Eating disorders (EDs) are part of the current emergency in children’s mental health, with pandemic-related factors that include social isolation, disrupted routines and excessive screen time. In this guide, Sara M. Buckelew, MD, MPH, debunks myths about which populations get EDs; offers keys to assessing patients and tips on talking to families; and describes inpatient treatment. Learn why pediatricians – who typically seek to reassure parents – may need to raise the alarm instead.
Thank you. Um, yes, and please, um, interrupt if there are questions. I put some slides together, but I'm happy to answer questions as they come up or, um, I'm happy to, to be here with you today. Um, so, gonna talk some about, um, eating disorders, um, during, uh, the pandemic, um, and a little bit about, um, Both assessing disordered eating and eating disorders, uh, as well as the hospital. Um, and just like to always start with some key principles in relation to disordered eating, um, thinking about that, that obviously eating disorders are serious disorders with potential for life-threatening complications. Um, some studies talk about mortality for anorexia being as high as 10% lifetime and putting it the same as childhood leukemia. Um, so, um, Uh, also recognizing that eating disorders occur in all genders, ethnicities, socioeconomic groups, and patients of all people of all sizes and weights, um, and that unfortunately, denial of symptoms and ambivalence for change is often part of the disorder. I think also recognizing that, um, physicians and the medical establishment is often seen and often is a source of weight bias and stigma. Um, and thinking about that parents' messages about food and weight matter. Um, so when I talk about eating disorders today, most, uh, of what I'm talking about often tends to be restrictive eating disorders, um, which, uh, really there are, um, three main, uh, ones that we see. So anorexia nervosa, which is, you know, um, key features include severe restriction and patients are underweight, um, uh, with significant body image disturbance and fear of fatness, um. Atypical anorexia nervosa, which is kind of um uh been more and more present uh in the media. There was just actually a large um New York Times Magazine cover article on atypical anorexia, which is essentially the same as anorexia nervosa, all the same features psychologically, except that patients are um at a normal to higher weight, um, that is considered typical or normal. Um, bulimia nervosa, we'll talk about a little bit, um, but, uh, uh, and binge eating disorder, I'm not really going to talk about at all. Um, and then avoidant restrictive food intake disorder, um, which I think is, um, also becoming more and more recognized, which was new to the DSM-5, um, which is Uh, unlike anorexia is very heterogeneous diagnosis, meaning patients present in many different ways, um, but those are the patients who have severe restriction of, um, foods for a reason other than body image, so there can be no body image disturbance. So sometimes that can present as, um, you know, fear of vomiting that's causing, um, restriction. It can present as like, um, Severe picky eating or, um, you know, we see it, um, not uncommonly among patients with autism who may have particular issues with certain textures, um, or even colors. I had a patient, you know, last week tell me, I, I never eat white food. Um, so, kind of, uh, there's some reason other than, than body image. Um, so you are all aware, well aware of this, um, just, uh, with the National Emergency and Children's Mental Health that was declared, um, about a year ago or a little bit over a year ago, and certainly that has played out, um, Uh, over the years, um, in terms of, uh, this focus on, uh, mental health, uh, amongst adolescents. Um, and, um, as you can see from all these headlines, um, eating disorders are part of that, um, uh, that crisis, um, for sure, and we have more and more kind of research to show that that is true, that there has been, um, an explosion in, um, Uh, presentations of, um, disordered eating. And this is from a study, um, that was done, um, at Michigan, which shows kind of the, um, The number of admissions per month for um medical complications, it's kind of a unit similar to ours. Medical complications for anorexia, and you can see from 2017 through um through the start of the pandemic was, you know, pretty stable, and then Um, as the months increased, uh, following the start of the pandemic, just the surge. And if you looked at our data, which, um, I have done at UCSF pretty similarly, seeing, um, the same kind of change in slope. So, um, I have no doubt that you all are also experiencing that as part of your practice and what you see. Um, this is, uh, another study, but you can see this is from Boston, similar just, um, change in slope, uh, again of inpatient admissions and patients who were admitted for medical complications, again, a unit similar to ours. Um, and, you know, these increases are not just in the US but have