Quality of life in relation to eating in children and adults born with esophageal atresia - ERNICA Research Collaboration

So everybody's in. I hope uh we'll have more people. Hi, everybody. Uh, welcome to our second webinar on quality of life. Um, on behalf of uh Ernica and the Quality of Life Group of Ernica. I welcome you, um, wherever you are to join our, um, next, uh, version of our Series of webinars. Uh, we have again, our topic today is the um quality of life with a special focus on eating and you've seen um the title and I'm very curious and also I'm looking very much forward to um 3 talks today which um. We'll start with Ankevied Mogolich, who is the patient representative in our quality of life group, but she's also the president of the esophageal atresia Global Support Group ED. She is a member and uh uh um treasurer of, uh, the German, um, uh, um, patient aid organization for esophageal atresia, and she is the patient representative in Ernica. Um, Ake, who I know for many, many years, is very active in all those groups, and the reason for it is that she is the mother of a son who was born in 1999 with a long gap EA, and that makes her an, as she says, expert by experience on the topic, um. So we're very much looking forward to your introduction. Second speaker will be Mikaela Del Mark Bloom, who is an associate professor and a doctor of philosophy in Stockholm, uh, associated with Stockholm, but, um, originally from Gothenburg. I've been working with Mikaela also for many, many years on quality of life and she's the Um, main driving force of the EA call questionnaires which you all know and um which we developed together. Um, and as a third speaker is uh Doctor Andre Riedmann who is a neuropsychologist in um Erasmus Medical Center in uh In, uh, Rotterdam and he is, um, also a very, um, he's very experienced in, um, quality of life research, um, and also dedicated to, um, isopresia and he's gonna talk about the, um, adult, uh, quality of life in adult survivors of EA. So, um, this will be. I'm sure will be an interesting webinar which will be moderated by myself. I'm, my name is Jens Stingermann. I'm a pediatric surgeon, um, with a focus on esophageal atresia here in Hanover Medical School. Um, and we start with Ake, um, who gives us the, oh no, we don't start with Anchor, we start with Andrea. I'm sorry for that, um, who, um, is gonna give us a, a short introduction, um, using Mantimeter, which some of you may know. Um, which is a really nice tool, um, to, to, um, get a focus on what we'll, we will be talking about and also to find out who you are and where you're coming from, I suppose. So thank you for being here and, um, I pass it on to Andre. Well, thank you very much. I will first, uh, start with, uh, opening our uh metimeter. Um, And I thought I had it as the first slide, but here it is. Um, can you see this screen with the world map on it? Anybody? Yes. Oh, good. So when I start presenting this, you can see on the top of the screen, uh, you can log in with your cell phone, which is the easiest way, so you don't need to interfere with our presentation. So you looked at Menti.com, uh, the, the, the app itself, it's called Mentiter, but Menti.com is the place where you can. Insert this code, which is on top of the screen, which is 627-083-33 and uh when you're logged in, you will also see this world map appearing in your screen of your, of your uh of your phone, and you'll be able to point to the country that you're in at the moment. Um, so that's the aim of this just to get acquainted with you first. Uh, we'll go further with that in the, on the further slides, but this one also counts as a way to see how many people are participating using their cell phone. As you can see on the downright part of the screen, there's this little picture with a one, which means that only one person has already logged in. That's probably Mikaele because we, we tried this out an hour ago and there's again a person living. In the Indian Ocean, um, but obviously there are places to live in on land as well. Um, and there's already 6 people participating, and I think, um, in the meantime, there are more people joining this webinar, so I hope you will, uh, join us. There's a lot of people, I think they will be all from. Or Germany, either Germany or also the Netherlands or Belgium. And also for the people that step in this webinar, you can see on the top of the screen menti.com and you need to um put that in your browser of your cell phone and you can use this code to enter this presentation, and we will use this further on in other presentations as well and also to evaluate at, at the end, you can give some comments in the further uh. Uh, screens and since we're. Already past 11, uh, 13 people. Jens, can you tell me how many participants we have at the moment? It's 18 at the moment. 18. OK, so I'm, I'm waiting till we have 3 quarters, sorry, 3 quarters of her um. People are joining us, you can look at the top of your screen where you can see Menti.com, you need to put that in your web browser of your cell phone. And use this code on top of the screen so you can. Um, Join us and I think we'll continue now because already 13 people have joined the mentee uh poll, and the next slide will give you only one option also if you have more than one. Ways you're looking at this, this webinar, you may be here as a healthcare professional, then you will be provided with a, a blue dot, and also the people that are participating and presenting can, can add themselves. Um, there are parents also here, they're mainly here as parents, um, not yet any, any patients. Um, and we're almost also, again, at the 13 people that have joined us. Oh, that's good. We have 1 extra person again now. So, when you just recently joined us, please add Mi.com in your browser and then enter the code so you can join us in this uh start of the, the webinar on quality of life uh and eating. So I will conclude that we have 16 people which are mainly healthcare professionals. Uh, we have 2 parents, possibly of patients. We