Transcript
Associate Professor Ellen Fitzsimmons-Craft Hi, thanks so much for having me. I’m Ellen Fitzsimmons-Craft, and I’m an Associate Professor of Psychiatry at Washington University School of Medicine, and I’m really pleased to be here today to talk with you about eating disorders. In terms of an outline of what we’ll be going over today, first, we’ll be talking about the diagnostic criteria for eating disorders and their features, warning signs, what eating disorders look like, the biopsychosocial model, and also, a bit about screening for eating disorders.
So, first, I just wanted to start off highlighting a recent report that came out in the last couple of years, on the social and economic cost of eating disorders. This was specific to the United States but preven – provides some great data to provide some context for the importance of this problem. So, first, just in terms of the prevalence of eating disorders, we know that about up to nine or almost 10% of individuals will experience an eating disorder in their lifetime, which in the US, amounts to almost 30 million Americans that will have an eating disorder at some point. Eating disorders are also extremely severe, and can have high mortality, and research has shown that there are up to – over 10,000 deaths per year as a direct result of an eating disorder, equating to one death every 52 minutes. We also know that eating disorders affect everyone, despite some of the stereotypes, and we’ll talk more about that in a bit.
Eating disorders are also highly costly to society. As you can see here, this report, which was put out as a collaboration between a group at Harvard and the Deloitte Economic Access Team, found that the yearly economic cost of eating disorders was almost 65 billion, with an additional loss of wellbeing per year equating to about 327 billion. This includes very high cost to the hospital systems in terms of both high costs for Emergency Room visits and inpatient hospitalisations, as well as, you know, loss of wellbeing, that’s kind of borne by individuals and family, government, employers, society. So, clearly, these are really severe common problems that we need to find some solutions for.
But first step, of course, is to better understand, and so, let’s talk a little bit about eating disorder diagnoses. So, we’ll go over each of these now, in terms of the DSM-5 criteria for each and some of their features. So, first, let’s talk about anorexia nervosa, or AN. So, according to DSM-5, the first criterion for this disorder is restriction of energy intake, relative to requirements, that leads to a significantly low body weight. And here, significantly low weight is defined as a weight that’s less than minimally normal, or for children, less than minimally expected. It’s also accompanied by an intense fear of gaining weight or becoming fat, a disturbance in self-perceived weight or shape. We’re often finding that weight and shape are among the most important things for a person’s self-evaluation. And it comes in one of two sub-types, the restricting sub-type, or the binge eating and purging sub-type. So, in the restricting sub-type, there would not be any binge eating or purging present.
In terms of features of AN, we see a lifetime prevalence of about 1%. Historically, we’ve seen a prevalence of about 90% female to 10% male, and it’s also been shown to be more prevalent in occupations and sports where having a lower body weight may be seen as advantageous in some way. So, for example, wrestling, dancing, running, gymnastics. In terms of onset, this usually onsets in the teen years, although typically, we see two peaks. One being around the age of 13, when many individuals, and girls in particular, are entering puberty and their bodies may be changing. And then another around the age of 18, when individuals may be experiencing life transitions, such as going off to university or starting in the workforce.
In terms of course, this can be variable. Less than half of individuals with anorexia nervosa have been shown to fully recover and about 20% do experience a chronic course. But younger age of onset is associated with better outcome, as is early intervention, really highlighting the need to address these problems as soon as they’re identified. And in terms of mortality rate, this can be up to five to 10%, which is one of the highest mortality rates of any psychiatric illness, second only to opioid use disorder.
Regarding physical consequences, this can include things like osteoporosis, brittle hair and bones, having yellowish skin, lanugo that can develop, so that’s that kind of downy hair on the face and limbs. We can also see impaired renal function, bradycardia and heart attacks and cardiac failure. So, as you’ll recognise, many of these physical consequences are really side effects of starvation. So, these are, again, you know, very serious mental illnesses that shouldn’t be ignored.
So, moving onto the DSM-5 criteria for bulimia nervosa, or BN, the first criterion is this involves recurrent episodes of binge eating, which can be described in terms of two key features. First, eating an amount of food that’s definitely larger than what most individuals would eat, in a similar time or circumstances. So, you know, more than – for example, many people may have a little more than they usually do at a holiday meal, but this is, kind of, eating an amount that would be much larger than what most individuals would eat, you know, maybe for a more regular meal or any time of day. Accompanied by a sense of loss of control overeating during the episode. So, that loss of control is often described as feeling like a ball that’s rolling down a hill, or feeling like you just can’t stop once you get started.
