DSM-V: A Rose by any other name…
It is true that childhood-onset anorexia nervosa would be the same illness no matter what we called it, so why does it matter how it is defined in a medical/psychiatric reference manual like the DSM? Why are so many of us lobbying hard to revise the definition of anorexia nervosa to meet clinical reality? For one thing, insurance companies use the DSM as one tool to decide who gets treatment and who doesn’t.
One of the main reasons it is important how psychiatric illnesses (brain disorders) are defined in the DSM is that patients who do not meet the criteria (listed below) for anorexia nervosa set forth in that manual are thrown into the diagnostic category “EDNOS” (Eating Disorder Not Otherwise Specified), which I can assure you is a swamp of wobbly definition.
Diagnostic Criteria for 307.1 Anorexia Nervosa in the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, current edition):
- Refusal to maintain body weight at or above a minimally normal weight for age and height (e.g. 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% that of expected.
- Intense fear of gaining weight or becoming fat, even though underweight.
- Disturbance in the way 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.
- In post menarcheal females, amenorrhea, i.e. the absence of at least three consecutive menstrual cycles.
The consequences of being labeled “EDNOS” are more far-reaching that you might think. Recently, The Joy Project, a grassroots organization devoted to finding help for sufferers of eating disorders, sent me a summary of their patient inquiry findings. They report having interviewed 90 people with an eating disorder whose average age was almost 24 years, 88% of whom were female, 44% of whom had been given a diagnosis of EDNOS.
11% of the 90 respondents in the Joy Project had received no treatment for their eating disorder. When asked why not, 70% said it was because “I believed my weight needed to be below the 85% diagnostic threshold in order to need treatment”. Interestingly, and contrary to what is often assumed as the reason help is either not sought or not given, only 40% said they did not receive treatment because “I did not feel ready to recover” (multiple responses possible). In other words, in 70% of those who did not receive treatment, their perception that their illness was “not severe enough” rested on their belief that they were not thin enough (the DSM-IV would agree). This sad reason was more important and more common than them not wanting to get well.
Of the 89% who responded that they had received treatment, 26% felt that severity of their eating disorder was NOT adequately addressed by their treatment provider. When asked why they felt their providers had not adequately addressed their illness, 66% felt it was because their “weight was not considered low enough” for them to “have a problem” (see criterion A above). 51% said it was because they still were menstruating (see criterion D). Apparently, because they were not less than 85% of “expected weight” (however that is figured!) and/or because they were still able to menstruate, their providers felt they did not meet DSM criteria and hence were not seriously ill.
Respondents were asked whether they had ever been denied eating disorder treatment coverage by their insurance provider. 64% of them replied “yes”. 64%!! Most of these (72.5%) were “because my insurance plan provided no coverage for eating disorders-specific treatment” or “my insurance plan did not cover recommended level of care.” But 6% reported no insurance coverage based on “not meeting criteria for anorexia nervosa” and another 8% reported that their insurance refused to cover EDNOS.
Of the 90% who had received treatment, more than half (52.5%) said they were forced to terminate treatment early. For 33% of them the reason they had been given by their insurance company for the termination was that they had gained weight and now no longer met the critical weight threshold as defined in the DSM-IV Rebecca Peebles, of Stanford University, and her colleagues took an official look at EDNOS to answer the question whether or not those young people who were given this diagnosis were less sick than those whose symptoms put them in the category “anorexia nervosa”. Their results were published in the April edition of the journal Pediatrics.
Some of the sickest patients they reported seeing were those who had been overweight before they got ill and who then lost a large amount of weight quickly. Yet because they are often still within the “normal range”, such patients would receive a diagnosis of EDNOS and be treated as “less ill” by definition.
It is important to accurately diagnose and categorize human illnesses so that we may study them wherever we find them and work on treatment in a rational way, but when categorization leads to a worsening of the clinical situation for the patient, surely the law of unintended consequences is at work here?