don't know that, of course, uh, but that may be, uh, that may be the case. Anka might may be included here. Um, but as you can see, it's, it's for the rest, it's totally, um, uh, anonymous, so we won't use this, this data. We can use it for ourselves, but we won't, um, uh, distribute this. And for The next question, which age group are you interested in? That's also because we divided between 3 speakers, and they're all 3 about a different subject, but also about different age groups. And here you can add more than one option. So if you have more groups you're interested in, you can add to that and. I can see everybody understands this because suddenly a lot of dots are flying around. So I will go to the next slide when 15 people again have added their votes to this. Um, as you have noticed, you need to, after giving your response, you need to submit your answer. So there's 2 actions necessary for every answer. Um, and we have, uh, submitted, I, everybody can see this on the screen. And in the, the next, uh, slide, and, and you see nicely spread, um, a lot of people are interested in both children and adolescents, and, and a few of them also in adults, um, which doesn't really give a guide us as to which group to focus on because we want, don't want to disappoint this group of 7 people, of course. Nice to see also the people that just joined, they're already joining the mentee. Uh, and now this is an open one. You can enter three words, um, after each other, you need to submit them after that, uh, to. Say what comes to mind when you think about the subject of this webinar which is eating as a person with esophageal atresia. This is the main, the main part, it's not the only, but um what are your associations when you think about eating as a person with esophageal atresia? And the moment that you have entered a word, we will see this in a nice word cloud appearing in our screen. There's only one Already 12 persons that that added this, and there's more and more coming and the more people respond with a certain word, the bigger the word will be. So everybody already uh chose a different word because all words are of the same size. There's dress in the middle of the screen. The color doesn't say anything, um, and it's informative for us as well. Uh, breathing, dysphagia, everyday life, that's all. Quite familiar for us to see this as More people responded with bolus and swallowing. Because that is one of the main issues people deal with. That's what we Also found in both in research and in clinical practice. Yeah. Probably also a lot of people learned about the word bolus firstly uh associated with, with uh. Um, issues like esophageal atresia. So there's 16 people, this is a really nice word, cloud, which gives a large, really big diversity in uh, in associations. Um, more technical words as well, such as stricture and dysphagia, which tells us that there's, um, a lot of professionals also joining us. Well, thank you very much for this, uh, response. We can, uh, if you would like, uh, uh, show this, uh, later on, but I will firstly break off this. You can keep on, keep locked in when I break off this presentation. Um. Because I will keep it active here, but I will stop sharing, but we'll continue later on um in my presentation and after the last presentation to see what you found and, and uh uh also uh to see the issues that that adults with esophageal atresia deal with. So we're already with 18 persons joining this Micom, but I will stop sharing and I'll give back the words to Anchor. Who's the first person to really present about this? The floor is yours. Thank you very much. Um, and thank you, Jens for the nice presentation uh for my person and thank you, Miel Ela and Andre, that I can, I have been asked. So what we did today or what the idea was, uh, some of you might know the patient journey, which is a valid view on um all patients or on a broader view on patients with esophaal attricia. But today I will show you the way of my now 24 year old son born in '99 with a type A or a forked type 2. And I think the most important message about quality of life, no matter whether concerning eating or other topics, is it is not a stable thing. It develops. So in our case, my son was 4 months at hospital, which was a low quality of life for his parents and his siblings, but he had a quite nice life, so he went well. He had the sham feeding. He had his bolus in his stomach, so he went well. He was a pleasant, nice baby, and he It was really very difficult for us to give him to the surgical theater because you had the impression it's everything is fine, so he finally got got a gastric pull up and then for him the journey became a bit less pleasant because he couldn't get rid of the ventilation for nearly 3 weeks, so it was the question whether he needs a gastrostroma. Finally he got rid of the tube and we had our first release, so we thought everything is done until we started to feed more solid food and then the things started becoming really unpleasant for him because he turned blue not only one time. So this was a difficult time for the whole family, but especially for him because he wanted to eat. He was hungry, but the moment he swallowed he became blue. So we solved this problem as well, and so he became a very pleasant child for the kindergarten, but coming to school, his life became a bit more difficult. And so I will not tell you the whole journey, just that you see how it is meant with all those plus and minus, which should show you that the quality of life of your patients or our children. Yeah, can I ask you to share your screen because we're not seeing it at the moment. I did. Um, I'm sorry, I, I think a lot of people don't wonder what I'm talking about. I did, I did share and especially about the pluses and minuses. We're curious. Oh, maybe I, maybe I was too quick. Sorry, and, don't, don't you see my, we checked it. You see my presentation, no. I can share your slides if you'd like to. No, no, I, we checked it and I don't know why. Hang on, I will try it again. Sorry, why didn't