Those recurrent episodes of binge eating are accompanied by recurrent inappropriate, compensatory behaviours that individuals engage in, in order, or in the hopes of preventing the weight gain that they believe can be associated with those episodes of binge eating. So, these would be behaviours like self-induced vomiting, or using laxative or diuretics, engaging in fasting, so, you know, going a whole day or more without eating, or excessive or compensatory exercise.
In order to meet DSM-5 criteria, these behaviours are engaged in for, on average, about one time a week for three months. And we also see in BN that that self-evaluation is unduly influenced by body weight and shape, so again, we see that body weight and shape are among the most important things in terms of how individuals judge themselves as a person. And finally, this disturbance doesn’t occur during episodes of anorexia nervosa. So, if an individual has lost substantial amounts of weight and is underweight, as we discussed in AN, even if they were engaging in some binge eating and purging, that would not be defined as bulimia nervosa. That would be that AN, binge purge sub-type.
Regarding the features of bulimia nervosa, this has a bit higher lifetime prevalence, about one to 2%, and we still, historically, have seen about 90% females to 10% males. Onset tends to be a little bit later than anorexia nervosa, so usually from about age 15 to the early 20s, and the course can be chronic or intermittent. We do see a crossover to other eating disorder diagnoses occur in a minority of cases, for example, to, you know, binge eating disorder, other specified feeding or eating disorder, which we’ll talk about in a bit.
Mortality for this disorder is lower than that of anorexia nervosa, but risk of suicide and suicide attempts is higher. And regarding the physical consequences of bulimia nervosa, a lot of these can be contributed to the recurrent engagement and binge eating and self-induced vomiting behaviour, in particular. This can include things like swollen glands in the neck and jaw, rotting teeth, which actually leads Dentists to be ones that often identify cases of bulimia nervosa. We can see liver and kidney damage, electrolyte imbalance and also, rupture of the oesophagus.
So, moving onto the next main eating disorder diagnosis in DSM-5, which is binge eating disorder, or BED. So, this is recurrent episodes of binge eating, just like we talked about in bulimia nervosa, that are characterised by a large size, as well as that experience of loss of control that we discussed. And the binge eating episodes are associated with three or more of the following features. So, one, eating much more rapidly than usual, two, eating until feeling uncomfortably full, three, eating large amounts of food when not feeling hungry, four, eating alone because of feeling embarrassed by how much one is eating, and five, feeling disgusted with oneself, depressed or very guilty afterwards. This is associated – this pattern is associated with very high distress, and on average, the binge eating is occurring one time a week for three months, to meet diagnostic criteria. And this is not BN or AN, so those diagnoses really trump this one in the DSM-5.
Regarding features of BED, the lifetime prevalence is higher, about three to 5%. We see a three to two ratio of adult females to males, and in adolescence, that ratio is three to one, girls to boys, so this one is more common in men than other eating disorders we’ve discussed so far. In terms of onset, this typically occurs during late adolescence or early adulthood, so up to the mid-20s, but it’s more likely than the other eating disorders to develop later in life. In terms of course, the natural course of binge eating disorder is often longstanding. We can see an average duration of 14 to 16 years, and it can take quite a while, unfortunately, for individuals to be identified with BED and to receive services, sometimes. And we do see a high rate of crossover to BN, and vice versa. Importantly, BED also does affect individuals across the weight spectrum, but it is two to four times more common among individuals who are experiencing overweight or obesity.
So, OSFED is other specified feeding or eating disorders. So, these are a few different categories in DSM-5, that don’t quite meet those diagnostic criteria that we just discussed for AN, BN and BED, and then a couple of other important eating disorders are noted, as well. So, under the OSFED category, an individual could be presenting with atypical anorexia nervosa, so we see all the same features of anorexia nervosa, except that the individual’s weight is not technically in the underweight range. So, this may be somebody who’s still lost quite a bit of weight and we’re seeing, you know, that very high emphasis on weight and shape, but their weight may still be above, you know, sort of, the minimal threshold of what’s been determined normal.
