option to see how healthcare professionals are doing. And parents are the ones with the pink color, and there's no patient at the moment that have added. There are obviously a few people unknown because he didn't complete the questionnaire. I joined this webinar as a professional parent or a patient. So thank you. So we can see that a lot of you are able to walk several blocks, blocks, but Um, some people are not, and, and you see that this is nice to consider at home in a private situation before you enter a consultation room. And the next question is a bit more of an intimate question. Has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors, or groups, which is really close to daily life, but also quite intimate information. So that's something I think we as professionals should realize ourselves, that we're asking something that is really something really personal for for someone. And also because if you would link your, for instance, social activities with your emotional problems, that is not nice to say that from yourself. It's not nice to talk about, but sometimes it's necessary to address this issue in the consultation room. And finally, We've got 16 respondents um at the moment, so about half of the people are, are joining me now. Um, how much of time during the past 4 weeks did you feel tired, and this is also something you need to consider when thinking about your clinical groups. Do you want the current health status something about the last 4 weeks or something about the last half year? Because that's a big difference between some instruments, the time spent, they ask people to overview. So some of the time people are Tired. I didn't, um, add the option whether it's, these are really tired professionals or really tired parents or patients, could be both, of course. OK, thank you very much. Now, you had a nice impression of the SF 36 for a part. I will continue with the last part of my presentation. Um, the, you can see that the SF 36, sometimes there's a free version in the internet that's called the RAND 36, um, that has got these areas for physical function and emotional and social, uh, uh, functioning, but also has got uh skills for, for family function and bodily pain. The SF 12 is a really short version, especially if you want to use more questionnaires, you choose a short version like that or like the EQ 5D, which is also used in A lot of research into health costs and the WHO called BRAF, the brief version which is still quite long, I think, um, has got this nice additional uh scale which also reflects the international classification of function. So in addition, in addition to, to the scales we would expect, there's also a scale about environment, so also about support in the environment. Now, something more about disease-specific instruments. Um these uh developments already started in the 80s and 90s and some newer instruments, especially the EACOL and the SCIA, we will address in the next um uh webinar because we will go into especially quality of life and esophageal atresia. You can get more ideas about how we are developing these skills and uh what uh is happening when you try to culturally validate that. But I would like to go more deep into another scale, the Hackel, the Hirschsprung disease anorectal malformation quality of life, which in fact combines two clinical groups. And already more than 20 years ago, this scale was developed in the Netherlands. You can see the predictable main scales. There's a lot of patients, which is nice, but still, the Netherlands is a really small country. Um, it has got some nice, uh, psychometric characteristics, so, um, OK to good Cronvex alpha, which is not enough to say that it's a reliable scale, that it tells you something about the internal consistency, um. And what is really important for validation that it discriminates between subgroups of patients in disease severity, and this is in fact kind of convergent validity we call that, that there is a correlation with comparable scales, and that is in this case the generic SF 36. You'd like to have a substantial correlation, but not too high, otherwise you might as well have used the SF-36. And in 2010, an Italian study reported, uh, repeated this partly, and it asked parents and adults with anorectal formation, so only part of the clinical group it was devised for. And this is what typically happens, so there's no step in between in cultural validation, but there is this, this translation, and most of the time there people also use the standards that we use for the back translation of question. which is necessary to have a good correspondence with the original instrument. But what also happened a few years later in France is that these researchers proposed an adaptation of structure in two main scales, physical and psychosocial. because some of the questions and some of the skills that the Dutch study proposed were not reacting the same, were not clustering in the same way as it was the case in France, and a few years later there was also a validation of this version to see how this new version of this questionnaire behaved in. Uh, in, in clinical groups, but a disadvantage of this way, obviously, is that um There was no cultural validation before, so every country is trying to invent the wheel by itself. Um, we do hope to prevent this in the development of the EA call, uh EA call and the SCIA. And this is the one you will see, uh, later in the next webinar as well. You can see that, uh, Mikaela and her colleagues, uh, nicely followed the steps from qualitative research towards cross cross-cultural approach and a translation. But also cognitive debriefing, which tells us that people in 15 countries have been asked to respond to the cultural content. What do you think this means for you and people in your country, to see whether the instruments are really parallel. And um this one you'll see later on as well. This is about the SCIA, which is an adult uh questionnaire for esophageal atresia. We developed that questionnaire because the SF 36 didn't capture a lot of the health problems. The gastrointestinal and the respiratory symptoms indexes did capture some of the problems, but only part of it. Which necessitates that we developed a list that was particularly useful for adults with esophageal atresia. So to summarize, I think the benefits and costs for patients are that And for patients and for parents effected is that you bring daily life to the hospital that you can ameliorate care by making people contemplate about important issues at home, and we can use that as a starting point in our consultation