been seen and described globally. Um, so, uh, so it is happening, um, across the world with studies showing, um, increases in Europe, Australia, Asia. Um, and, uh, also, um, published in Israel. So if we think about some of the reasons for the rise in disordered eating during uh the pandemic, um, it's kind of a perfect storm, um, when we think about adolescence. Um, so, um, both with increased risk, and we'll talk a little bit about media exposure, um, disruption to daily routine and social isolation, also contributing to increased risk, as well as the lower protective capacity and access to care, um, all worsening symptoms. Um Oops. So if we talk a little bit about the media exposure, um, this is actually a study that has nothing to do with the pandemic. It actually was done, um, you know, over 10 years ago. It was also all in relation to, um, the earthquake and tsunami in Japan, um, and it showed kind of the impact of distressing news content on disordered eating. So, certainly during the COVID pandemic, Um, you know, with adolescents on their phone, um, and doing kind of the increase in doom scrolling, um, just exposure to TV and internet coverage of the Japan disaster was associated in and of itself with disordered eating, including dieting and, um, oral control. So there's some research to show that peri-traumatic reactions and sleep disturbances are associated with disordered eating, and certainly that could, could play a part. We also know that screen time during the pandemic, um, Uh, increased, uh, you know, tremendously, um, with, you know, one study showing, um, a mean total daily screen use of 7.7 hours per day, which was double, um, prior to the pandemic. Um, and so, you know, screen time during the pandemic we know increased, and we also I know that much of the media exposure that teens are, are bearing witness to, including social media, um, has a focus on body image and can make body images worse, uh, for our teens. And this is just from some of the internal documents that came from Facebook and in relation to Instagram. Um, and the negative impact, um, that Instagram was shown to have, um, internally from their own research on teen girl body image specifically. Um, and I also just want to point out some of the weight, uh, media messages, um, particularly around COVID. You know, early in the pandemic, there was, um, you know, concern that being overweight, uh, was, was going to worsen your, um, Your disease, should you get COVID. Um, there was also kind of, uh, a lot of messages about, um, weight gain, um, and the inevitability of weight gain related to the change in life that happened at the start of the pandemic. Um, and those messages were kind of Um, consistently in the lay media in terms, you know, there was the uh renaming of the COVID-15 in terms of talking about weight gain associated with, um, with changes in lifestyle, um, that were related to, to COVID, um, and there became this, um, Both inevitability of weight gain as well as overstated messages encourage encouraging dietary restriction, encouraging people to avoid weight gain at all costs. Um, and then if we think about, you know, obviously, uh, the disruption to daily routine and structure, loss of extracurricular activities, um, loss of meal socialization with friends and classmates, and this is just a Um, uh, a quote, uh, I was doing lots before, but even more now, partly cause I actually like it, partly to fill the time and partly from an unhealthy driven mentality. Rest days feel unnecessary because I'm resting every day. So just change in, um, kind of how teens perceive their daily routine and some of that leading to, um, to more compulsive, uh, potentially behaviors. Um, and this is, uh, a quote, uh, also from a study that my eating disorder feels more valuable to me than ever. It's the only constant in what feels like a completely upside down and scary world, and it's my only locus of control. So for patients who were really feeling like the COVID pandemic was, um, was something that was out of their control completely, their eating disorder may have felt, uh, more controllable, um, in a negative way. Um, and then social isolation, um, uh, you know, these quotes, um, again, just sort of highlight some of the, the feelings that, um, teens expressed, um, uh, in talking about social isolation and changes in their eating patterns, um, both, you know, some who had worked on trying to be able to eat with people and then not, um, and then some Um, who just really missed kind of that, that practice. Um, and then just a little bit about kind of the other piece in terms of lower protective capacity and access to care, um, and thinking about food insecurity. Um, so, um, there has been, um, you know, more research about, um, That in adolescent, um, populations who are followed into adulthood, that food insecurity is associated with extreme weight control behaviors and may, um, contribute also to binge eating, um, um, and so, um, something else, um, that kind of during the, the