Friday, December 19, 2008

ICD-10 vs DSM-V

At what point should a diagnosis be medical—in the ICD—as opposed to mental—in the DSM?

Psychiatrists are working on the next version of the hefty psychiatric "bible" of diagnoses (DSM-V) to replace the current DSM-IV. In newspapers around the country, an article is circulating about it. Here is a link to one copy of the article, in the New York Times: Psychiatrists Revise the Book of Human Troubles

The debates are passionate, because many “mental” disorders are “medical,” “biological,” “physical.”

So at what point should a diagnosis be MEDICAL, and in the ICD, as opposed to MENTAL and in the DSM? After all, more and more "mental" disorders are now being found to be medical problems. And, the ICD already has many of these "psychiatric" disorders listed making most of the DSM redundant.

Edward Shorter, a leading historian of psychiatry is quoted as saying, “In psychiatry no one knows the causes of anything, so classification can be driven by all sorts of factors” — political, social and financial.

"No one knows the causes" -- That's what most troubles me. At least with the catch-all ICD diagnosis of "encephalopathy" (ICD-9/ICD-10: 348.39 / G93.49) there is the acknowledgement implied that it is something medical affecting the brain.  Sleep disorders are other good ICD codes to look into. All of my younger daughter's  former psychiatric diagnoses turned out to be adequately covered by ICD codes, once we took a longer - different - look at what was going on with her. Hypothalamic dysfunction (ICD-10: E23.3) covers a lot when one realizes how much the hypothalamus does. But encephalopathy is a good general-use term.

It troubles many who have biological issues they were born with, or acquired, that they get diagnoses from a list in the mental/psychiatric diagnostic manual (DSM) rather than the medical one (ICD).

What about gender identity which is now believed to be simply due to brain formation influenced by the hormones the fetus was exposed to en-utero? Or some cases of schizophrenia that are mitochondrial disorder, or complex bipolar and schizophrenia disorders that are a constellation of genes merging from both parents. Some researchers even consider them akin to a "birth defect."

So at what point is it "medical"?

Even though these major "mental illnesses" ARE coded in the ICD, but under the section labeled "Mental and Behavioural Disorders, that doesn't mean they should be called by the ubiquitous euphemism "mental illnesses." 

After all, mental retardation, symptoms of Parkinson's and organic (physical) problems manifesting in hallucinations are coded in there as well. The term is a construct of society and is not indicative of what the illness actually is. Here is an interesting discussion by Henry A. Nasrallah MD in the Dec. 22, 2008 edition of Current Psychiatry online, titled "Diagnosis 2.0: Are mental illnesses diseases, disorders, or syndromes?"

The problem may be in the complexity of these disorders–-a constellation of genes as opposed to a single gene and a single problem.

Scientists say fish oil helps prevent and alleviate ADHD, bipolar & schizophrenia. And on autopsy many are deficient in the long-chained fatty acids even though they should not have been. Well.... there is a MEDICAL diagnosis for a problem with fatty acid metabolism. You can now easily get your child tested for it (See helpful links here).

Other studies show there is commonly a problem with methylation of B vitamins--a genetic problem and indeed, one pharmaceutical company is now marketing a prescription methylated B vitamin (Deplin) for the “mental” diagnosis of “depression.” And again - you can get your child tested for the problem. The list goes on with gluten sensitivity and intestinal malabsorption, thyroid hormone problems, etc.

So, at what point should the constellation of these physical problems be removed from the DSM altogether, and put into the ICD in a separate category altogether? Each one, separately, is medical. Why, when taken all together, should it be "mental"? Specifically, why do we call it "mental illness" when we do not call the same symptoms resulting from epilepsy or Parkinson's, "mental illness."

Perhaps then, a major part of our problem is social. We are using the wrong label in our speech. And that generates misunderstanding and stigma. But how do we change something so ingrained in our social fabric.

Indeed, some people are avoiding the DSM labels altogether—and just having the child labeled with umpteen different ICD (medical) diagnostic codes that are not considered "mental illness."

Even my younger daughter who was labeled for years from the DSM-IV with one of those “unknown cause” mental diagnoses is being treated for a multitude of physical problems “commonly associated” with the “mental” diagnosis… and voila, the symptoms of the DSM-IV diagnosis are gone. The only doctor left who considers her to still have the mental diagnosis—he now calls “in remission”—is the psychiatrist.

After all, psychiatrists are trained to diagnose all symptoms from the DSM without knowing, or treating, the biological causes.

I don’t agree that her “mental illness” is “in remission.” The underlying biological causes are simply being appropriately treated medically, not psychiatrically.

The options are that her “schizoaffective” is either a misdiagnosis, OR the schizoaffective is actually, just as many scientists now suspect, medical— caused by “the perfect storm” of genes and biological problems. Which goes back to whether diagnostic labels for these types of physical problems affecting brain function are mislabeled, and consequently misplaced. Variations, perhaps, should actually be in the ICD-10 rather than the DSM-V.