We can also have diagnoses of BN and BED that are of low frequency, and/or limited duration. So, maybe they don’t quite meet that frequency of one time per week, or they haven't yet – those behaviours haven't yet been in existence for three months, so we can use an OSFED diagnosis in those case. Purging disorder is a repeated engagement in purging, without the accompanying binge eating behaviours. And then finally, night eating dis – syndrome is recurrent episodes of eating at night, typically after one has gone asleep and then wakes back up. So, that’s an OSFED presentation, as well. And then, finally, we have unspecified eating or feeding disorder, which is a bit of a catch-all diagnosis, and is characterised by presentations in which symptoms characteristic of an eating disorder do cause clinically significant distress or impairment, but don’t meet the full criteria for any of the other diagnostic categories that we’ve discussed.
One more eating disorder of note is avoidant restrictive food intake disorder, or ARFED – ARFID. And this is an eating or feeding disturbance that’s often manifested by a persistent failure to meet appropriate nutritional and/or energy needs, and is associated with one or more of the following. And so, first, I should say, this might be an eating or feeding disturbance like having a total lack of interest in eating our food, or maybe avoiding certain types of foods based on the sensory characteristics of the food, maybe not, you know, liking how they feel. Or even concern about the aversive consequences of eating, maybe an irrational fear of vomiting, for example. And this eating or feeding disturbance might result in significant weight loss. So, this is, you know, failure to achieve that expected weight gain or faltering growth in children, so maybe kids who are falling off their growth curve, a significant nutritional deficiency, you know, dependence on supplements, and/or marked interference with psychosocial functioning.
So, importantly, this disturbance is not better explained by a lack of available food, or by any sort of culturally sanctioned practice. And it’s also important to note that this is not accompanied by any major weight and shape concerns. So, this eating and feeding disturbance, you know, would not be seen as being a result of having, you know, a high level of body dissatisfaction, or a high level of concerns about weight and shape. You know, it’s really, kind of, manifesting on its own, and wouldn’t better be diagnosed as anorexia or bulimia nervosa.
So, as you heard me talk about, you know, when we discussed some of the gender breakdowns in our eating disorder diagnoses, you know, I talked about men and women. Because, historically, we’ve had the most research on eating disorders in those populations, and particularly, most of our research has been in girls and women, and even more research, you know, has really focused on white cisgender girls and women. But we do know that transgender and gender diverse individuals do face significant stressors, including things like discrimination, barriers to healthcare access, peer victimisation, and family rejection and maltreatment. And these stressors, independent of, or in concert with, gender dysphoria, or not feeling like one’s, you know, gender assigned sex matches with their gender, may elevate risk for eating disorders.
There has been more recent data that have – has found that variation in reported prevalence of eating disorders in transgender and gender diverse populations ranges from two to 18%, with rates of disordered eating even greater. And other research has also shown that these individuals may experience greater severity of eating pathology. So, for example, research has shown elevated rates of self-induced vomiting and diet pill and laxative use in transgender and gender diverse young adults, compared to their cisgender peers. And it’s also been shown that these individuals have higher suicidal ideation and attempt rates than individuals with EDs who aren’t transgender or gender diverse. So, really, an important population that’s actually quite at high risk for eating disorders and that we need to do more research on moving forward.
And, overall too, just to further highlight the magnitude of the problem, as we discussed, you know, anorexia nervosa has a prevalence of around one to – 1%, bulimia nervosa one to two, you know, binge eating disorder, somewhere in the three to five range. And then we have that whole other specified and unspecified eating disorder categories, which amounts of pretty high prevalence of eating disorders as – over the lifetime, as we discussed in the beginning, up to a 10% lifetime prevalence, so these are not uncommon problems.
