DSM-5 – Friend or Foe? Part 4

 

6. Over-Diagnosing Versus Under-Diagnosing

One of the biggest concerns for thousands of mental health providers around the world is that the DSM-5 broadens the definition of many mental disorders to the point where “almost everyone is on the brink of being diagnosed some kind of mental disorder and even more people will be over-medicated for ‘conditions’ that many consider normal, everyday behavior”. (Lloyd, 2013) Some express concerns that for all but severe mental issues, diagnoses have no value – when something tries to explain everything, it ends up explaining nothing – like calling a temper tantrum a Disruptive Mood Dysregulation Disorder. (Cambpell, 2013)

Which, on balance, is better – to have a diagnostic system that labels more and more people as ‘mentally ill’ or a diagnostic system that labels fewer people as ‘mentally ill’? Currently, the general field of medicine is arguing that over-diagnosis in general medicine is “actively harmful” (“Preventing Overdiagnosis,” 2013).

Davey discusses some causes, advantages, and disadvantages (Davey, 2013):

• With each successive revision of the DSM, more and more new diagnostic mental health disorders tend to be included – not because of discoveries of new disorders, but because the people who develop the DSM are worried about false negatives (i.e. the missed diagnosis or patient who doesn’t fit neatly into the existing categorizations). This leads to either more inclusive diagnostic criteria or more diagnostic categories.
• The experts seem relatively indifferent to false positives – patients who receive unnecessary diagnosis, treatment, and stigma – and so are less likely to be concerned about over-diagnosis.
• Some will benefit from over-diagnoses. The pharmaceutical industry is one. For example, the increased medicalization of bereavement and of worries following a stressful life event provides new markets for palliative medication.
• But this calculation that does not work alone for economical reasons, because a diagnosis entitles the person affected to a provision of medical care through the system, whose resources are limited.
• Hopefully someone, somewhere might sit down and carefully think through the consequences of over-diagnosis and the consequences of under-diagnosis in mental health provision in a balanced way.

Davey also notes: “In medicine, there is a rapidly growing tendency to medicalize risk factors for illness by indicating these too need to be treated – obvious examples include risk factors for heart disease and diabetes. And this is a process that both medicalizes and labels conditions that are often quite common and quite normal (e.g. many forms of hypertension). Yet DSM-5 itself had begun to identify prodromal states for diagnosis.” (Davey, 2013)

In an interview, Frances comments on the connection between psychiatry and the rest of medicine in a critical fashion: In American medicine, not just psychiatry, “there has been- – in the past thirty years – a tendency to think that we can do a kind of preventive medicine with very early screening tests for a number of diseases. The idea in DSM-5 was, if the rest of medicine is screening early; why shouldn’t we? …

What’s happening now, just in the last couple of years, is the realization that we are doing way too much screening in medicine and way to much preventative medicine. Very often, you will see that the effect of early diagnosis is to provide treatment and to do tests that are more dangerous than the disease itself would have been. Well, psychiatry is getting into this act late in the day at just the wrong time and with the best of intentions but probably the worst of unintended consequences.

And so a number of the different suggestions are for disorders that are much milder than the traditional psychiatric disorders – intending to pick up earlier in the course the sorts of problems that might develop into schizophrenia or dementia, and hoping that you could intervene early before the disease has fully announced itself and caused its damage.

But, in order to have a screening test – or a screening diagnosis that is useful – , you have to prove three things. One, that it is going to be accurate – if you are going to introduce a new diagnosis, you want it to be accurate. The second is intervention that will be really effective for it. It doesn’t make sense to be identifying something if you can’t do something about it. And, the third is intervention will be healthful and not harmful – that it won’t cause more side effects and more complications than whatever benefit it will provide.It turns out, for all of the suggestions being made in DSM 5, there is no way of making the diagnosis accurately for just the people who need it – that there will be what we call a huge false positive rate – that in order to pick out the person who might go on to have the problem, you’ll often be picking up maybe eight or nine people who wouldn’t. And, the intervention for them and the stigma for them

is unwarranted. … In psychiatry,

• we certainly don’t have the tools for an accurate diagnosis before the illness has declared itself.
• We don’t have interventions that have been proven to be helpful.
• And, the interventions that are likely to occur might actually be quite harmful.” (Kall, 2013)