you interrupt me immediately? It was, it was really interesting listening to you even without the slides. So everybody was happy unless you see it, you started speaking of pluses and minuses, and then, OK. OK, so there we are. This is the patient journey, and those who have seen it already with all the pictures, sorry about this, and I think the important message of this picture is it changes. It changes all the time. And it is difficult looking back to know when my child has not such a high quality and when when was it myself, but I think whenever he couldn't eat, no matter for which reason this was difficult for him. But as well, when he changed his daily routine, so starting kindergarten, starting school, changing from the primary school to a more to a school where he had to eat outside of the house became difficult for him. So this was sometimes a really up and down. Today I'm allowed to say I ask him that we are at the 2 plus. He feels excellent. He doesn't feel he has any restriction due to his illtricia. So I had a question from Andre what knowledge or insights concerning eating really helped my son and myself along all this way? And I highlighted it in red that you can see I will not go through the whole way again. I think core was the shame feeding, so he had no problems at all after the gastric pull up to understand how he should swallow. So this was really a core issue. And then the next thing was, I think that we had a neurologist who was very understandable in those times when he had his bruise or Altez, who knows, to say leave the solid food, stay to the milk, no problem with this in the 1st 12 months. So this gave us the The convincing knowledge that we are OK giving the milk and not be pushing him through something he's not prepared for with his whole constitution. Then the next step, which is really important, are either siblings or other peer children that the children see how eating works. Then later it was the pulmonological expert who was really important because eating without breathing is a real issue, and here sport later in his life was a very important topic. And so in the end I would say that he today can say I'm fine, my life is fine. It's also up to him because he started at a certain point. To develop his own trial and error, what works, what doesn't work. For example, in a football match, what can I eat between first half and second half that I don't get dumping? It was him who developed a solution because the nutritionists in hospital, they only had tips which didn't really work. So take a home message for Micaela and Andre and everybody else. You need initially really a neonatal expert hospital who is able to do, for example, sham feeding. It's more than surgery. Then you need a sufficient training for the parents before the first discharge, especially the resuscitation. And then you need experts around those children for breathing and eating, and eating is more than just swallowing, it's the growing as well. This is not always easy. And then in the next step in transition, you need the early training of the children and adolescents because they have to become expert of their own body and that sport is better than therapy was always our impression because he liked doing sport. He hates the therapy. And then what we really need now is expert centers for adults because with his last pneumonia, it was his pediatric pulmonlogist who helped us. There was no adult support or no adult doctor support. So that was it and sorry for the technical issue. No problem, Uncle. We were really, um, we were, I, I guess we were all fascinated by you, by hearing you talk, so the, the slides made it even better. So thanks for your slides, thanks for your, um, journey, your very personal and individual journey, and, and your son's journey, of course. Thanks for sharing that and um. Yeah, we stay, age-wise, we stay in line um and go on with um eating related uh problems and their impact on quality of life um with Mikaela and Mark Bloom. Thanks for your presentation, Mikaela. Thank you, gents, for your introduction and Ake and Andre for a great start of this webinar, and thank you everyone for participating in this webinar. I hope you will enjoy my presentation. The aim of my presentation is to describe experiences of assessing health-related quality of life in relation to eating in children born with esophageal atricia by using a condition-specific approach, and I hope these initial studies will aid the discussion of its implications for Future research and practice. And I've divided the presentation into three main sections which regard the focus groups where we will see experiences described by children and their parents, clinical factors associated with health-related quality of life in relation to eating, and then the prevalence and role of coping in these situations. The condition specific approach used in this presentation rely on the development and application of the EEA qual questionnaires, which most of you know are condition-specific health related quality of life questionnaires for children born with esophageal atricia originally developed in Sweden and Germany, and this presentation will then reveal findings from the focus groups and application of the EAual questionnaires in new studies after its finalization. So the focus group, the focus group took the starting point that health-related quality of life is a multidimensional concept and refers to the self-perceived impact of disease and treatment on functioning and well-being. And by using this approach, what, what did we then find with regard to the children's eating? We found the physical, social, and psychological health-related quality of life experiences in relation to the children's eating, which, as viewed on this slide, could be divided into eight different main domains the experience as regarded the school cafeteria, children's parties, food limitation, food restriction, and other food issues, vomiting, fluid intake, nutritional intake, the gastrostomy, and choking. This slide also shows the 8 