Eating Disorders in Pediatric Primary Care

From Medscape Pediatrics
An Expert Interview With David S. Rosen, MD, MPH

Laurie Scudder, DNP, NP

Editor's Note: The American Academy of Pediatrics released a new Clinical Report - Identification and Management of Eating Disorders in Children and Adolescents in December 2010. The report documents an increasing incidence of eating disorders in boys, who now represent up to 10% of all cases, and younger children.
The document emphasizes the importance of early detection and proper evaluation of children suspected of a disorder.
Medical complications of eating disorders can affect any organ system and necessitate a range of management strategies including medical care, mental health treatment, and nutritional intervention.
Medscape talked with the report's lead author, David S. Rosen, MD, MPH, Clinical Professor of Pediatrics, Internal Medicine, and Psychiatry at the University Michigan Medical School, Ann Arbor, about the implications of this information for primary care.

Medscape: Dr. Rosen, the report clearly notes the changing epidemiology of eating disorders, including an increased incidence in boys, younger children, and minority children. Are you able to speculate on some of the reasons for these changes?

Dr. Rosen: Some of it is better case finding. In the past we weren't looking for or recognizing eating disorders in populations where we weren't expecting to see them. Some of it is simply recognizing eating disorders that have probably always been there, but there are probably also changes going on in who develops eating disorders in the first place. As the media change, as our eating habits change, as our nutrition practices change, as our concerns about obesity have become very acute, a lot of kids are thinking about nutrition in ways that they haven't been asked to before. In a certain vulnerable population, that message sometimes gets misdirected. There are unintended consequences, which can result in eating disorders.

Medscape: The report describes the increasing incidence in younger children. The committee looked at genetic and environmental variables as they affect this disorder and examined the role of puberty in activating a potential genetic predisposition to the traits that often accompany eating disorders such as perfectionism and behavior rigidity. Yet, there is a rising incidence in prepubertal children. Can you discuss some of the reasons for this rising incidence?

Dr. Rosen: Again, I think that some of the increase has to do with better case finding, but the impact of that is probably quite small. We really are, in fact, seeing many more younger children with eating disorders than we ever have before. Let's just be clear that we don't have a certain explanation for why that has occurred. However, many of us are concerned that, as we have rushed to address the concerns related to obesity in the United States, we have hurried out interventions to try to encourage healthy eating that have, in some vulnerable populations, had unintended consequences.

If you are taught in school that fat is bad and you happen to be a 9-year-old without the cognitive ability to understand the nuances of that information, you are unable to recognize that that's not really a black and white statement. You decide that fat is bad, and you look at every label and, if that food has fat in it, you don't eat it. If you are even more inclined by virtue of an anxiety issue or obsessive compulsive traits to really dig in and grab hold of that way of eating, it doesn't take very long before you get into trouble.

Medscape: The report also noted a wide variance in estimates of prevalence. For example, the report provided estimates of bulimia nervosa ranging from 0.8% to 14%. Can you offer some insight into the reasons behind this variance, and is it related to differences in applying DSM-IV criteria?

Dr. Rosen: The prevalence of anorexia nervosa is fairly well-understood to be about 0.5%. The prevalence of bulimia nervosa is understood to be somewhere in the neighborhood of 2%-4%. Yes, there are some reports that will cite numbers that are quite different from that, but often those reports have very different ways of looking at populations. Sometimes they're looking at particularly vulnerable populations. Sometimes the definitions they are using are a little bit different, and we probably should acknowledge that the DSM-IV criteria are recognized by many as being something less than perfect in capturing the group of kids that do, in fact, have these disorders.

The biggest concern, of course, is the category of "eating disorder not otherwise specified." That has been sort of a "waste basket" for kids who clearly have disordered eating and certainly have all of the associated psychological and medical risks that go along with that, but they don't meet the strict criteria required to be diagnosed with anorexia or bulimia. They get left out of the statistics for anorexia and bulimia, which artifactually reduces the number of kids who are, in fact, affected by eating disorders. The result is that this other category of "not otherwise specified" eating disorders becomes quite large, very heterogeneous, and hard to get your hands around.

It is hoped that the DSM-V criteria, which are going to come out in the next couple of years, are going to help to better classify patients with eating disorders so that we can be more specific about their treatment and reduce the number that have to fall into that unhelpful "not otherwise specified" category.

Screening and Early Recognition in Primary Care

Medscape: The report provided some important guidance on screening and early recognition of disordered eating in children. What are some best practices for incorporating those screening strategies into the primary care environment?

Dr. Rosen: The first thing, and pediatric primary care providers do this already, is to always look at growth parameters. A child who is not following his or her established growth parameters should raise a red flag and prompt further evaluation. A fall in the height curve, a fall in the weight curve, a body mass index curve that is dropping -- those are all situations in which, at least, some further questions should be asked about what's going on.