Therefore, Frances believes that psychiatric diagnosis is facing a renewed crisis of confidence caused by diagnostic inflation as a result of introducing several high-prevalence diagnoses. (Frances, 2013 s)

Another perspective has been expressed, saying there is little reason to think that a new DSM will increase the prevalence of mental-disorder diagnoses, and less to think that we will ever really know how many people are sick. How many individuals qualify as mentally ill has more to do with how they are counted (what instruments are used to conduct studies) than with how many diagnoses are available: “The DSM-5 is not likely to change that. Nor will it necessarily lead to more drugging of the populace. Drug companies are sure to seize on new diagnostic labels to get lucrative indications for their drugs, which they will then advertise to consumers who will in turn request the drugs from their doctors. But that won’t necessarily translate into an increase in diagnoses.

Doctors don’t have to render diagnoses when they reach for the prescription pad. 72% of antidepressant prescriptions, for instance, are written in the absence of a psychiatric diagnosis. Indeed, disregarding the DSM’s particulars may be the industry standard. As one DSM-5 committee member told her colleagues, ‘If the clinician’s gut feeling is that the patient has the disorder, it’s appropriate for them to get it [the diagnosis].’ The DSM-5 may only provide doctors with a new manual to ignore.” (Greenberg, 2013)

“All of this is complicated by medicines that may not do what they promise to.” (Cooper, 2010) Research found that antidepressants are no more effective than sugar pills for individuals suffering mild to moderate depression. (Fournier et al., 2010)

The following opinion can be found too: “If more people are diagnosed with psychological disorders, it could lessen the stigma towards mental illness that still exists in our society and often prevents people from seeking the help they need. And since insurance companies require an official diagnosis to cover doctor visits, clinicians can now code in a broader spectrum of DSM disorders to help offset the cost for the patient.” (Le Vine, 2013)

7. Implementation of the DSM-5

Although there is no mandate requiring the use of the DSM-5 (Munson, 2013), and claim platforms in the United States rely on the ICD, the DSM-5 has been developed to “facilitate a seamless transition into immediate use by clinicians and insurers to maintain continuity of care”. (American Psychiatric Association, n. d. b)

The DSM-5 combines the first 3 DSM-IV-TR axes into one list that contains all mental disorders. While a single axis recording procedure was previously used for Medicare and Medicaid reporting, some insur¬ance companies required clinicians to report on the status of the DSM-IV-TR axes. Even though claim platforms in the United States rely on the ICD, the APA assumes that the elimination of the multi-axial system in the DSM may result in a delay while insurance companies update their claim forms and reporting procedures to accommodate the DSM-5 changes. (American Psychiatric Association, n. d. b) This might create disruption not just for the billing departments of insurance companies but for clinicians as well.

In the past, new editions of the DSM have had varying degrees of initial acceptance and utilization. Therefore, insurance companies, regulatory agencies and courts have a transition period. Given the increased learning curve for mental health practitioners and the computer processing adjustments that payors have to make, the DSM-5 utilization transition period may be longer than in the past. (Munson, 2013)

The APA advises clinicians to use the DSM-IV-TR diagnoses and codes as long as this is required by a specific company. Transition details are being developed with the CDC-NCHS (Centers for Disease Control, National Center for Health Statistics) and the CMS (Centers for Medicare and Medicaid Services, and private insurance agencies. “The APA is working with these groups with the expectation that a transition to DSM-5 by the insurance industry can be made by December 31, 2013.” (American Psychiatric Association, n. d. b)

Clinicians should check with individual insurance companies to see if and when the coverage for the new diagnoses will come into effect. Insurers are free to update and cover new diagnoses at their discretion, which could mean that some diagnoses will be slower than others to get put on their to-pay lists. (Nelson, 2013)

The Massachusetts General Hospital Psychiatry Academy, in collaboration with online education provider myCME.com, released a white paper on attitudes, perceptions and concerns about the DSM-5. The paper highlights a number of interesting findings:

• 42% of clinicians overall indicated they have a high level of anticipation about the release of the DSM-5.
• 67% of clinicians have some level of concern about understanding changes in diagnostic criteria.
• 40% of clinician indicated some level of concern that it will take time to understand changes in the DSM-5 and incorporate them into practice; a notably higher percentage of physicians say that they are very concerned (15%), compared with non-physicians (2%).
• The top five therapeutics areas of particular concern: bipolar disorder, autism spectrum disorders, depression, substance use disorders, and PTSD.
• 60% of clinicians feel the changes to the DSM-5 will have at least a somewhat significant impact on their clinical practice – more than a quarter of physicians expect a very significant impact.
• 47% of clinicians say they plan to look for information on the DSM-5 as soon as it’s released, and another 30% plan to look for information a short time later.
• 49% of clinicians plan to use online education as their preferred format to get information about the DSM-5, while nearly a quarter will turn to journals.

(Gorrindo, et al., 2013).

8. Summary and Conclusion

The impact of the DSM-5 revisions ripples throughout the mental health field, from diagnosis to treatment to overall mental health care services. Mainly because these changes affect the way clinicians define normal and abnormal when it comes to mental health, the new revised manual elicited polarized responses.

In summary, the DSM changed most significantly in regards to the following topics:

• Developmental focus for chapter order: The DSM-5 re-orders disorders according to the age they’re most likely to appear. This makes the DSM-5 congruent with the system used by the ICD.
• New section on areas that need further research: The DSM-5 includes 3 sections: an introduction with instructions on using the manual, a section with diagnoses and diagnostic criteria, and a new section with information on conditions that require additional research before they can be incorporated into the official diagnoses.
• Inclusion of International Classification of Diseases (ICD) codes: The DSM-5 includes equivalent ICD-9-Clinical Modification (CM) codes and equivalent ICD-10-CM codes.
• Removal of multiaxial system: DSM-5 combines what was known as Axes I, II, and III, with separate notations for psychosocial and contextual factors (formerly Axis IV) and disability (formerly Axis V).
• Move toward “dimensional” measures: While the DSM-5 still lists separate disorders, the revised manual also incorporates dimensional measures of severity for many disorders.
• Increased emphasis on culture and gender: The DSM-5 features greater attention to cultural factors that may affect diagnosis. In addition to tools for cultural assessment, a new section describes common cultural syndromes, and how they are expressed.
• Developmental focus for disorders: The disorders’ descriptions describe how they may present differently throughout the life span.
• Commitment to more frequent updating: The switch to an Arabic numeral in the manual’s name is more than just a design change. The idea is that there will be versions 5.1, 5.2 and 5.3. These editions can come along more frequently than they had in the past so that the manual can be more responsive to new research.
• Autism Spectrum Disorders: Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder (not otherwise specified) are now referred to as “autism spectrum disorder (ASD)”.
• Binge eating disorder has been formalized as a diagnosis.
• Disruptive mood dysregulation disorder has been included to diagnose children who exhibit persistent irritability and frequent episodes of behavior outbursts three or more times a week for more than a year.
• Excoriation (skin-picking) disorder has been added and was included in the Obsessive-Compulsive and Related Disorders chapter.
• Generalized anxiety disorder: The symptom duration and the number of symptoms have been reduced.
• Hoarding disorder has been added and was included in the Obsessive-Compulsive and Related Disorders chapter.
• Neurocognitive disorders were formerly found under delirium, dementia, and amnestic and other cognitive disorders, and these disorders are now divided into major and mild types.
• Personality disorders: The DSM-5 includes trait-specific methodology in a separate area of Section III.
• Posttraumatic stress disorder has been included in a new chapter on Trauma and Stressor Related Disorders. The diagnostic criteria consist of 4 diagnostic clusters instead of 3. The DSM-5 also provides guidelines for diagnosing PTSD in children and adolescents.
• Removal of bereavement exclusion: The exclusion criterion in DSM-IV, applied to people experiencing depressive symptoms following the death of a loved one, has been removed. Guidelines are provided to delineate the differences between grief and depression.
• Somatic symptom disorder: Somatization disorder, hypochondriasis, the 3 variants of pain disorder, and undifferentiated somatoform disorder were regrouped into somatic symptom disorder and illness anxiety disorder.
• Specific learning disorder broadens diagnostic criteria to represent distinct disorders, which interfere with the acquisition and use of oral language, reading, written language, or mathematics.
• Substance use disorder: Substance abuse and substance dependence have been combined into one overarching category called substance use disorder.