room. Also in research we can use this to compare different clinical groups or results of interventions. But there are some costs. Some of the patients I already told you adolescents are not fond of questionnaires, but some of the patients are really fed up with questionnaires, and some people are really critical, and they state that they think, in fact, questions or questionnaires can't capture totally what they are living through at home. And for research purposes, it is nice to have this um in, in a large group in, in a longitudinal follow-up, for instance, but that takes you a lot of time, firstly, to interpret what we see, but also in motivating people to um Uh, fill in these, these questionnaires, and, and, uh, sometimes you don't see the effect of the questionnaire, if, especially if the professional in the consultation room doesn't address the questionnaire, um, and you'll only see the effect of completing the questionnaire later on in, in research, which most patients won't read. So, um, to conclude, I will skip towards the menti meter, uh, but first, I will tell you that the next webinar will be about health-related quality of life in children and adults with esophageal atrisia. We will go in, we'll go more in depth in this area. Um, we do, uh, we would like also, um, but those will be different presenters, uh, address qualitative studies, mental health care needs, uh, one specific part of the esophageal atresia group, trauma and the effects of trauma on, uh, on the patients in pediatric surgery, and we would like to ask you also to add your ideas to this. And for that, I will skip to Mtimeter again. And first, I would like to ask you, did this webinar add any value to your professional work ranging in here, you can only complete one. Um, can only Check one box. So It would be nice to see what your opinion on this is. I will. Wait until about 20 people or so have added their opinion about it. You're being really kind to us now. If you don't have to be, of course, because you're totally anonymous, so we can't see who's reacting, how. OK. So 19 of the 38, which is half of the population, have already answered. And the last question I'd like to ask you, and that is to type, uh, but later on you can also ask verbally when you're muted by, by Jens, um, what you missed in our presentation, and also we would like to hear your ideas for future associated topics in Advanced pediatric surgery within this Ernica quality of life, um, Webinars We didn't practice this one. There are, there they are. It always takes people, obviously some time to uh. To type To add South America represent us. I don't know how, how that, that works in Ernica being it's a European reference network, but for me, it would be nice contribution to do this kind of information, to share this kind of information in a more, in a greater scale. Actual infographics from patients' well-being. Well, that will be the case, I think, in, in the next, uh, the next presentation because we can go more in depth uh how people experience their uh quality of life. Thank you. You're welcome. And prompts for patients with intellectual disability, that's a, that's a good idea as well. The World Health Organization did devise an instrument especially suited for persons with a mild intellectual disability. Um, but that is interesting as well. Well, thank you very much for your reactions. We still got time for questions. I give the word back to Jens, and I will stop sharing my screen. Oh, I can scroll. This is nice. Compared with data from east and other regions relevant for culturally diverse communities in the West, yes, I think that would be good also for cultural validation. Yes, well, thank you very much for your attendance and for your, for your reactions. Um, I'll give the word back to Jens. Yes, let me first of all, thank you both for your excellent presentations, um, and also for your effort and time you invested in, in, uh, in preparing your, uh, slides and also the menttimeter and everything. That was, um, I think a really, really good kickoff for series of webinars on quality of life. Um, it was, it had two functions for me in, in the first place, I've, I've learned a lot. Because I've always, um, only the view of a surgeon, um, and, and you really, it, for me, it's really benefit to get your view and, and to get your expertise because, um, I, for the future, I, I have several questions, um, which come from the surgical background and it's only possible to answer or to, to get an answer on them, um, working together with you guys, so. Thank you again for your efforts. Thank you, Andre for your idea with the mantimeter. I think that was a, a really nice kickoff for a short discussion. We have around 10 minutes time for that. And before, before I forget that, thank you also Carlos and Olivia for um making this happen and um to, to get this started um because we're um We, we try to be uh technically um good, but you, you help us a lot um to, to um get this from the ground, so, um. Discussions open for the floor, um, so please use, uh, the questions tool in, in the GoToWebinars platform. Um, Can't see any questions. Now, um, maybe it will be nice, Andre, if you, um, go back to your mantimeter and, um, I think people took the opportunity to use mantimeter to um give their implications on the, um, on your talks. We haven't lost many, we haven't lost many, um, but we're still 33 people, um, on the floor. So, um, it would be nice, I think, to, to wrap this up. Yes, and it already gives us a few questions. How to include family, parents, and siblings? That is a nice question. I already said that in the proxy rating, we ask parents to say something about the health of their of their children, and sometimes we especially ask if there are two parents for them both to complete this questionnaire. And in some clinics, people also ask about the quality of life of the carers themselves. For instance, the carer call is a very short questionnaire of 5 questions addressing the health of the parents themselves. And the second remark is why why all questionnaires are so negatively focused? Yes, that's because they're problem focused. So you're right. About that, it's not all about health. It's also about not having health and perhaps this is an interesting opportunity to consider whether the insights of positive psychology, for instance, could contribute to more positively stated questionnaires in in quality of life. But then again, people are in the hospital most of the time for a certain problem, so it would be strange if we wouldn't address this problem, of course. Perhaps