They’re also problems that have very high mental health comorbidities. So, one very large study found that over 50% of individuals with anorexia nervosa had another Axis I diagnoses – diagnosis, with anxiety disorders and mood disorders very prevalent, as well as substance use disorders. In bulimia nervosa, comorbidity was even higher, up to 95%, with again, anxiety and mood disorders very common, and substance use disorders also common. And then in BED, we see another Axis I diagnosis in 70% or more of cases. These disorders can also be comorbid with personality disorder diagnoses, including in anorexia nervosa, it can be quite common to see those Cluster C diagnoses, those anxious avoidant personality disorders, and in Cluster B, the more dramatic, erratic presentations. So, moving on, let’s talk a little bit about warning signs for eating disorders. So, in terms of warning signs or symptoms, or what to look out for in individuals who may be experiencing these concerns, first, there may be very high preoccupation with food, eating and/or calories. So, individuals can engage in a lot of cooking or baking, or obsession with recipes, but really refusing to eat, you know, maybe most of that food that they’re cooking or baking or cutting out the recipes for. There can be a really high obsession with watching cooking shows or cal – counting calories obsessively, cutting out food groups. There can also be very high reluctance to eat with others. You know, maybe someone who’s saying, “I’ve already eaten,” or they bring their own food to meal outings in a way that isn't typical of what their peers of family members are doing.
We can also see food rituals, so cutting food into really small pieces, and pushing that – those little pieces around the plate, maybe to make people, kind of, think that they’re eating, but, sort of, you know, kind of, distract people about that, and also, an excessive use of condiments. There can also be secretive behaviour related to eating. So, this might be especially prevalent in those binge type presentations, where maybe there’s, you know, food missing from the home, or wrappers are, kind of, found in the car or in the individual’s bedroom. And then maybe a pattern of starting to notice that somebody is really regularly using the bathroom shortly after eating, which would likely be to vomit.
There’s also those high weight and shape concerns. So, this can include really frequent self-weighing, or really frequent use of the scale at home, maybe wearing baggy clothes to hide their shape. Individuals can also spend a lot of time scrutinising their shape or their body in the mirror, or engage in a high level of body checking behaviour, you know, pinching skin on the stomach or on the thighs, or things like that, just to, you know, do their own assessment of how they measure up. And then, finally, we may see some of those physical signs that we talked about before.
So, as we’ve discussed, you know, these are really important problems to try to detect as early as possible, and in the US, the National Center of Excellence for Eating Disorders has put out a really nice checklist to recognise the symptoms of an eating disorder. This is freely available at the link noted on this slide. And this checklist will help you to understand those signs of an eating disorder, so you can help to get people the help that they need. This could be a good checklist to use in Primary Care, or even just for any provider or individual who might be concerned about somebody. And so, this is a good one to keep on hand.
So, let’s talk for a moment about what do eating disorders look like? Eating disorders have often been stereotyped as affecting skinny, white, affluent girls, standing for the SWAG stereotype, as it’s sometimes been referred to. And I think you’ll hear that a lot in our culture, that, you know, “Oh, I” – or “they couldn’t possibly be somebody that experiences an eating disorder,” because there’s this really widespread belief that, you know, again, only a certain type of person, again, often times these skinny, white, affluent girls, could experience eating disorders. But we do know that eating pathology is a spectrum, there’s not only one kind of eating disorder, like we’ve discussed here.
You know, we have eating disorders of all kind of types, and eating disorders also have been shown to affect individuals of all genders, you know, as we discussed, these disorders are actually appearing to be highly prevalent in transdren – gender and gender diverse individuals. They also occur across, you know, racial and ethnic groups, and some disorders have actually been shown to be even more prevalent in certain individuals of racial and ethnic minority backgrounds. They also present in individuals living in higher weight bodies, as we discussed, sexual and gender minorities, and individuals with low socioeconomic status, and even those living with food insecurity.
And, you know, it can be important to, kind of, think about weight and eating disorder presentation, because, again, there’s often this idea that eating disorders only occur at that very low weight, or, you know, more that anorexia nervosa type presentation. But weight and eating disorders can have a lot of different ways it may present. So, we can see weight fluctuation, we can also see weight suppression, where there’s a significant difference between an individual’s highest weight since reaching adulthood, and their current weight, outside of pregnancy, of course. And then we can also see in adolescence a lack of weight gain or height growth. So, this might be presented as an individual, you know, really falling off of their growth curve, you know, those charts that are often used by their Paediatricians, as seen to the right on this slide. And I think it’s just overall important to take away the message that eating disorder symptoms and behaviours can occur in individuals of any body size, so we really should be attuned to those problems in everyone. So, despite that SWAG stereotype, the eating disorder reality is that it can be anyone, and you can’t just tell who might have an eating disorder by looking at them. Again, these can occur in individuals of all types of backgrounds.