different main domains together with a matching quote from one of the focus group participants to illustrate how the children and or their parents express themselves regarding these experiences, and I will now pick up a few examples and read them for you. An 8-year-old girl described her food limitation and food restriction and said, I cannot eat apples or meat without them getting stuck in my throat. A 15-year-old boy told us about his school cafeteria experiences that sometimes I get lonely during lunch break because my friends eat much faster than I do. A mother of an eight year old girl described her daughter's nutritional intake experiences and said that she is very stressed during mealtimes. And an 11-year-old girl described her vomiting experiences and told us that, I just want to go home because it feels so tough after I have vomited in the school, and as you can see, there are psychological, physical, and social aspects of eating. And all reported reported focus group experiences by children and parents helped us form the development of the EAal questionnaires, two age-specific versions, and each of them include a specific domain to assess health-related quality of life in relation to eating. And this, this is how the items look in English language, as you can see, there are 7 items for children aged 2 to 7 and 8 items for children aged 8 to 18. These items are answered using a 5 point liquid scale from never to always and a 4 week recall period. These items have also been linguistically validated in 16 languages, which suggests or supports that the content and the concept of these items are transferable to many new country settings. Then we come to the second part of this presentation regarding the clinical factors associated with health-related quality of life and eating. I will present findings from a Swedish German study which applied the EAal questionnaires and statistically evaluated factors that were associated with health-related quality of life in relation to eating, and this slide shows the impact of digestive and respiratory symptoms on health-related quality of life in relation to eating in children aged 2 to 7 and 8 to 17 years. included in a regression analysis, and it shows that the, the, the more digestive symptoms, the more different digestive symptoms present in the child, the lower health related quality of life in relation to eating. In fact, the number of different digestive symptoms present in the child explained a substantial proportion in the variation of eating scores, as you can see underlined by the red lines, it regarded 43 to 58%. In comparison, the number of different respiratory symptoms included in the regression analysis resulted in, not the, not in the same way. Only 7 to 8% was found to explain the variation in the eating scores, and in children aged 2 to 7, it did not reach the significant level. We also tried to identify surgical and congenital independent predictors of worse health-related quality of life in relation to eating and found that in children aged 2 to 7 it was a gastrostomy insertion and in children aged 8 to 17 it was no primary anastomosis in child report and prematurity together with esophageal dilatation in parent report. In a Swedish study, we compared health-related quality of life in relation to eating between children with and without delayed reconstruction of EA, but did not find a significant difference with these outcomes between the groups. It should be noted that despite a nationwide recruitment, it's still regarded as small and heterogeneous group of patients. However, we found that this subgroup of patients required nutritional intake support in school in 60% of the cases, and this was significantly higher compared to children with primary anastomosis. Then the third part of my presentation which regards the prevalence and use of coping and its relationship to health-related quality of life and eating. We undertook a focus group study with 30 families of children aged 2 to 17 years, and it aimed to identify different types of coping strategies used by children and adolescents born with oesophageal atricia, but also the situations where they used coping, and we identified 9 different situational contexts where coping was used. And most frequently it was used and described in nutritional intake situations. This helped us form the development of a coping questionnaire to assess coping in nutritional intake situations. In turn, this helped us to determine the prevalence and role of coping in nutritional intake situations, and this questionnaire was completed by 73 new families. Dealing with coping studies, I must confess, is quite complex and theoretical, and I will not go into detail, each detail on this slide, but still, I would like to show you that we identified 9 different types of coping strategies, as you can see in the left column of this table. And each coping strategy was carefully defined according to children and parents' descriptions and coping theory. So for as an example, avoidance was defined as behavior and thoughts to avoid situations and conceal problems and to hide the difficult emotions caused by oesophageal atricia. And all of these coping strategies were also identified to be used in nutritional intake situations and helped us form the development of 9 different items, as you can see again, for example, avoidance then meant that the child would avoid food or food situations that caused them problems. And the questionnaire contained these 9 items together with an open questions about the use of coping in nutritional intake situations. This helped us to determine that 77% of children with EEA use coping in nutritional intake situations, and among these children they used a mean of 6 different coping strategies indicating a large coping repertoire. This slide then shows the prevalence of using the different coping strategies according to different child age groups 2 to 78 to 12, and 13 to 17. And as you can see, many of the coping strategies had a high prevalence, between 80% and 100%, but