pandemic was, was, um, an issue. If you think also about, um, Uh, patients who are struggling with eating disorders often having very particular, um, food habits or, or, you know, where they may only eat, like, if you think about about a patient with RFID who only eats one kind of yogurt and And then, you know, during the height of COVID when there, you know, was food shortages, that one type of yogurt wasn't available, and kind of how that may have contributed to that patient's um medical stability and stability in terms of their eating disorder. Um, and then, you know, the big thing, um, Uh, then I, I, I'm sure you have all felt and certainly we have all felt is just the lack of available treatment, um, and so, um, You know, eating disorders, um, Typically require um specialized care, at least for, for therapy support, um, kind of, um, finding a therapist who is not a specialist may really um not help, um, in terms of, um, supporting recovery. Um, and, um, you know, with the mental health crisis, um, and certainly the demand for mental health services during that crisis, the lack of available specialists, um, and available services, um, really led to treatment bottlenecks and inability to access appropriate care, no matter how hard. Everybody was trying. Um, and, you know, with that, um, patterns changed, right? This is a study that looked at the increase in, um, emergency room visits for eating disorders, and you can see from that, that red line compared to the blue line sort of at the start of the pandemic. Um, the red line was what was actually observed, and the blue line was more what was expected. Um, people were looking for, for treatment and services wherever they could get it. So, you know, including emergency room visits, um, uh, and, um, and specialists, you know, I think, um, Uh, we've, we, you know, got an influx of referrals from other specialists who, you know, may have been referred patients that, um, Uh, that providers weren't sure where to send, so, you know, if they have amenorrhea, seeing, um, Uh, an OBGYN or a sports colleague, or if they, you know, have weight loss seeing a GI position, all of those things make sense, um, but it, it just also, you know, spread out the, the burden, um, as well. Um, you know, I want to, um, to just also highlight, um, that there is an urgent need to prioritize more affordable and accessible eating disorder treatment, you know, um, the historical myth of, um, eating disorders only happening in skinny white affluent girls or the swag myth, um, and really us having increasing evidence of what was probably there, um. About eating disorders, um, being on the rise amongst men, amongst older adults, um, amongst gender and sexual minority individuals, um, and underrepresented ethnic groups, and, um, definitely, um, Uh, in patients, um, from all, um, Uh, all walks of life. One of the things that we have evidence on is that higher SES does predict higher rates of treatment seeking amongst those who are ill, and I, I think that also is, um, in relation to kind of potentially this bottleneck, um, and, um, Uh, really needs to, to be addressed, um. At a much larger level. I think also an understanding that there are differences in presentation amongst different groups, um, and differences in treatment which, which haven't been studied as rigorously as they should be. Um, so, you know, thinking again about the treatment bottleneck, um, uh, causing long wait times, causing the burden to fall on referring in primary care providers, um, providers being referred to other specialists, and patients being increasingly and more severely ill. And, and in a disease where we know how important early intervention is, particularly for anorexia, um, we know that, um, the longer symptoms go on, um, the Um, poor the outcomes. Um, I think also thinking about, um, you know, if you have concern where there's smoke, there usually is fire, so, um, being attuned to your concerns, parents' concerns, um, about these, these, um, Uh, potential diagnosis. So Um, I have a patient example, um, that I can go through, um. Uh, so a parent brings their 15 year old in who decided they wanted to eat healthier and exercise more, and parents noted that they've lost significant weight. Um, and, um, in part I bring this, this slide up, um, uh, this is a study that also showed the kind of the impact of COVID-19 on adolescents with eating disorders at presentation, um, and it showed that for those This is a small study size, but if you look at for those who presented, um, kind of COVID triggered eating disorder, which was those 2020 patients really, I think, um, that they presented with a lower BMI. More medically unstable and more likely to require inpatient admission. So, um, that was a lot of what we were seeing kind of, um, in 2021 and even, even some now. Um If you think about the patient that presented, um, this is the scar. Um, so the scar is a validated screener for, um, uh, for disordered eating or eating disorders. Um, it's from, uh, the UK, um, and, uh, when