Micaela, you have something to say about this. About, about what, Andre? About the negative tone of some questionnaires. Well, it, it is interesting because there is, of course, also resources and Uh, adaptational skills among very many patients. But, um, my experience is that when you, you ask these things, they, um, they, um, they, the items, they don't behave the same way as The quality of life items. So it becomes very difficult to, to, to, to formulate scales sometimes. But it's, it's interesting. I think it's important to include these questions as well, of course. Yeah, I think so. It's a, it's a challenge for us, in fact, to, to look into that. There are more and more questionnaires having also, for instance, behavioral skills with a scale for prosocial behavior, so they do exist and it can be part of functioning, of course. One of the participants said a bit too fast, is it possible to get your presentation? I think we can answer that very easily and By saying that, uh, this is recorded so you can list this afterwards and I don't know whether there's a link towards the PDF of the uh of the presentations. Is that, will that be the case, Jens or Carlos? Well, thank you, Olivia already answered, uh, to that question in the chat, um, and it will be possible to, um, get the slides certainly and also to get the full, um, presentation on video that has been recorded, certainly. Um, just another remark, uh, Carlos just made, I just wrote it in the chat, um, everybody may also raise their hand, there's a function on the mentee, on the, on the GoTo Webinar, um, and I might unmute you for posing a question, so whoever prefers to do that is invited to raise their hands. That seems not to be the case at present. It might be interesting to um if, if um anyone wants to put that in the chat, we can also read that later on. Um, I think it's important, um, to promote this series of webinars when you give your input on what do you want to hear about, um, because we don't know exactly what background you have, um, so whoever does have, um, any ideas on, on specific topics, um, or just in case you haven't got everything, um. Just uh give us a shout and we, we might integrate that in, in our program, as you've seen in Andre's presentation, it's not quite ready yet for the, for the whole year, but we've planned um for really regular, Webinars. Yes, would it be, there is this question about how to include patients with cognitive disability. I think that's a nice one to address because some questionnaires did really put an effort into doing that. There has been some research about the reliability and reproducibility of the opinion of children on their own health, and Um, I think some really large reviews learned us that the age, up until the age of 8, you could come up with a really large diversity in answers, and asking the same tomorrow would give you a totally different image. So most of the questionnaires start from 8. Some of them like the PETQL. Ask children from the age of 5 years also to give their opinion about their health, and I think if you as a clinician think that could be useful in this particular child, I think you should do it. But that also tells you that not all people with cognitive disability could answer these questions reliably. But some really put an effort into this. For instance, the DAX 25 gives us not the five verbal. Options, but 5 smileys with one in between, which is kind of neutral, and 2, a little bit sad and 2 more and more happy. So that is a bit more easy to complete for also people with problems in language processing or people that originate from another mother language. Um, I think those are nice options for people also with, uh, intellectual disabilities. Perhaps you would like to add something to that, uh, Mikaela. No, but I think it's, it's important to consider that there may be particular considerations to the understanding of both the response scale, the recall period, and, and the items. And it's interesting to think of include In this population to carefully during a developmental phase. So I don't think within pediatric surgery that this is so well researched yet, but there are experience from from other pediatric populations. Um, what I also think is important is that I can see that there are some, um, suggestion about, um, um, the family perspective and also the cross-cultural perspective. Um. And um this is also something I find very interesting. With regard to the cultural evaluation, I think it's sometimes quite difficult with advanced pediatric surgery because the populations are so rare. So when, once you collect them in one country, it may not be the same as study from a clinic study population from a clinical point of view. So it's also very important to consider what is culture and what is the clinical characteristics and other factors that may influence the perception of the quality of life questionnaires. Mm Thanks Mikaela. There's one more uh comment um from the chat and I'll just read it out loud. Uh, Emma, who's very active, um, is just commenting, it would be nice to see different ways and options on how to get a greater impact. Of quality of life. Um, I'm, I don't understand the question completely, but, um, Emma, I just didn't want to ignore that. I think we take that, um, we, we need to go back into our menttimeter and also Uh, into the chat, um, I'm sure we can, uh, we can find a way to, um, address your point, Emma, if, um, maybe it will be possible to write an email as well as a, as a reply to, um, the presentation, um, you, you will get. Um. We really plan to be on time and we are on time, actually. Thank you, Andre and Michaela for um Being so active, um, and I forgot to, uh, tell you about my second point, um, previously, uh, which I, I really, um, think we, we reached another aim today, um, not only answering specific questions, but also I think this webinar really, uh, worked as a teaser for our ongoing activity activities in that. and I hope um you see it in the same way I do. Um, I really like to take the opportunity again to thank everybody to um make that happen, also to thank everybody who participated today, um, and we're looking forward to seeing you again on this Ernica channel. um, have a good afternoon and um. I leave the last words, words to the, to the two speakers, and I say bye bye and see you again. Bye-bye and thank you for participating. Yeah, have a nice evening and thank you for listening and looking, and you can perhaps see the recording when it went a bit too fast, and I'd love to see you next time in the coming up uh webinar after this.