Many readers of my previous blog listing the 10 worst suggestions in DSM 5 were shocked that I failed to mention an 11th dangerous mistake — that DSM-5 will harm people who are medically ill by mislabeling their medical problems as mental disorder. They are absolutely right. I apologize for my previous failure to attend to this danger and hope it is not now too late to influence the process.

Adding to the woes of the medically ill could be one of the biggest problems caused by DSM-5. It will do this in two ways: 1) by encouraging a quick jump to the erroneous conclusion that someone’s physical symptoms are ‘all in the head’; and 2) by mislabeling as mental disorders what are really just the normal emotional reactions that people understandably have in response to a medical illness.

UK health advocate, Suzy Chapman, has closely monitored every step in the development of DSM-5. Her website is the best available resource for finding just about everything you need to know about DSM-5 and ICD-11. Ms Chapman sent me a troubling email that summarizes where DSM-5 has gone wrong and the many harmful consequences that will follow. More details are available at: ‘Somatic Symptom Disorder could capture millions more under mental health diagnosis’ (http://wp.me/pKrrB-29B )

Ms Chapman writes:

…The DSM-5 Somatic Symptom Disorders Work Group is planning to eliminate several little used DSM-IV Somatoform Disorders and replace them instead with an extremely broad new category that is likely to be wildly overused (‘Somatic Symptom Disorder’ — SSD).

A person will meet the criteria for SSD by reporting just one bodily symptom that is distressing and/or disruptive to daily life and having just one of the following three reactions to it that persist for at least six months: 1) ‘disproportionate’ thoughts about the seriousness of their symptom(s); or 2) a high level of anxiety about their health; or, 3) devoting excessive time and energy to symptoms or health concerns.

Unless DSM-5 changes these incredibly over inclusive criteria, it will greatly increase the rates of diagnosis of mental disorders in the medically ill — whether they have established diseases (like diabetes, coronary disease or cancer) or have unexplained medical conditions that so far have presented with somatic symptoms of unclear etiology.

The diagnosis of mental disorder will be based solely on the clinician’s subjective and fallible judgment that the patient’s life has become ‘subsumed’ with health concerns and preoccupations, or that the response to distressing somatic symptoms is ‘excessive’ or ‘disproportionate,’ or that the coping strategies to deal with the symptom are ‘maladaptive’.

These are inherently unreliable and untrustworthy judgments that will open the floodgates to the overdiagnosis of mental disorder and promote the missed diagnosis of medical disorder.

The DSM-5 Work Group is taking a flying leap into the unknown. There are no published research data on the likely prevalence rates, clinical characteristics or treatment of ‘Somatic Symptom Disorder,’ or its validity and safety as a construct. Decisions to code or not to code will hang on the arbitrary and subjective perceptions of DSM end-users who often spend very little time with the patient and lack training in psychiatry.

The DSM-5 field trials produced results that should have scared off the Work Group. One in six cancer and coronary disease patients met the criteria for DSM-5 ‘Somatic Symptom Disorder.’ Do we really want to burden and stigmatize seriously ill people with an additional diagnosis of mental illness, just because they are worried about being sick and are vigilant about their symptoms? Might patients with life threatening diseases become reluctant to report new symptoms that might be early indicators of recurrence, metastasis or secondary disease — for fear of attracting a diagnosis of ‘SSD’?

The Work Group is not proposing to classify Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and Fibromyalgia within the DSM-5 ‘Somatic Symptom Disorders’ section, but these patients and others with conditions like chronic Lyme disease, interstitial cystitis, Gulf War illness and chemical injury will now become particularly vulnerable to misdiagnosis with a DSM-5 mental health disorder. In the field trials, more than one in four of the irritable bowel and chronic widespread pain patients who comprised the ‘functional somatic’ study group were coded for ‘Somatic Symptom Disorder.’