In talking with kids about their nutrition and eating habits, something we should all be doing now, we should take note when children talk about dieting and express concerns about their weight. Those children require some further screening and evaluation to see whether these dieting behaviors are, in fact, healthy behaviors or potentially unhealthy behaviors. The same is true for physical activity. Kids who are very compulsive about their physical activity need to be queried further to determine what's driving that activity level.

One of the things that we have recognized is that some children are more vulnerable than others. In the young age group, children with pre-existing anxiety symptoms are more likely, in my experience, to go on to develop eating issues as their anxiety gets juxtaposed with their eating behavior. That's a group that requires further assessment.

We also know that some activities pose higher risk. Dancers, skaters, models, and wrestlers seem to be at increased risk and probably warrant additional attention to their nutrition and eating and activity habits.

Medscape: The report encouraged pediatric providers to seriously consider the possibility of an eating disorder if the child's family member or a friend or a teacher voices some concern.

Dr. Rosen: Correct. We are now out of the realm of preventive care. We are now discussing a child who is brought in because there is concern about a problem. It is absolutely true that, if a child is brought to a pediatric provider's office because somebody has expressed some concern -- whether that's a parent, a brother or sister, a friend, a teacher, or somebody at school -- a careful evaluation must be done despite the protestations of that child or teen. There is a relatively high likelihood that, in fact, something is going on.

Medscape: The report provided a comprehensive overview of the evaluation of children, and the message was that assessment needed to begin in the primary care office. Are there red flags that should alert a primary care provider that a child should instead be immediately referred to a mental health professional?

Dr. Rosen: Absolutely. Pediatric primary care providers should be able to begin the process of evaluating, and I'll use the word managing rather than treating, a patient who has a suspected eating disorder, whatever that eating disorder is. The evaluation includes asking the right questions to decide whether there really is a problem as well as getting a sense of the growth parameters and the direction of the weight trajectory. Look carefully for any signs of medical instability or consequences from the eating issue. Do a first-pass mental health assessment to make sure that child is not acutely suicidal and is safe being at home.

Make sure he or she is, in fact, eating and able to limit vomiting, if that is a problem. All of those are appropriate roles for a pediatric primary care provider at that first visit, whether that visit occurred because the family was concerned or because a problem was identified during a visit that was intended for another reason.

The next step is determined by the experience and comfort of the pediatric provider. There will be many pediatric providers who, once they have made the diagnosis of an eating disorder, will refer that patient to somebody with more expertise and experience in managing children with eating disorders or with the resources, such as dietitians and mental health providers, to provide a more comprehensive plan of care.

However, there are many primary pediatric providers who are comfortable in coordinating care and providing the medical supervision and will simply need to bring in a mental health provider and/or a dietitian to help with care. Let's acknowledge, however, that in some places, ready referral options are not available to the primary provider. Care is going to have to continue in that primary pediatric office because there are no easily accessible alternatives.

Nothing about this care is out of the realm of what a primary pediatric provider can choose to do if they are comfortable doing so. There is no imperative that patients be referred elsewhere. On the other hand, nobody should be forced into an uncomfortable situation of managing a patient who they feel unprepared to manage. Pediatric providers who really feel that this is not their area of expertise should, after that initial evaluation, feel justified in referring that family to someone who is more experienced. Even in that situation, I would contend that the role of the primary pediatric provider is still an important one. You have to make sure your patient gets to that referral and continues to be seen. Families and siblings in situations like this require a lot of support. That is a very important role for primary pediatric providers even in the setting of referral.

Comorbidities of Eating Disorders

Medscape: The report reassured primary care providers that many of the daunting number of medical comorbidities that may accompany eating disorders resolve with refeeding and resolution of purging. One of the exceptions, however, was brain changes. Could you comment on this?

Dr. Rosen: There are actually 3 areas where we have concerns that there may not be complete resolution of symptoms. The first has to do with growth. In very young patients who are still growing when they present with eating disorders, there are at least some data, although not particularly robust, to suggest that there can be permanent limitation of growth as a result of an eating disorder during critical phases of growth.

The second issue has to do with bone health. We know that the period of adolescence is a time when people lay down most of their bone mineral, and an eating disorder that extends throughout much of that period of time can result in lasting, irreversible, unrecoverable limitations in bone mineralization. That, of course, results in problems with bone health and increased potential for fractures not only during adolescence but throughout the rest of life.

The third area, which is the fascinating one, has to do with the brain. We have learned over the last decade and a half that there is loss of brain tissue and increase in cerebrospinal fluid that occurs particularly in anorexia nervosa. That is not surprising because we see lots of changes that seem to reflect changes in the brain, including changes in mood and cognitive ability. Much of the change in brain mass recovers with weight restoration as well, but there do seem to be some lasting deficits that extend even past the point of weight recovery. The implications of that are unknown. What is reassuring is that the associated changes in both mood and cognition do, in fact, resolve with weight restoration.

