A change in the way anorexia is diagnosed may make it easier to help more teens, not just thin ones, with the illness. Previously, overweight or obese teens were more likely to fall through the cracks when they developed anorexic behaviors. Now, the release of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) has broadened the disorder criteria by taking away the weight requirement. The change shifts the focus of the diagnosis from “being thin” to the behaviors of those with the illness.

The previous criteria perpetuated the idea that anorexia is a weight disorder—rather than a psychological one. “A lot of people need help even if they don’t narrowly fit the definition of an illness,” says David Hahn, medical director of The Renfrew Center of Philadelphia. “This criteria makes clear that the behaviors, even without a very low weight, are pathologic and need to be addressed. The criteria may very much help pediatricians catch an eating disorder sooner and may teach the public and families to intervene more quickly if it’s understood that anorexia doesn’t only mean underweight.”

Anorexia nervosa most often begins in adolescence and affects approximately 0.3 percent of teens. An additional 0.8 percent were found in one large study to have “subthreshold anorexia nervosa”—they showed the symptoms but did not meet all the criteria. Overall, about 6 percent of teens suffer from some kind of eating disorder, such as bulimia, binge-eating and other eating issues previously classified in the DSM-IV as “Eating Disorder—Not Otherwise Specified” (ED-NOS).

Now the DSM-5 changes have led experts to express optimism that adolescents who may not “look” anorexic might start getting treatment they need rather than being overlooked entirely or diagnosed with ED-NOS. More than 55 percent of teen girls and 30 percent of boys report some kind of “disordered eating” symptoms, such as fasting, diet pills, vomiting or using laxatives. The challenge is catching those who will take it too far. “Before, patients were very sick before meeting criteria, and the evidence is pretty clear that if you interfere in anorexia before there’s been significant weight loss, the outcomes are much better and the illness is easier to treat in an outpatient setting,” says Kimberli McCallum, founder and medical director of eating disorder clinic McCallum Place in Saint Louis.

Reducing the ambiguity of diagnoses

Most overweight or obese teens with eating disorders have been diagnosed up to now with ED-NOS, regardless of whether they were binge eating or showing anorexic behaviors such as starving themselves or purging. In fact, under the DSM-IV more than half of all diagnosed eating disorders were classified as ED-NOS. “We had too many atypicals,” says Ovidio Bermudez, medical director of child and adolescent services at Eating Recovery Center in Denver. “That reflects that the other criteria were weak, not matching what we see at a clinical level.”

ED-NOS was also not always taken as seriously by families, patients or insurance companies. “A lot of the changes in the DSM-5 have been geared toward decreasing ED-NOS as a diagnosis for folks who don’t fit into the other categories because it’s a catch-all bin,” says Espra Andrus, a licensed clinical social worker who specializes in eating disorder treatment. “If I’m sitting in an appointment with a parent and I say ‘Your child has Eating Disorder Not Otherwise Specified,’ it doesn’t carry the punch of seriousness with them, and it tends to be a little tougher to get insurance coverage, especially for inpatient care.”

Yet research has shown that mortality is higher for ED-NOS, at 5.2 percent, compared with 4 percent for anorexia and 3.9 percent for bulimia. Also, the long list of medical complications associated with anorexia and bulimia—heart problems, reduced bone mineral density, gastrointestinal problems, breakdowns in thyroid or liver function—are just as likely to occur in malnourished teens labeled with ED-NOS.

Previous criteria obscured the problem and the data

Data are scarce on the extent to which anorexia might affect teens who have a normal, overweight or obese body mass index (BMI) because most research into eating disorders and obesity lately has focused on binge eating disorder, the newest eating disorder addition in the DSM-5. But being overweight can also be a gateway to anorexia or bulimia if a person starts trying to lose the weight in unhealthy ways.

In a case study in Pediatrics recently, Leslie Sim at the Mayo Clinic described two obese teens who went more than a year with anorexic behaviors before they were diagnosed because they never dropped below an expected average weight for their ages. Sim presented data at the International Conference on Eating Disorders in Montreal in May showing that 35 percent of 126 anorexia patients at her clinic had a history of overweight or obesity. Those patients had lost an average of 5.2 BMI points compared with the 3.75 average points lost by the other patients—and it took an average 10 months longer for the previously overweight patients to be referred to the clinic. “We know that early intervention is the key to making a full recovery,” Sim says. “If you start out in the normal range, you lose a lot of weight, it's more evident that there's a problem. But when you start out and weigh more than your peers and you lose 60 pounds, everyone congratulates you and no one looks into how you lost that 60 pounds.”