the first question is literally asking about, uh, purging, so do you make yourself sick because you feel uncomfortably full? Um, do you worry you've lost control? Have you recently lost, um, 15 pounds or more in a three-month period? Um, do you believe yourself to be fat when others say you're too thin, and would you say food dominates your life? Um, and yes to two or more supports, um, increased concern for an eating disorder. Um, and, you know, um, I think It's also, you know, a diagnosis is not necessary. If you're concerned, be concerned, and I think as pediatricians oftentimes, um, we do a lot of reassurance, um, we reassure families, um, and, and with eating disorders, it's kind of It can be helpful to kind of, oftentimes you have to tip that because um oftentimes we need to raise more urgency than uh a family may have. So it may be that kind of um parents or caregivers have normalized the disordered eating behavior or um Uh, or they may have some, um, even personal history as the parent or caregiver, and, um, so they may minimize and, and the eating disorder itself will Encourage that minimization, right? So, um, so the the patient, the adolescent or child may also kind of, um, uh, help, uh, that minimization. So, um, oftentimes our job as pediatricians is actually to raise more urgency and more alarm, um, rather than than reassure, um, uh, which just can be a little bit different than how we, we are used to working. So, um, you know, if you're seeing concerning weight patterns or you're seeing concerning behaviors, it is appropriate to be concerned. And if you have a patient that you're concerned about, you know, um, doing your medical evaluation, um, obtaining height and weight in a gown, preferably, um, and we typically do a urinalysis before, uh, we have a patient weighed, and the reason that we do that Um, is to help us, um, kind of interpret both the vital signs and, uh, the weight, um, in that if a patient is very dry, um, that can be helpful to know kind of, um, Uh, interpret their heart rate and their orthostatic signs, um, as opposed to if the patient's, um, very water loaded or, you know, has a, a very dilute urine, which may be helpful in knowing, um, if they are, um, drinking a lot of water to make their weight appear higher than, than they want it to. Um, I have had patients who have water loaded so much that they've presented with hyponatremic seizures. Um, so it's, it is helpful to get that information. Um, uh, especially if you're setting weight goals for patients who might use, uh, use drinking water to, to get their weight up for weigh-ins. Um, again, plotting growth and evaluating growth curves, um, looking at vital signs, um, performing a physical exam, and obtaining an EKG and lab work. Um, again, With lab work, um, especially, it is often normal, um, even if a patient is quite ill. So, um, You know, trying not to also minimize concern that um uh if the labs are normal, that everything is OK. If you're still concerned, you can still be concerned, uh, because labs can be often um misleadingly normal. Um, this, this graph is from the Society of Adolescent Health and Medicine, um, and it's really kind of, um, highlighting the definitions of malnutrition and, and, um, You can see that malnutrition can be defined by BMIZ score, but it also can be defined by percent of body mass loss. Um, and so that can also be important in terms of thinking about, um, some of those patients with, um, more of an Typical anorexia presentation and that they may have lost a very high percentage of their body mass at a very um short um time period even if their BMIZ score is um not in these levels, they still may meet criteria for uh for malnutrition. Um, these are the lab tests that we typically, um, uh, think about ordering or do order, um, kind of the standards, um, Uh, that you might expect, um, and then other ones to consider, um, including celiac, including, um, urine drug screens, um, we, um, also, um, you know, thinking about, um, hormone levels depending on, uh, menstrual status. Um, these are the, the same criteria which were more recently updated, particularly the orthostasis. Um, vital signs, uh, were updated, um, and the orthostatic heart rate change was made a little bit higher, um, uh, guidelines, um, for adolescents, I believe it went to a heart rate change of greater than 40, um, whereas, uh, for adults it is still at, um, Uh, 35, um, and, um, and then sort of the biggest reason that we may admit, um, is, uh, bradycardia, um. Hypotension is another common reason for admission, and actually, um, if you look under that other section on the, the far right, um, uh, the BMI percentile is another reason that we may admit, um, just, uh, based on, uh, percentage of expected body weight. Um, in the hospital, the inpatient treatment, really food is the medicine. Um, we explain it to families and patients that, um, just like any medicine that you were to get in the hospital, we pick all the medicines. So, um, we select all of the food that