To meet requirements for Somatization Disorder (300.81) in DSM-IV, a considerably more rigorous criteria set needed to be fulfilled. There had to be a history of many medically unexplained symptoms before the age of thirty, resulting in treatment sought or psychosocial impairment. The diagnostic threshold was set high — a total of eight or more medically unexplained symptoms from four, specified symptom groups, with at least four pain and two gastrointestinal symptoms.

In DSM-5, the requirement of eight symptoms is dropped to just one. And the requirement of ‘medically unexplained’ symptoms is replaced by much looser and more subjective ‘excessive thoughts, behaviors and feelings’ and the clinician’s perception of “dysfunctional illness belief’ or ‘excessive preoccupation’ with the bodily symptom.

That, and a duration of at least six months, is all that is required to tick the box for a bolt-on diagnosis of a mental health disorder – Colorectal cancer + SSD; Angina + SSD; Type 2 diabetes + SSD; IBS + SSD.

I would like to put to Dr Dimsdale: what percentage increase in mental health diagnoses across the entire disease spectrum is estimated to result from implementation of his group’s ad hoc proposals and has he also considered the increased costs to U.S. health care providers and payers?

Incautious, inept misapplication of these highly subjective and catch-all criteria will likely result in frequent inappropriate psychiatric diagnosis with far-reaching implications for both the health care industry and diverse patient populations. Harms include:

• Stigma

• Missed diagnoses through failure to investigate new or worsening somatic symptoms.

• Patients will be prescribed inappropriate psychotropic drugs with consequent side effects, complications, and costs.

• There may be limits imposed on the types of medical tests and treatments offered for patients misdiagnosed as having a mental disorder.

• Misdiagnosed patients may be disadvantaged in employment, medical and disability reimbursement.

• An additional diagnosis of ‘SSD’ in a patient’s medical history may negatively influence decisions made by agencies involved with social and medical services, disability adaptations, education and workplace accommodations.

• An inaccurate SSD diagnosis will skew the person’s view of herself and her illness and perceptions of family and friends.

• In multi-system diseases like Multiple Sclerosis, Behçet’s syndrome or Systemic lupus, it can take several years before a diagnosis is arrived at. In the meantime, patients with chronic, multiple somatic symptoms who are still waiting for a diagnosis would be vulnerable to misdiagnosis as psychiatrically ill.

• DSM-5 allows for a diagnosis of ‘Somatic Symptom Disorder’ when a parent is considered ‘excessively concerned’ about a child’s symptoms. Families caring for children with any chronic illness may be placed at risk of wrongful accusation of ‘over-involvement’ with their child’s symptomatology or of encouraging ‘sick role behavior.’ By what means will a practitioner accurately assess an individual’s response to illness within the context of the patient’s personal, family and economic circumstances and reliably determine what might be considered ‘excessive preoccupation’ versus a positive coping strategy for that patient and family?

• The burden of the DSM-5 changes will fall particularly heavily upon women who are more likely to be casually dismissed when presenting with physical symptoms and much more likely to receive inappropriate antidepressants and anti anxiety medications for them.

The Work Group is well aware that patients, families, caregivers and advocacy organizations are strongly opposed to the DSM-5 changes. During the second DSM-5 public review, the ‘Somatic Symptom Disorders’ proposals attracted more responses than almost any other category.

At the APA’s 2012 Annual Meeting, Work Group Chair, Joel Dimsdale, MD, admitted his committee has struggled from the outset with the ‘SSD’ criteria set. But rather than revising in favor of less inclusive requirements or subjecting the entire section to independent, external scientific review, the Work Group’s puzzling response has been to lower the threshold even further from ‘at least two from the B type criteria’ to ‘at least one’ — placing even more medical patients at grave risk of attracting an inappropriate mental health diagnosis.

Despite the APA Trustees signing off on DSM-5, work on specific wording is still not complete. Psychiatric and non psychiatric clinicians, primary care practitioners and specialists, allied health professionals, psychologists, counselors, social workers, medical lawyers and patient advocacy organizations all need to look very hard and quickly at these proposals, consider their safety and the implications of an additional diagnosis of ‘SSD,’ and weigh in vigorously to the Work Group Chair with a call for urgent revision of this section… while there is still time.