there were also lower levels of coping strategies like emotional expression and distancing. We found that acceptance of nutritional intake problems became more frequent with the higher child age, whereas the need for seeking social support in these situations decreased correspondingly. But what about then the relationship between coping and health related quality of life and eating? Well, most consistently we found that an active coping strategy with attempts to do as peers in eating situations to imitate peers was associated with better health-related quality of life in relation to eating. We also identified a correlation cluster between 3 different coping strategies, meaning that the child was using one of these coping strategies were most likely also to use the other ones, and this regarded avoidance of nutritional intake situations. Expression fear or worry about them or distancing from eating or food, and sometimes these are called disengagement strategies. These disengagement strategies were associated with worse health related quality of life in relation to eating, most often independent of disease severity. So in conclusion, using a condition-specific approach suggests that health-related quality of life in relation to eating in children born with oesophageal atricia cross-culturally reflects a concept of physical, social, and psychological aspects. Is related to a complex interplay of contributing congenital surgical, GI symptomatologic and coping related factors. These outcomes may be positively affected by monitoring and treating digestive morbidity and encouraging children to take an active approach to their eating problems rather than using disengagement coping. And this shows the need for a multidisciplinary approach to optimize the outcomes. These are only initial studies within the field, so future research is really warranted, and I thank you all for listening and for participating in this webinar. I'll be happy to answer any comments and questions at the end of the presentation, but also to listen and learn from your experiences. So thank you. I will now pass on the presentation to Andre. Thank you very much, Mikaela, with this. Really, uh, everything was really flashing by in this enormous, uh, speed with loads of information and, and I was really doubting whether we did right to make you start because in your, uh, path of research coming from, uh, the qualitative moving towards this nice questionnaire you devised, uh, and towards the really practical implication as to coping, um. I think we're only halfway and and perhaps even even less than that with uh the part that I'd like to uh to share with you and that is about uh quality of life and eating in um in mainly adults with uh esophageal atresia. I already mentioned that in the last uh webinar um and uh this will be about the starting points we had in uh I'm trying to start, yeah. Do you see the full screen now? Is that, uh, OK. Um. Can you, Andre, can you change to, to the normal presentation mode? We see the presenters presenter mode. I'll, I'll I think it's easier if I can do that. That way, no. Nope. Because I need to move the presentation to the other side first. Yeah. And perhaps does this work for you? No. Weird. You can do it in Teams up left there you can display settings. You can change to presentation in Teams, not in the PowerPoint. Yes, I'm in Teams now, but where can I find that option? Up left in apps. Yes, yeah. And then I can, no, but on your, on your slide you have display, and then you can change to the. Yeah, display settings. On the top, no, up, up, up at the top, display settings, nice duplicates and then yep, there it is. This is better? Thank you. It's much better, thank you. Yeah, as I said, we're in fact at the start of a of a journey that Mikael and her team already made for for children for a far longer time, and I will, um, uh, tell you how we started and how we went on, especially in. Devising an uh a specific age rela related health related quality of life instrument for adults with esophageal uh atresia and and we've found in the beginning um uh from our our own experiences with multidisciplinary long term follow up uh uh that uh there's quite some differences between children and and adults and we were mainly interested in, in adults, um. And, and we didn't find, find that many articles about this subject. Um, and when we did, uh, we found uh instrument publications using more generic instruments such as the SF-36, which is a short version of a generic instrument. But here they didn't find any health related quality of life issues at all, uh, so we turned to two more specific questionnaires which only covered part of the problems, obviously one. Uh, about the gastrointestinal part and one about the respiratory issues and they did find some issues, but they didn't cover the full story that we found and how did we find this story? Well, we started with focus groups with both adults and their family members, meaning their children both and their partners, and We were really surprised to find that when we offered people to have this evening with all different kinds of talks from our team members that we came up with more than 200 people visiting our hospital and from this group we took uh focus groups and we had discussions about the issues that people meet and we published this qualitative study which you can see at the bottom of the screen. And it gave us a first idea of items that are really interesting for adults with esophageal atresia, but obviously a list of 144 items is not really practical, so we went on analyzing with a small pilot of 42 adults. To identify strong and poor items that also means that um they need to show some uh distribution. So not only one or two persons having problems with this particular issue, uh, but not also not the extreme answer in in the total group, uh, so you need to to um pick only those items that give you this nice distribution and uh we uh approached 4 hospitals in the Netherlands for this, uh. Uh, the version that came out of this, which