Research has been limited since the previous definition excluded overweight patients, leaving them out of study populations. If that patient who lost 60 pounds started at 200, she previously could not be diagnosed with anorexia per DSM-IV criteria because she would have been more than 85 percent of the ideal BMI for her age. This would be the case even if she had lost her period and was experiencing dizziness, heart problems and other life-threatening physical symptoms of rapid, unhealthy weight loss. Now, the first DSM-5 criterion for anorexia nervosa, replacing the weight requirement, reads, “Restriction of energy intake relative to requirements, leading to a significantly low body weight in the context of age, sex, developmental trajectory and physical health. Significantly low weight is defined as a weight that is less than minimally normal or, for children and adolescents, less than minimally expected.”

The second criterion for the disease in the DSM-IV, an “intense fear of gaining weight or becoming fat,” has also been updated with the addition of “or persistent behavior that interferes with weight gain, even though at a significantly low weight.” The third remains mostly unchanged, regarding a person’s preoccupation with and/or misperception of their body weight or shape. And the previous fourth criterion—at least three missed periods—has been removed altogether. Although the DSM-5 recommends using BMI percentiles for adolescents to denote the severity of the disease from “mild” to “extreme,” the criteria notes “the level of severity may be increased to reflect clinical symptoms, the degree of functional disability and the need for supervision.” Additions of “partial remission” or “full remission” have also been added to prevent recovering anorexics from being rebranded with ED-NOS as their conditions improved.

According to the Cynthia Bulik, distinguished professor of eating disorders at the University of North Carolina at Chapel Hill School of Medicine, the new criteria is unlikely to lead clinicians to diagnose someone with a high BMI with anorexia nervosa, but they could diagnose them with “atypical anorexia nervosa,” a subtype under “Other Specified Feeding or Eating Disorder,” which replaces the previous ED-NOS. “The real kicker,” she says, “is going to be getting physicians to notice this. If the child is falling off the growth curve, then that’s a red flag.”

As other eating disorder experts point out, a primary care doctor or pediatrician is often more likely to see an overweight teen’s weight loss as a positive rather than investigating how that weight loss is occurring and whether it’s healthy. “So these kids start losing and people compliment them, tell them they’re disciplined and look wonderful, which is addictive to a kid, but they can absolutely get some health problems going on, such as dehydration, digestive issues, cardiac issues and difficulty concentrating,” Andrus says.

Predicting the practical effects of the new criteria

The new criteria could play out in the realm of health insurance claims as well. According to Los Angeles attorney Lisa Kantor, who represents patients who have been denied insurance coverage for eating disorder treatment, most insurance companies automatically refused any patients for overnight treatment if they were more than 85 percent of their ideal weight. “The medical community that treats eating disorders has long recognized that weight alone should not determine the proper level of care,” she says, “but insurance companies use weight as a disqualifying factor.”

Russell Marx, director of Adolescent Eating Disorders Program at the University of California, San Diego, and chief science officer of the National Eating Disorders Association, expects to see big changes in diagnosis and treatment with the addition of binge eating disorder but less impact on anorexia diagnoses as the number of patients with ED-NOS is reduced. “I don’t think it’s going to open a whole world of treatment for people who weren’t being treated [for anorexia],” he says. “The fact that you have that diagnosis isn’t the key; it’s what your insurance company says. Even if you have the diagnosis, that doesn’t guarantee you treatment.”

Others are more optimistic. “One hope is that in understanding how severe and whole-body the consequences are, patients will have broader insurance coverage for the medical, the psychiatric, the nutritional and the psychological aspects of the disorder,” McCallum says. She also points out that any time criteria change, the relevance of past data also changes. “A lot of the studies will need to be repeated because the boundaries of the disorders will have changed,” she says. “We’re hoping that it doesn’t backfire in terms of insurance coverage.”

But the change may help improve data, says Eating Recovery Center’s Bermudez. “It may open up the inclusion criteria in some studies and it would also lend credibility to the knowledge base around the medical complications related to caloric restriction and weight loss,” he says. He is also more hopeful about change, even if it comes slowly. “It takes a long time for knowledge and information to permeate,” he adds. “I don’t think we’re going to change our view overnight that to have anorexia you have to be thin just because we have a new clinical diagnostic criteria.”