These revisions result in restructured assessments, reformulated diagnostic criteria, altered formulas for the reimbursement of care, and therefore changes in treatment patterns and strategies as the new manual is applied.

The creators of the DSM-5 stated that the new manual represents a movement toward increased cultural sensitivity, deeper client understanding, awareness of the neurobiology behind mental disorders, and the role of social and environmental forces in client symptoms. The new diagnostic system provides for clinicians a common language and framework to help with understanding and helping patients by discussing treatments, framing cases, proving medical necessity for reimbursements, justifying disabilities, etc. (Kupfer et al., 2013)

Critics of psychiatric diagnosis in general voiced their opposing position to the revised manual. (“Psychiatrists, MDs & Psychologists”, n. d.) Igniting a firestorm of controversy, opponents of the DSM-5 in particular do not believe that the revision process has been careful or open enough to produce a document that is trustworthy. (Gray, K. 2013)

The powerful and influential National Institute for Mental Health questions the validity of the revised manual. Instead of looking at symptoms, the agency wants to develop a more precise diagnostic system based on biological markers: “genetic, imaging, physiologic and cognitive data.” (Insel, 2013) Viewed from this perspective, the DSM-5 seems like an exercise in “rearranging the deck chairs on the Titanic.” (Zoellner, et al., 2011)

Allen Frances, the architect of the previous edition of the manual and one of the most outspoken critics of the revision, believes that the NIMH is reckless as it renounces all syndromal DSM diagnosis as invalid. “NIMH has nothing to offer now in its place except an oversold and undeliverable promise of some future strictly biological model of mental illness that will take decades to deliver – assuming it can ever be delivered at all.” (Frances, 2013 n)

Frances lists 10 potentially harmful changes in the DSM and suggests that clinicians not follow these or, at the very least, use them with extreme caution and attention to their risks, and that payers question whether some of these are suitable for reimbursement:

1. Disruptive mood dysregulation disorder: The DSM-5 turns temper tantrums into a mental disorder. This might exacerbate, not relieve, the already excessive and inappropriate use of medication in young children.
2. Normal grief becomes major depressive disorder, thus medicalizing and trivializing our expectable and necessary emotional reactions to the loss.
3. The everyday forgetting characteristic of old age might now be misdiagnosed as minor neurocognitive disorder, creating a huge false positive population of people who are not at special risk for dementia.
4. The DSM-5 might trigger a fad of adult attention deficit disorder, leading to widespread misuse of stimulant drugs for performance enhancement and recreation, and contributing to the already large illegal secondary market in diverted prescription drugs.
5. Excessive eating 12 times in 3 months is no longer just a manifestation of gluttony and the easy availability of really great-tasting food. The DSM-5 has instead turned it into a psychiatric illness called binge eating disorder.
6. First time substance abusers are lumped together with hardcore addicts in the new manual despite their very different treatment needs and prognosis and the stigma this might cause.
7. The DSM-5 has created a slippery slope, by introducing the concept of behavioral addictions, that eventually can spread to make a mental disorder of everything we like to do a lot.
8. The DSM-5 obscures the already fuzzy boundary between generalized anxiety disorder and the worries of everyday life. This might create millions of anxious new “patients” and expand the already widespread practice of inappropriately prescribing addicting anti-anxiety medications.
9. The DSM-5 has opened the gate even further to the already existing problem of misdiagnosis of PTSD in forensic settings.
10. The DSM-5 includes somatic symptom disorder (SSD). This new diagnosis might encourage a quick jump to the erroneous conclusion that someone’s physical symptoms are “all in the head”, and mislabel as mental disorders the normal emotional reactions that people understandably have in response to a medical illness.