As noted too, food insecurity has actually been receiving some additional attention in the field in recent years. And food insecurity is defined as unpredictable or unstable access to food, which can lead to a, kind of, feast or famine response, where individuals may eat more during periods of abundance, or maybe after, you know, some of their benefits or their food stamps come in, and then eat less during perse – periods of scarcity, or where there may not be enough money for food. And this can really resemble that binge restriction cycle, which could sometimes trigger the onset of an eating disorder, and maybe eventual engagement in some of these behaviours for other types of reasons.
Individuals with food insecurity may also use compensatory behaviours to deal with shame that they may be experiencing. We can also see engagement in extreme restriction, to feed other family members. You know, maybe, you know, trying to save food for children in the family, hiding food or eating in secret, aversion to certain food groups. And importantly, food insecurity does disproportionately affect individuals from racial and ethnic minority backgrounds, low income households, rural populations. So, these individuals may be more likely to experience, you know, not enough access to food, or unstable access to food, which again, has actually been shown to be associated with disordered eating and an increased likelihood of BED and BN.
Research has also shown that children growing up in food insecure households are more likely to engage in binge eating, night eating, secretive eating, and so, this is a really important issue to pay attention to. Again, not assuming that just because somebody isn't from a wealthy background, you know, they can experience an eating disorder, and actually, food insecurity may put them at risk for one. So, you know, in response to all these myths that are out there about eating disorders, the National Center of Excellence for Eating Disorders in the US has put out some really great materials about the “Nine Truths about Eating Disorders,” that really dispel some of the myths that are out there. So, truth number one being that “Many people with eating disorders look healthy, yet can be extremely ill.” Number two, “Families aren’t to blame,” which sometimes they historically, have been, but instead can be patients and providers best allies in treatments. Number three, “An eating disorder diagnosis is a health crisis,” so it’s not a choice, it’s not about vanity, but this is “a health crisis that really disrupts personal and family functioning.” Number four, “Eating disorders aren’t choices, but are seriously biologically influenced illnesses.” Number five, as we’ve been discussing, “They affect people of all,” you know, “walks of life, all genders, ages, races,” etc. Number six, they “carry an increased risk for both suicide and medical complications,” which we’ve discussed here today. Number seven, “Genes and environment play an important role in the development of eating disorders,” so it’s not one or the other, it is their combination. Number eight, reiterating what I just said, “Genes alone don’t predict who will develop eating disorders,” and number nine, “Full recovery from an eating disorder is possible, but early detection and intervention are important.” And if you're interested in learning more about these Nine Truths, I’d really encourage you to check out this publication, first authored by Katherine Schaumberg, and from Cyndi Bulik’s team, published in 2017 in the European Eating Disorders Review. That’s on “The Science Behind the Academy for Eating Disorders,” and the NCEED’s “Nine Truths about Eating Disorders.” Also, I just wanted to spend a moment, you know, kind of, reiterating what I just mentioned about it’s just genes alone or environment alone. It’s – we really think about the – how eating disorders develop as being derived from a biopsychosocial model, or meaning that all of these influences, kind of, combine to create the perfect storm for an eating disorder. With regard to the biology, you know, somebody may have genetics that put them at greater risk for an eating disorder, or maybe is going through puberty or menopause, or maybe has some change in certain brain chemicals. All those can, kind of, set the biological stage for an eating disorder, and then might be coupled with some psychological risk factors, that an individual could be experiencing that could further elevate that risk for an eating disorder. So, for example, maybe somebody who’s generally prone to experiencing anxiety or depression, maybe someone who’s prone to having high perfectionistic tendencies, or maybe doesn’t have the very best coping skills.
So, we have that biology and that psychological that are, kind of, coming together, and then maybe further triggered by things in the individual’s environment, to actually, you know, kind of, pull the trigger for an eating disorder. This could include, you know, cultural factors, like in much of Western society, the influence on achieving, you know, certain body ideals that may be very thin or very muscular, or whatever. Also, pressure from family or peers or the media, or experiencing critical comments from family or peers, and also, those media and social media messages. So, all these things, kind of, come together, to result in the development an eating disorder. And it’s almost never just one of these things that would lead to that.
