Under-reporting eating disorders?

This study, just out from Rhode Island Hospital and Brown University, is not only interesting, it's important. And timely. And has implications for the way eating disorders are both diagnosed and treated.

Researchers went back through data collected from some 2500 psychiatric patients and looked at the incidence rates of various diagnoses of eating disorders. They found--unsurprising to anyone familiar with eating disorders--that the vast majority of diagnoses were for ED-NOS, or "eating disorders not otherwise specified."

This is a catch-all diagnosis for those who don't meet the strict diagnostic criteria for anorexia or bulimia. The study authors intelligently suggest that the fact that ED-NOS is the most common e.d. diagnosis (at least in their sample)

suggests that there is a problem with the clinical applicability of the diagnostic criteria in the DSM-IV eating disorder category.

Yes! Too true. Why does it matter? Let me tell you a story.

When my daughter became ill, at age 14, our pediatrician diagnosed anorexia. It was clear to all of us that that's what she had. Her weight was down to 75% of what it was supposed to be; she was in ketosis, she was afraid of all food and drink, she'd withdrawn socially--in short, she had a classic case.

Following good medical procedure, the pediatrician referred my daughter to a psychiatrist. Our insurance would cover only a shrink-in-training, a very nice woman without a lot of experience. My daughter spent our first visit, and most subsequent visits, with her head in my lap, sobbing.

I'm not sure which of the diagnostic criteria for anorexia the psychiatrist felt my daughter did not meet:

DSM-IV Criteria for Anorexia Nervosa

1. Refusal to maintain body weight at or above a minimally normal weight for age and height (eg, weight loss leading to maintenance of body weight less than 85% of that expected or failure to make expected weight gain during period of growth, leading to body weight less than 85% of that expected).
2. Intense fear of gaining weight or becoming fat, even though underweight.
3. Disturbance in the way in which one's body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or denial of the seriousness of the current low body weight.
4. In postmenarchal females, amenorrhea ie, the absence of at least three consecutive cycles. (A woman is considered to have amenorrhea if her periods occur only following hormone, eg, estrogen administration.)

My daughter definitely had #1 and #2 (though more on the wording of #1 in another post). She wasn't expressing #3, partly because by then she wasn't expressing much of anything, other than intense anxiety and fear. And she hadn't begun menstrual cycles yet, so #4 wasn't applicable.

In any case, the psychiatric fellow diagnosed her with ED-NOS--and you will be surprised to learn, as I was, that because they're classified as mental health disorders and appear in DSM-IV, only a psychiatrist can truly diagnose an eating disorder. The pediatrician's word counted for nothing.

The diagnosis informed our daughter's entire treatment with the psychiatrist, most of which consisted of useless attempts at anti depressants. The psych was convinced that if we treated the depression, my daughter's eating "issues" would magically improve or even resolve.

Why does it matter? Because we wasted a lot of time, and most of our precious mental health benefits, dicking around with this stuff. If the diagnosis had been anorexia, the psych could have looked up research showing that antidepressants are ineffective during acute malnutrition, and that depression is a symptom of anorexia, not a cause. She probably could have looked this stuff up anyway, but since she was never convinced my daughter had anorexia, I assume she just didn't go there. I don't know for sure what she was thinking, and it stopped mattering after a while.

Back to the study, which hypothesizes that many of the ED-NOS diagnoses are true cases of anorexia or bulimia that for one reason or another don't meet 100% of the clinical criteria. And that psychiatrists should take another look at the criteria and the cases.

I agree. And there's another implication, too: I'm convinced that the low incidence rates are one reason so few research dollars have been spent on anorexia and bulimia. Where are you going to spend your money, on a disease that affects 2 percent of the population or on one that affects 30 percent?*

So three cheers for the Rhode Island researchers, whose work, if somewhat obvious, is long overdue. I look forward to seeing how it might begin to change the clinical picture in eating disorders.



*I refer, somewhat sarcastically, to the proposal that obesity be classified as a psychiatric illness in DSM-V.