(Frances, 2012 b)

Frances took responsibility for decisions in regards to the creation of the DSM-IV that already set too low a threshold for diagnosing mental disorder: They seemed to make sense at the time, but were exploited by drug companies in aggressive and misleading marketing campaigns. (Frances, 2013 k)

He also believes that “DSM-5 got off to a bad start and was never able to establish sure footing. Its leaders initially articulated a premature and unrealizable goal – to produce a paradigm shift in psychiatry. Excessive ambition combined with disorganized execution led inevitably to many ill conceived and risky proposals. … DSM-5 has neither been able to self correct nor willing to heed the advice of outsiders.” (Frances, 2012 b)

Frances also considers the new manual to be so “clunkily written, dense and dreadfully obscure that it is hard to believe that anyone will want to buy the DSM-5 to learn about psychopathology or abnormal psychology”. (Frances, 2013 j)

The controversy around the DSM-5 can be summarized in the following way: The revised manual …

• is the result of a secretive, closed, and rushed process that put publishing profits ahead of public welfare;
• is in many places scientifically unsound and statistically unreliable, and did not receive a much needed and widely requested external scientific review;
• is clinically risky because of many new and untested diagnoses and lowered diagnostic thresholds;
• will result in the mislabeling of mental illness in people who will do better without a psychiatric diagnosis;
• will result in unnecessary and potentially harmful treatment with psychiatric medication;
• will divert precious mental health resources away from those who most need them.

(International DSM-5 Response Committee, n. d.)

“Only one-third of severely depressed patients get any care and we have one million psychiatric patients languishing in prisons because they had insufficient access to care and housing in the community. As President Obama put it, it is now easier for the mentally ill to buy a gun than to get an outpatient appointment — tragic on both counts.” (Francis 2013, m)

Drug companies have taken advantage of the diagnostic inflation induced by the DSM in the past. Frances considers the conflict of interest of the people who worked on DSM-5 as intellectual, not financial. They are not trying to help the pharmaceutical industry. “This conflict of interest that results from the natural tendency of highly specialized experts to over value their pet ideas, to want to expand their own areas of research interest, and to be oblivious to the distortions that occur in translating DSM-5 to real life clinical practice (particularly in primary care where 80% of psychiatric drugs are prescribed). …

The APA’s deep dependence on the publishing profits generated by the DSM-5 business enterprise creates a far less pure motivation. There is an inherent and influential conflict of interest between the DSM-5 public trust and DSM-5 as a best seller.” (Frances, 2012 b) The last draft of the manual was approved and rushed prematurely to press with incomplete field-testing for one reason only – so that DSM-5 publishing profits can fill the big hole in APA’s projected budget and return dividends on the exorbitant cost of 25 million dollars that has been charged to the DSM-5 preparation. (Frances, 2012 b)

An international chorus of voices, many from within mainstream psychiatry, called for a boycott of the DSM-5. (Whitely, 2013) For example the International DSM-5 Response Committee submitted a statement of concern because the APA refused to submit the DSM-5 draft to external, independent review in order to address inconsistencies with the empirical literature and resolve potential conflicts of interest. (International DSM-5 Response Committee, n. d.)

Grohol spoke out against these concerns, saying: “The DSM-5 working groups are composed of 143 people by my count, 49 of which hold only a Ph.D., and only 90 of which hold an M.D. (16 of which also hold a Ph.D.). That’s a significantly more diverse representation of the psychological and psychiatric fields than we saw last time around. But disparagement is hardly helpful from a scientific standpoint. The ‘Open Letter’ petition was created, in private, by a three-member ad-hoc committee of a division of a competitive professional association, the American Psychological Association. And while I agree with some of the points raised in the petition, I have no reason to put my faith in these three people’s reading of the scientific literature over that of the 143 people in the working groups of the other APA.” (Grohol, n. d. a)

Frances sees is “another troubling danger that lurks in the opposite direction: collateral damage. The loss of faith in DSM-5 might hurt the more general credibility of psychiatry and all the other mental health professions. This is unfair and could have potentially tragic implications. DSM-5 is an aberration, a strange departure from common sense that in no way represents the core of the mental health arts and sciences. Psychiatric diagnosis and treatment are remarkably effective when they are done well and are provided for people who really need them.