was a version with 36 items, which is far more practical, and 447 people answered this, uh, questionnaire and, and we ended up with 33 items, um, and, and to show you what this, um, uh, gave us, oops. I will later on, I will later on present you what what skills we ended up, but firstly, to show you what the more practical issues were, I have some quotes of patients um during these focus groups meetings. For instance, a patient of a person of 54 years old said going to a restaurant is really different, different for me than for others. I have to be careful with my, my choices, and he meant choices of restaurants, but also choices of types of food. And a younger person said, with my first girlfriend, I pretended to have already eaten at home. I didn't want to offend her parents by not being able to eat their food. And the same person also said one time there wasn't enough time to eat. So after that I started vomiting, and since then they give me the time I need, and that. Having the time you really need for that, that seemed to be a really critical issue. So all these kinds of uh issues, they, they end up being questions in, in a questionnaire, um. And also making it possible for us to ask people both what their somatic problems are, such as dysphagia, but also their practical problems such as eating solid food, but really having to drink water and sometimes even a lot of. Water with every meal and then we um come to the coping strategies that that Mikaela already um uh discovered in in children. I think that a lot of them will be similar in adults, but we really need to bring this research further to find uh the differences that um that there are between coping of children and coping of adults. What we ended up with is the SCIA, which is the first condition specific instrument measuring health-related quality of life, and you can all read in the uh the papers at the bottom of the screen that the feasibility, the reliability, and the validity is really good, and that it covers the ICF framework, which is the International classification of function. Um, linking health conditions with these more practical areas of body functions, activity, and participation, and also taking into account of their environmental and personal factors. And when you cover that total domain, um, you end up with 11 domains in esophageal atresia, and I will only show you a bit about the factor with concerning eating and drinking. At this moment we are um looking for different countries who want to participate in our uh research to translate the SKA to their language but also to culturally validate this this questionnaire to see whether uh perhaps they're really um kind of Dutch items or kind of European items in it whether they're culturally too biased and. Perhaps we need to change some of these items, but first we need this translation. We already have contacts with 8 countries in Europe and and we hope to bring this towards a more wider spread of this instrument to. Enable people with esophageal atresia to express what uh esophageal atresia is doing to these really practical domains and to illustrate that I will show you the questions about eating and drinking which are uh which are for. Which are 7 questions, but I won't read them for you. I will switch to uh mantimeter again, so I stopped sharing this one and I will start sharing the mantimeter presentation again because within that presentation you will find the 1st 3 question. Questions of this um. Questionnaire. Can you see this one? And I will. Yes. Yeah. And is this also on the screen of your um. Oops, of your cell phone, yes, it is. So 3 people already did this and When we would have had um. More parents and patients that would also be more pink and red in this illustration, and as you saw at the beginning, um, that. The majority of listeners to this webinar are healthcare professionals, so, um, you will see a distribution towards the left, and that's what we'll typically see with people without EA and there's one person unknown, and perhaps that's the person that enters this presentation at a later time. It would otherwise enable me to, um, oops. Otherwise it would enable us to see a difference between these two. Between these two groups. So there's one parent perhaps answering for her or himself, uh, but also you could answer that for the child that you're watching this presentation for. So this is one really simple question whether or not people enjoy eating. That could be a starting point of the conservation, the conversation between the clinician and uh and the patient. What we typically do with quality of life questionnaires, there is a display of the items with a normative value behind that, so you can see whether or not a person is differing from the general norm or whether it's differing from other people with oesophageal atresia. Which makes it easier for you as a clinician to, to ask whether somebody wants to tell you more about this, whether or not you enjoy eating. The second question is. Um, And I will hide the results now first, um, and can you see the second question? Yes, 4 people are very good. So when. Just to avoid that people see each other's answers, I've hidden the results now, but when there are more than 10 people that entered there. Um Answer Like now. You can see that um. Generally, the large part of this group is varying between a little faster and a little slower, and this is typically what we would like to see also within a clinical group. This is what I meant with a good distribution of answers, because if the answers would only be to the right or only be to the left, that would be really a bad item, not discriminating at all, um, and this is a really nice distribution. We will see this distribution within people with esophageal atresia as well. Um, but I think that the, um, proportion of people, um. Being in the middle would be bigger with people without esophago trees, and here you can see it's a totally different item from the first one, Because that's then it's about whether or not you really like eating, and