patients are getting. Um, they get 3 meals and 3 snacks. Most patients start at about 2000 kilocalories per day, um, and we advance the nutrition daily. Um, all patients must get their nutrition. So if they're not able to eat it by mouth, they can have a liquid supplement. We use Boost Plus, um, in the hospital, and they're replaced calorie for. Calorie for what they do not eat. Um, and if they're not able to drink the supplement, then they do get an NG tube, um, and get it that way. Um, and the way that we advance nutrition is really meant to minimize, um, risk of refeeding syndrome. Um, And um, And on average, right now, our hospitalizations are about 8 days. Um, so, um, you know, some patients are shorter, some patients are longer, some patients are a lot longer, but on average, it's about 8 days. Um, if we have this patient who doesn't meet admission, um, criteria, so, um, but you're still concerned and the parent kind of says we need help and we have no idea where to start, like what, what do you, what do you do with that patient in your office? Um, so family-based treatment is the most evidence-based treatment, psychological treatment for, um, anorexia nervosa. Um, it has some studies also supporting its use in bulimia nervosa and some in, um, ARFID. Um, it is also evidence-based for atypical. Anorexia, um, really the core tenants of family-based treatment are empowering parents. So, um, what I often tell families is, um, this is not touchy-feely therapy. Um, the patient themselves likely will not like the therapist, um, Uh, it is not kind of television therapy of lying on the couch and talking about how you're feeling. It is really parent coaching in many ways about how to manage those, um, exact, uh, situations of the kid sitting at the table refusing to eat. And, um, so it's meant to empower parents, um, to really not allow the eating disorder to be in charge. Um, it also really focuses on separating the, the child from the eating disorder so that parents are able to see what is the eating disorder and to even remember some about what is their, what is their child and that these two entities, um, are not the same, um, and, and they're not, they're not punishing their child, they're trying to get rid of the eating disorder, um, even though it can, it can seem, uh, more punishing. Um And I think, you know, as, as, um, uh, pediatricians, um, who may be following patients who are in FBT, um, you know, thinking about, again, how to, um, continue to Um, empower, uh, parents, um, validating again that this is incredibly hard, trying to reinforce to everyone that no one is to blame. Um, there can be often, um, a lot of guilt, a lot of, um, Uh, blaming on every side, so trying to reinforce that message. Um, I already talked about trying to raise, uh, raise the level of concern to enhance engagement, just to kind of piggyback on that, you know, family-based treatment, um. Often refers to the first session. The therapists often refer to the first session even as the, the funeral session, because it's really, again, meant to kind of raise urgency in parents about this being a life-threatening illness and really the need for parents to kind of take control over it. Um, provide some basic nutrition guidance, uh, to parents, um, even empowering them that, you know, um, most often they've successfully fed their kid up until this point, and so trying to, to reinvigorate them, um, to knowing they can do it, um. Um, uh, for the patient, I think it can be helpful to talk about common physical complaints that happen with refeeding. So, you know, letting them know to expect, um, that they're gonna feel full, that they're gonna feel bloated, that they're gonna feel uncomfortable, um, you know, that some things that can help or, you know, Um, abdominal massage, or playing a game for distraction, or thinking about some simethicone, or trying to, um, uh, to really, um, do some anticipatory guidance about some of the physical issues that, um, that may happen. Um, and then also creating A backup plan with everyone about what to do if, if the teen or patient acutely refuses to eat. So when would they call you? When might they present to an emergency department? Um, do they know to call their therapist? Kind of what would their plan be, um, if they're just, um, uh, really refusing, you know, is it that they call you after 24 hours of not having eaten or kind of what are their safety steps? Um, and that's kind of all of the slides that I have. Um, I think that, um, you know, the pandemic is, is still ever-changing and with us, um, and, you know, we have seen a little bit of stabilization in terms of the numbers of patients that we're seeing. Um, at least it doesn't seem to be increasing quite as it was. Um, we've done a lot, um, and I think a lot more is known about how to manage patients with eating disorders via telehealth, um, that wasn't true before the pandemic. Um, so those are kind of my, my quick slides, and, um, I'm gonna stop, stop sharing and see if people have questions.