Medscape: The need for early identification and treatment is underscored by recognition of those changes that may not resolve. Is there a message in that for primary care providers?

Dr. Rosen: I am sad to have to say that I see a lot of patients with very advanced eating disorders who unsuccessfully sought care from other providers prior to coming to see me. Many were told to "just wait and see what happens." "Wait and see" approaches do not make sense when dealing with a condition that has this much potential morbidity, can progress very quickly, and in which treatment is challenging and becomes more so as the child becomes more ill.

The message that I have for providers is: Faced with somebody with an eating disorder, or even the suspicion of an eating disorder, you really need to move very aggressively towards intervention. That intervention may be an evaluation or may, in fact, be actual treatment. "Wait and see" approaches are not usually appropriate in these conditions. The group of kids who are most vulnerable and, by extension, most responsive to early intervention is the younger group. When we see the 10- to12-year-olds with eating disorders who might not meet the criteria for anorexia or bulimia, we are nevertheless very aggressive about treating them because our experience has been that they turn around really quickly if they get appropriate treatment. If you wait 6 or 9 months, these kids become entrenched in their disorders and can be just as difficult to treat as the patients who have had eating disorders for years.

When making the diagnosis of an eating disorder, the first place providers are likely to encounter resistance is with the child. They often deny that they have a problem, that it is as big of a problem as we say it is, or that it is the cause of the consequences that people are recognizing. You have to deal with that resistance. You cannot allow yourself to be steamrolled by it.

The second place where you may meet resistance is from parents who may minimize the problem, not recognize the problem, or who do not have the resources to be able to appropriately address it. To be fair, eating disorders are very costly in terms of time, energy, and money. That resistance needs to be met.

Bottom line: The more quickly we can move kids and families to definitive treatment once a diagnosis has been made, the better the outcome is likely to be.

Conclusion

Medscape: Dr. Rosen, do you have any additional thoughts about the role of the primary care provider in ensuring ongoing care for a disorder that may require years of intervention?

Dr. Rosen: Patients with eating disorders have lots of other health issues too. The primary care pediatric provider is going to be involved in all of those other issues -- immunizations, sports physicals, sore throats, broken arms, and all of the other things that require a pediatric provider. If you know your patient has a chronic illness -- it doesn't matter what the chronic illness is -- and you are seeing that child for their back-to-school physical, you need to make sure that they are also doing well with respect to their chronic illness. That includes ensuring that they are seeing the people they need to see and making sure that the issues related to their chronic illness are not creating additional challenges. An eating disorder is a chronic illness, and primary providers, even if they are not involved in the ongoing management of the eating disorder, certainly need to inquire and follow up, assess, and support the patient and their family. They must also be mindful of the possibility that the same problem could occur in a sibling because these are genetic disorders and they run in families.

Medscape: Do you have any final insights?

Dr. Rosen: If parents or pediatric providers are considering the diagnosis of an eating disorder only when the child shows up with 20 pounds of weight loss and amenorrhea and growth failure, then the diagnosis is too late. We need to be much more attentive to this possibility earlier on. We need to be responding when the kids are beginning to express weight concerns, when they are beginning to talk about dieting or becoming more compulsively overactive. We cannot wait for the point when a child has lost a lot of weight or a young girl has lost her period and is already in medical trouble. That is a message not just for primary care pediatric folks but also for families. Particularly in vulnerable populations, it is a message that pediatric providers must make sure that families are hearing in an anticipatory way. If you are the mom of a ballet dancer, if you are the dad of a wrestler, if you are the parent of a child who has a long history of anxiety issues -- those are folks who need to get a heads up about the things to look for early in the process of a developing eating disorder rather than at those end stages.

A second point that I do not think we've talked about at all but that I think is extraordinarily important is the conventional wisdom that eating disorders never get better: If you have it, you have it for life. You learn to control it. Be prepared to deal with it until you die. That is just incorrect. Eating disorders do get better. Most patients recover fully, which means that they are not only medically healthy but no longer have those dysfunctional thoughts and attitudes about eating and weight and shape and body image.

An even larger majority recover fully from a medical perspective, although they might have some persistently dysfunctional thoughts about weight and body image. It is really important to correct misunderstandings that once you have an eating disorder you have it for life. You do not. The expectation for nearly all children and most adolescents with eating disorders is that they will recover fully. Now it might take a long time. It will be a lot of hard work. It will be frustrating. There is no guarantee. However, our expectation when we meet people with an eating disorder for the first time and are describing what this is going to be like is to emphasize that our finish line is complete cure. We are not being "pie in the sky" when we say that. That really is what we expect is going to happen. It might take a long time, but that truly is our goal, and we achieve it most of the time.

Medscape: That is a very positive message for our conclusion. Thank you very much, Dr. Rosen.