here it's how you relate to other people and how you see people eat faster or slower than you. And that could also be uh be an issue that would give a color on the screen for the clinician to uh signal it for discussion. In the consultation room, and the last question, well, and, and the alternative is that you need to pick. So here ranging from constantly and towards not at all this spread is uh and these alternatives are with the same wording as they are um in, in the official questionnaire. And um As I said, we only have an English and a Dutch translation, and we are aiming towards more translations to see how this is spread. And here this is typically an item where I would expect when it's about whether you're able to eat everything you'd like uh in regards to food texture um in the, in the normal population, the group of people without esophatricia, we'd like to see the. Uh, constantly or most of the time answers and the parents answering for their children, but also the patients answering themselves, we would expect more the Some of the time, not often and not at all, again signaling that this could be an issue to discuss in your consultation room. I will be coming back with this presentation at at the end, but first I will give the word back to Jens for questions, remarks, discussions from uh from the audience. Thanks, Andre. Can I first of all say, um, many thanks to all three speakers. I think um this made a comprehensive overview of um the, the significance of eating for patients with EA and that to my opinion makes it um important to. Healthcare professionals, um, whatever they, they are, um, surgeons, gastroenterologists, but also nurses and, um, um, everybody else who's involved in, uh, therapy and follow-up of EA. Um, my personal opinion is that, um, it's quite clear, um, from the connection of the three, talks that, um, this is not an academic problem, as Anka said, this is really, uh, a significant practical everyday problem for all the patients or maybe at least. Um, and the second thing is, um, it seems to. Be important um for many patients for uh all of their life. So this is um not something that resolves with age, obviously, um, as Andre um has shown and I'd be interested to see at a later stage, as you said, Andre, it, it will be interesting to compare coping strategies between. Children, adolescents and adults, and I, I, I strongly believe this um there will be a, a, a change and a shift in um strategies. I'm, I'm very sure. Um, so I think we, we can open um this meeting for, uh, discussion and also questions for all participants, um. I'm sure you, you found it um as interesting as I did and um so please um anyone who, who does have a question raise your hand with a raise your hand function um maybe switch on your video if you like, um, and don't forget to unmute yourself, otherwise we won't hear your questions. Um, so. Anyone from the floor who Who needs more input from one of the speakers. It's not the case. I do, um, you can also use the chat function if you like, um, but, um, maybe I, I start with one question to Andre. Are you, are you planning to investigate coping strategies, um, in adults as well? I would love that, but um I think the main focus at this moment for the coming year would be that we with our team in Rotterdam will be contacting uh the countries that have shown interest in um uh translating this first. So, uh, perhaps then uh if we have these different versions for different countries, um, we could do a more European approach of this problem. And we could see indeed, uh, also to see how it works over age from adolescents to adults and, and, um, uh, we could use a, a, um, approach um uh with, with many countries together if we have to have made this translation first. There have been some um. Questions already coming in, as I can see there's also a Q&A option. I don't know whether everybody's got that next to the chat option, but I see now that people are only adding their questions, um, um, to the, the chat version. So, I just read, um, I mean, I suppose everybody can read it, but um to those are uh who are only listening, um, there's a request from Lucia regarding um clinical guidance for a swallowing problem. I think, um, I regret to say this is probably not the right, um, Place to uh to answer to your question here, but um I mean this uh is also something that um that, that the Ernica Network is for and um we come back to you on that, I'm sure. So the first um question we can deal with here um goes to Mikaela um who has been asked, can you explain the difference between avoidance and distancing coping strategies? Yes, thank you very much for your question. I I will reflect on the categorization of coping, which was quite difficult and complex. So we used the children's and parents' own descriptions together with coping theory where distancing and avoidance was also in a general way described, and together with the context of Use we we try to make some distinctions. So there are commonalities when it comes to avoidance and distancing, but a discrepancy. So in the context of nutritional intake, we define avoidance as avoiding food or food situations and distancing as hiding or throwing away food. Any other questions from the audience? So, I think contact has been made on the clinical request here. Thanks, Uncle for instant reply. Yeah. Um, I'm really surprised to find that there's this this is worldwide response to webinars like this. I mean, starting from a European viewpoint first now to discover this responses from Venezuela or uh Middle America, so. Really nice to, to find that. I mean, there will be countries that are where it's it where it would be, could be night now, um. Yeah, thanks, thanks, Lucia. So um please help us to distribute our webinars as well in in South America. Maybe, maybe I can add to Mikaela's coping topic something. I really think this self-assurance for the patients to try again and again, even if they got a bolus blockade, and even if they have it on. I don't know. On meat to try half a year later, the meat