Ms Chapman has provided a devastating and compelling critique. It is crucial that DSM-5 tighten its over-inclusive wording to prevent what could otherwise be the wholesale dismissal of real medical symptoms as psychiatric illness — leading to missed diagnoses, incorrect treatment, stigma, and patients understandably feeling greatly misunderstood.

I first became personally and painfully aware of the risks of misdiagnosis of somatic symptoms when, as a new psychiatric resident, I treated a man for depression for two months before discovering that his problems were in fact caused by the brain tumor I had previously missed.

The golden rule: an underlying medical illness or medication side effect has to be ruled out before ever deciding that someone’s symptoms are caused by mental disorder. And the underlying medical illness may take time to declare itself. Uncertainty is hard to live with, but much better than jumping to false and risky conclusions.

The boundary between medical and psychiatric illness is inherently difficult to draw, especially since many psychiatric disorders do present with prominent somatic symptoms that are often mistaken for medical illness. Best example — people with panic attacks often get far too many medical tests for the dizziness, shortness of breath, and palpitations that are really just part of the hyperventilation caused by the panic attack. And the emotional distress some people have in reaction to real or feared illness does sometimes get out of all proportion enough to require psychiatric attention.

But there are serious risks attached to over-psychologizing somatic symptoms and mislabeling the normal reactions to being sick — especially when the judgments are based on vague wording that can’t possibly lead to reliable diagnosis. DSM-5 as it now stands will add to the suffering of those already burdened with all the cares of having a medical illness.

DSM-5 must emphasize that physical symptoms deserve the respect of a thorough work-up before assuming their cause is psychiatric. And people with defined medical illnesses should not be casually mislabeled as also mentally ill just because they are upset about being sick.

There is a possible solution to the problems we have identified. Somatic Symptom Disorder should be removed from the main body of DSM-5 that is meant to describe the various mental disorders. Instead, unexplained physical symptoms or problematic responses to illness should be covered in the V Code section of the manual that includes Other Conditions That May Be A Focus of Clinical Attention. This would remove the stigma and risks of mislabeling somatic concerns as mental disorders, while still providing clinicians with a code to describe the presentation. Second best solution — tighten the wording of the criteria set to make it less wildly over inclusive. As Ms Chapman points out, time is running out because DSM-5 is being rushed to press half-baked.

Allen Frances is Professor Emeritus at Duke University and former Chair of its Department of Psychiatry. He was Chair of the DSM IV Task Force. This post first appeared at the Huffington Post.

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2 Responses for “Mislabeling Medical Illness”

  1. Thank you Dr. Frances and Ms Chapman for bringing attention to the damage which the DSM-5 seems likely to wreak upon hundreds of thousands of medical patients world wide. I am a volunteer moderator in one of 33 online communities for patients with rare disorders, under the umbrella of “Ben’s Friends”. Among thousands of chronic face pain patients with whom I have corresponded during 18 years, literally hundreds have related being “written off” by family or by a medical doctor, with remarks like “your pain is caused by depression” or “you are over-dramatizing”. The SSD diagnosis seems likely to greatly multiply this outcome for an even wider spectrum of complex and mainstream illnesses like Fibromyalgia, Trigeminal Neuralgia, auto-immune disorders and many others.

    To better understand the implications of pending changes to the DSM, the Ben’s Friends communities have announced an outcomes survey to our 27,000 members. The survey is open to anyone who has been referred by a medical doctor to a psychiatric or psychological professional. Non-members of our community are welcome. Patient data will never be revealed or sold outside the Ben’s Friends organization. We will digest, analyze, and report results on our sites, to be offered to venues like the healthcare blog, Huffington Post, and Digital Journal. The survey may be found at https://www.surveymonkey.com/s/PF2TFQT

    All are welcome.
    Richard A. Lawhern, Ph.D.
    Volunteer Moderator, “Living With TN”

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