So, finally, I just wanted to end, you know, given the importance of these problems and the severity of problems, you know, talk for a moment about how we can screen for eating disorders. And screening and identification is a really crucial first step in accessing care for eating disorders. About 80% of people, or more, never receive any kind of treatment for their eating disorder. So, it’s really important that we work to better identify these problems. And this is especially critical, you know, really this identification piece, given that less than half of individuals with eating disorders recognise they have a problem. But that self-recognition is associated with help seeking.
In one study, they found that close to half of participants who recognised they had a problem with their treatment had ever sought treatment, versus only one in five who did not recognise a problem had sought help. So, we really need to work to inner – increase identification, both, you know, kind of, providers identifying individuals with these issues, you know, family members, close friends, as well as increase that self-recognition. But there are a lot of current problems in screening and identification. Those stereotypes get in the way of eating disorder identification, both by providers, and, you know, even without yourself, you know, maybe not feeling – like, I’m not the type of person who could experience an eating disorder. There’s also a gender – a general under recognition of binge type eating disorders. Again, eating disorders are often thought of as that anorexia nervosa piece, and providers often miss eating disorders, and this problem is just further exacerbated among those who don’t fit the stereotypes. And research has, indeed, shown that individuals from racial and ethnic minority backgrounds with eating disorders are significantly less likely than their white counterparts to be diagnosed with an eating disorder, or to even be asked by a Doctor about eating disorder symptoms.
So, early detection is key, but patients rarely present directly for eating disorders care. They may be secretive or ashamed, or again, they may not even realise that their problem yet, you know, is that serious that it should warrant treatment. So, we’d really push for routine screening with Primary Care providers or Mental Health providers, and leveraging those existing relationships to, you know, screen in a sensitive manner, and then facilitate connection to referral resources. And, again, just because we can’t reiterate it enough, early diagnosis and treatment is associated with better prognosis, so the earlier we can catch these problems, the better.
So, who should be screened? Well, you know, I think many of us in the field would argue that given the prevalence of eating disorders, up to 10% of individuals in their lifetime, all adolescents and adults should be screened as part of new patient visits and/or annual physicals. But if we want to think about groups that are particularly high risk, those might include adolescents and young adults, you know, those about 12 to 25, when we see a vast majority of eating disorders onset. Patients in key transition periods, so this could include things like, you know, puberty, menopause, but also life transitions, individuals going away to college, or maybe experiencing a divorce. Patients with certain medical conditions that have been sociated to – been associated with increased prevalence of eating disorders, like GI complaints and diabetes, athletes, patients with a family history, patients seeking treatment for weight loss. Military and veterans are actually at increased risk for eating disorders, and patients with a trauma history, as well.
So, now I just want to spend just a couple of minutes just talking about three available screening tools that you may find of use. The first is the SCOFF, which can be used in adolescents and adults, and is comprised of five items, and the letters really, you know, stand for some of the key words in the questions. So, one, “Do you make yourself sick because you feel uncomfortably full?” Two, “Do you worry you’ve lost control over how much you eat?” Three, “Have you recently lost over 15lbs or one stone in a three-month period?” Four, “Do you believe yourself to be fat, when others say you're too thin?” And five, “Would you say that food dominates your life?” So, one point if given for a yes for each question, and if an individual endorses two or more of those, research has shown that further assessment is indicated.
And the National Center of Excellence for Eating Disorders in the US has put out this really nice tool, that’s available at eatingdisorderscreener.org. This is called the Screening Brief Intervention and Referral to Treatment for Eating Disorders, or the SBIRT-ED tool, that was originally really designed for Primary Care providers, and helps providers to actually administer that SCOFF in their practice, and gives practical tips for how to talk to a patient about their result, and actually even some language for the electronical medical record that can be copy and pasted. So, you might find this to be a really helpful tool for you.
Another alternative screen to the SCOFF is the Eating Disorder Screen for Primary Care, or the ESP, which can be used in adolescents and adults. And so, this is just a different five item screener, that has some research support behind it, as well, and like the SCOFF, two or more yes responses indicate that further assessment is indicated. And then, finally, there’s the Binge Eating Disorder Screener-7, or the BED-7, which has been validated for use in adults. And so, if you're particularly concerned about BED, this might be a tool that you would want to use.
And so, that is all I have for you today. Thank you so much for listening, and for being here today to learn a little bit about eating disorders. I really appreciate your time.