again. This is really crucial for everybody, but that we can tell the parents go for it, and the sticky, so that's how we parents call a bonus cocaine, is is part of the learning process. It's only possible if it is a safe process. And then you can do the reprogramming of a negative experience, a sticky into something. It's a learning process. So I think the first task by the medical staff is really to make it safe, but once it's safe, we have to really encourage the patients and the parents to try it again and again because they all learn it. And it's amazing how some kids really go again and again, and we have this one famous article where mothers ask, does it really has to be a sausage? And she gives the answer yes, because it's nice to eat a sausage. So the daughter had again and again those bonus brocades, but finally she managed to eat a sausage, and that's that should be the aim for all children, yeah. And I think just to comment on that, that we are only in the beginning of understanding what how coping relates to health-related quality of life, and it's very complex, but in comparison with what we know about children with chronic conditions is that typically avoidance or distancing strategies. relate to poor, poor outcomes, but when it comes to active coping strategies and sometimes even problem solving, that relates to better health related quality of life outcomes. So I think just to open up about the communication and understanding that children's thoughts and behaviors in nutritional intake situations could Hypothetically have poorer or better outcomes. So coping is not just this child copes, so it's good. So coping is in what way do you deal with your situations? What do you think and how do you behave in relation to food and food situations. So that is one of the take home messages at this very early stage. And I encourage further studies because we know so little about this, but we have many thoughts. And it also shows us that that this is really a multidisciplinary issue. I mean, uh, in, in one country, it could be uh the pediatrician, uh, that's in charge, the one that gives all these kinds of information about coping. In other countries, it could be a psychologist or a speech language therapist or a dietitian and Uh, that also shows that this daily lives office, uh, uh, issues, those are issues of, of us all, and, and, um, shouldn't stay limited, uh, to an audience of, uh, uh, of medical doctors and, and psychologists. OK. If we don't have any further questions now, I think um The word goes back to Andre who still has some mentimeter um questions I suppose and um we would be happy if you stayed online um because uh this will will be a bit of evaluation as well. Um, the first question is, did this webinar add value to your professional work? So We're happy, of course, with these 3 people, um. And to this and, and of course we can imagine that part of it is uh because it's such a daily life issue, um, I can imagine for some people, for some for some parents, for instance, their this is their day to day life. So in fact, sometimes they don't, they know everything about this and they need to explain to the healthcare professionals what they know about this. So it's nice to hear from these 13 people that are still in the meeting, and I will, um. Switch to the last question we have for you, which is an open question, um. And the question is a question whether you missed certain issues. I think in the next, in the near future, we will also aim at webinars, uh, not uh only or not about esophageal resia, but about all the um clinical groups that are within Ernica, um, so that is one thing that you can count on, um, and, and. There are some members of a quality of life group already preparing new. new webinars after the summer holidays. Um, and I know that one of them, uh, will also be about the, the influence of, uh, of health issues on, on, on parents. Um, so mental health is a is an issue that will be. In fact, one of the uh future webinars about mental health in the. In these clinical groups. And practical, yeah, and that then you're addressing in fact what Miguel already started when you know more about coping and what is efficient coping and what really contributes to quality of life, then you also can know. More about what to advise to parents and patients and the parental perspective, um, yeah, we already started that, of course, because it's most of the time, especially in young children, that the parents are asking, are answering the questions and giving us the information about the important issues within a certain disease. But I do, I think it's an important aspect to keep on to because in looking into the field, there is a total lack of intervention studies, for example, and you could hypothetically try with the young children because there's so much potential with working very early in life to try and improve the long term outcomes also with regard to eating. So using a multidisciplinary approach and designing a program or psychoeducational coping program would be very interesting, although difficult, but interesting and valuable. Yeah, and also surgical, surgical perspectives. I mean, um, that's what we're actually planning to do within the, the Ernica Group that we would like to compare um the outcomes with regard to quality of life between different surgical um approaches, uh, which will not be easy, but it's one of our, our plans. Yes. OK, so thanks everybody for participating um this afternoon. Thanks to all three speakers. Um, thanks Iris for um helping us organizing the administrative work here. Um, and we hope to welcome you on one of our next webinars, uh, of our series on quality of life. Um, we have quite a few topics in mind and on our agenda, and they will be announced, um, soon. Probably after summer, I suppose. So wishing you all um a very nice uh summertime and holidays and we'll, we're gonna see you back after the summer. Thanks Ake, thanks Mikaela, thanks Andre, um, and thanks everybody again for participating. Thanks for thank you. Bye bye.