Based on our reading of research studies, as well as from our experience, the insanity of diagnoses is as follows: If the “schizophrenia/schizoaffective” is found to be “thyroid” and ONLY thyroid, it is not really schizophrenia… And if it is ONLY a fatty acid metabolic problem it is still not “schizophrenia,” and if found to be only a sleep disorder it is not schizophrenia… but if it is found to be “gluten sensitivity” it is schizophrenia (Research shows some cases of “schizophrenia” have all symptoms ameliorated by a gluten-free diet[1]).

But if it is thyroid AND gluten sensitivity, AND casomorphins, AND methylation problems, AND sleep disorder... it is still “schizophrenia?” Likely, there is some underlying, connecting pathophysiology in all this, but we just don't yet know what. What we DO know is its medical.

There may already be a single ICD code to describe brain dysfunctions such as those manifesting in symptoms of schizophrenia of unknown cause, that is NOT due to lack of mental health—“encephalopathy” even if idiopathic (of an unknown cause).[3] That ICD-9 code would be 348.39  and the ICD-10 code would be G93.49

Perhaps the problem is more than not having the right diagnostic labels in the right places, but in not having the doctors making the right diagnoses. After all, the medical doctors send our children to the psychiatrists. The psychiatrists only think in terms of which "mental" DSM diagnostic code the brain symptoms fit into. They won't think to use the existing codes from the ICD even when there is obviously a physical component to “the mystery illness.”

Will even the "encephalopathy" of unknown cause diagnosis prompt a doctor to properly test and treat the underlying constellation of problems—tailoring treatment to the individual? Our experience is that with a "mental" diagnosis—even though that means the cause is unknown—the medical doctors just blow the patient off as having “mental illness.” Why?

And there is no single ICD diagnosis for a constellation of underlying problems both in body and brain of the people I know with DSM-IV diagnoses. And the DSM-IV diagnoses that they are given do not encompass their metabolic, dietary, hormonal, and sleep challenges or lead psychiatrists to effectively treat these issues.

Idiopathic means of unknown cause… except that in the ICD sense of the term they at least know the problem is physical. That is a major step in the right direction.

I know what has been the most helpful for my mentally-healthy daughter emotionally as well as treatment-wise -- the non-“mental” diagnosis… the entire list of physical issues. At least, then, each of those physical issues could be addressed resulting in her becoming symptom-free.

And, staying away from the term "mental" illness as if it were somehow different from just ILLNESS -- she can live without the stigma and lowered self-esteem that term provokes. After all, she had no psychological / mental problem to begin with.

The DSM-IV diagnosis (or the ICD-9 in the "mental" section) never did all that for her.

[1] Kalaydjian, A.E., et al. “The gluten connection: the association between schizophrenia and celiac disease.” Acta Psychiatr Scand, Vol 113, No. 2, Feb. 2006. pp. 82-90 abstract

[2] Nasrallah, Henry A. "Diagnosis 2.0: Are mental illnesses diseases, disorders, or syndromes?" CurrentPsychiatry online, Dec. 22, 2008

[3] There are many articles on the topic that these illnesses are better served diagnosed with a generic medical diagnosis of "encephalopathy". Here are examples:
The concept of entero-colonic encephalopathy, autism and opioid receptor ligands  A. J. Wakefield et. al. Alimentary Pharmacology & Therapeutics Volume 16, Issue 4, pages 663–674, April 2002

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Last Updated: 12 October 2011


Anonymous said...

Wow! This is a very powerful statement from someone who obviously knows what she's talking about, having lived it.
My concern about the upcoming revision of the DSM is that it's being done in secret (according to the newspaper article). Having worked as a psychiatric nurse in a psychiatric hospital for more then 10 years, I firmly believe that the experiences and insights of families who have successfully found answers and treatments for their loved ones suffering from psychiatric symptoms MUST be considered and incorporated in the new revisions of the DSM.
There should be more PUBLIC debate and less secrecy in developing the DSM revisions.

Herb said...

You guys are being too tough on our medical and psychiatric prqactioners. In order for us human beings to understand something we have to break it into component parts even though the real world is a whole. Because we were built for that, it's easier. Now the really hard thing is to go in the other direction, to synthesize. That's why we have a lot more laboratory technicians than Nobel Laureates and why our textbooks refer to people who have come up with "Laws" and "Theories" rather than discoverers of a particular phenomenom. Also it takes time to break down ideologies such as religion and medical dogma (hell they are still contesting the Theory of Evolution. Just keep up the good work; one day they'll be changing the medical texts.

Beta Mother said...

Really interesting post. As a psych student I'm just learning about the DSM IV and the ICD-10 - many thanks for great info which is highly relevant to current topic and has broadedened my understanding of the differences between the two publications.