My nightmare scenario – patients who desperately need medication refuse to take it because the DSM-5 follies have raised so many doubts. The delicate balance – we need to discredit those changes in DSM-5 that will lead to unnecessary diagnosis and treatment without discrediting the proper practice of psychiatry.” (Frances, 2013 i)

Frances concludes, “we badly need a conversation about a diagnostic system that is far too loose, a drug industry that is far too unregulated and a mental health system that is badly broken. … It is time for a Congressional investigation.” (Frances, 2013 k)

Some DSM supporters cast Frances and his fellow critics as an outspoken minority in the psychiatric world, claiming that their rhetoric is blown out of proportion. Grohol argues that these critics overestimate its influence on clinical practitioners. “The thing that critics don’t seem to take into account is that mental health professionals are not automatons, they’re not robots. They don’t just look a diagnosis up in a book and then apply the criteria without any subjectivity. That’s just going against everything we know.” (Toor, 2013)

In some articles, the authors point out that the DSM-5 is not worth all the hype: Most clinicians will not take the DSM-5 too literally because “people cannot fit neatly into a checkbox classification system”. (Farrell, 2013) Other articles remind us that the current battle represents a long-simmering conflict in psychiatry that goes public only at DSM revision time, but can be traced back to the late ’70s. (Dhar, 2013 b)

It has also been expressed that “the furor preceding the release of the DSM-5 is in contrast to the incremental changes to several diagnostic categories, which are derived from new research since its predecessor’s birth in 1990. While many of these changes are indeed controversial, they do reflect the intrinsic ambiguity of the extant literature. Additionally, this may be a mirror of the frustration of the field’s limited progress, especially given the false hopes at the dawn of the ‘decade of the brain’. In the absence of a coherent pathophysiology, the DSM remains no more than a set of consensus based operationalized adjectives, albeit with some degree of reliability. It does not cleave nature at its joints, nor does it aim to, but neither does alternate systems.

The largest problem with the DSM system is how it’s used; sometimes too loosely by clinicians, and too rigidly by regulators, insurers, lawyers and at times researchers, who afford it reference and deference disproportionate to its overt acknowledged limitations.” (Berk, 2013)

The future will tell us about the consequences of the DSM revision. Research, learning, and understanding of the categories and the disorders in the DSM-5 has moved from clinical trials to evaluation in real-time clinical practice and applied by professionals in various settings. Predictions of epidemic numbers of people diagnosed with and stigmatized by psychiatric conditions will be tested in the years to come. Will there be a “cruel paradox” that leads to a “misallocation of resources”, as Frances fears? (Frances, 2013 l)

Where Do We Go From Here?

Frances points out that the APA has been responsible for the diagnostic system for 100 years, having initially accepted the task when it was too unimportant for anyone else to care. “However, the DSM has since acquired perhaps too much real-world influence. … In the United States, we carefully monitor new drug development but do not have an effective system to vet the safety and efficacy of new psychiatric diagnoses. The problems associated with the DSM-5 prove that the APA should no longer hold a monopoly on psychiatric diagnosis. Another mechanism for revising the diagnostic system must be developed.” (Frances, 2013 s)

There is one upside to the controversy over the reference manual: Some experts feel it is a perfect opportunity to begin constructive conversations about the future of psychiatric diagnosis. (Lloyd, 2013) Frances also sees a “possible consolation from the otherwise depressing DSM-5 debacle – perhaps it will stimulate a vigorous discussion of the real strengths, but also serious weaknesses, of psychiatric diagnosis and treatment. The more that clinicians and patients know about psychiatric diagnosis, the greater will be its benefits, the fewer its harms.” (Frances, 2013 q)

In face of the controversies surrounding the DSM process, MOOC (Massive Open Online Conversation) was set up to provide an interactive website (http://discuss.thementalhealthmanual.com) to bring together concerned clinicians and the public in order to give voice to the many different perspectives about psychiatric diagnosis. This forum consists of about 15 channels, each one dedicated to one area of significant change or controversy in the DSM-5. “Suggestions for guidelines, practice standards, public policy, and research will hopefully emerge.” (Frances, 2013 q)

A group of psychiatrists also organized a discussion around what they consider six essential questions in further work on the DSM. “The six questions involve:

1. the nature of a mental disorder;
2. the definition of mental disorder;
3. the issue of whether, in the current state of psychiatric science, DSM-5 should assume a cautious, conservative posture or an assertive, transformative posture;
4. the role of pragmatic considerations in the construction of DSM-5;
5. the issue of utility of the DSM – whether DSM-III and IV have been designed more for clinicians or researchers, and how this conflict should be dealt with in the new manual; and
6. the possibility and advisability, given all the problems with DSM-III and IV, of designing a different diagnostic system.” (Phillips et al., 2012)

For Extended Bibliography and References, click here.

 
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