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Diagnosing the Diagnostic and Statistical Manual of Mental Disorders

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The Diagnostic and Statistical Manual of Mental Disorders, more commonly known as the DSM, is published by the American Psychiatric Association and aims to list and describe all mental disorders. The publication of DSM-V in 2013 brought many changes. Diagnosing the Diagnostic and Statistical Manual of Mental Disorders is written for all those who wonder whether the DSM-V now classifies the right people in the right way. It is aimed at patients, mental health professionals, and academics with an interest in mental health. Issues addressed include: * What are the main changes that have been made to the classification? * How is the DSM affected by financial links with the pharmaceutical industry? * To what extent were patients involved in revising the classification? * How are diagnoses added to the DSM? * Does medicalisation threaten the idea that anyone is normal? * What happens when changes to diagnostic criteria mean that people lose their diagnoses? * How important will the DSM be in the future?

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Chapter One - DSM-5: An Overview of Changes

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These days, as soon as one edition of the DSM goes to press, work on the next begins. The revision process that culminated in the publication of DSM-5 thus started long ago; with pipe dreams that finally came to nothing. An early publication, A Research Agenda for DSM-V (the Latin numerals only changed later) set out the ambitions (Kupfer, First, & Regier, 2002). A Research Agenda for DSM-V is an extraordinary document. The book doesn't consist of plans for DSM-5 but rather of plans for plans; a series of “white papers” outline research priorities in various areas relevant to psychiatric classification. It is a testament to the phenomenal success of the DSM that such a book should be published, and not only published but published in paperback; research proposals related to psychiatric classification now find a mass readership. The very term “white paper”, used by the editors to describe the chapters, is more normally associated with plans produced by the offices of nation states. Though partly bluster, such self-importance is basically justified. Given that millions of people worldwide suffer from mental disorders, and that the DSM diagnosis someone receives can determine whether and how they are treated, changes to the DSM can potentially affect the lives of as many people as changes in the policies of most countries.

 

CHAPTER ONE DSM-5: an overview of changes

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CHAPTER ONE

DSM-5: an overview of changes

T

hese days, as soon as one edition of the DSM goes to press, work on the next begins. The revision process that culminated in the publication of DSM-5 thus started long ago; with pipe dreams that finally came to nothing. An early publication, A Research Agenda for DSM-V (the Latin numerals only changed later) set out the ambitions (Kupfer, First, &

Regier, 2002). A Research Agenda for DSM-V is an extraordinary document. The book doesn’t consist of plans for DSM-5 but rather of plans for plans; a series of “white papers” outline research priorities in various areas relevant to psychiatric classification. It is a testament to the phenomenal success of the

DSM that such a book should be published, and not only published but published in paperback; research proposals related to psychiatric classification now find a mass readership. The very term “white paper”, used by the editors to describe the chapters, is more normally associated with plans produced by the offices of nation states. Though partly bluster, such selfimportance is basically justified. Given that millions of people worldwide suffer from mental disorders, and that the DSM diagnosis someone receives can determine whether and how they are treated, changes to the DSM can potentially affect

 

CHAPTER TWO Controversies of process: the DSM and the pharmaceutical industry

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CHAPTER TWO

Controversies of process: the DSM and the pharmaceutical industry

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henever a new condition is included in the DSM, or diagnostic boundaries are expanded, a new market for drugs is potentially created. The pharmaceutical industry thus has huge amounts at stake when the DSM is revised. Given that the DSM matters to the pharmaceutical companies, and given that these companies are rich and powerful, there is cause to monitor links between the drugs industry, the APA, and the DSM.

Let’s start with the money. A substantial proportion of the

APA’s revenue comes from pharmaceutical companies (in 2005,

$18 million of a total revenue of $61, down to about $7 million of $46 million by 2011) (APA, 2005, 2012a, 2012b). This money comes partly from advertising in APA journals, partly from sponsorship of the annual meeting, and partly through grants for “education, advocacy and research” (APA, 2012a).

Other medical specialties also have links with the pharmaceutical industry, and concern about potential conflicts of interest has become widespread (Kaplan, 2008). In line with actions taken by the professional bodies of other medical specialties, in recent years the APA has sought to institute a range of

 

Chapter Two - Controversies of Process: The DSM and the Pharmaceutical Industry

ePub

Whenever a new condition is included in the DSM, or diagnostic boundaries are expanded, a new market for drugs is potentially created. The pharmaceutical industry thus has huge amounts at stake when the DSM is revised. Given that the DSM matters to the pharmaceutical companies, and given that these companies are rich and powerful, there is cause to monitor links between the drugs industry, the APA, and the DSM.

Let's start with the money. A substantial proportion of the APA's revenue comes from pharmaceutical companies (in 2005, $18 million of a total revenue of $61, down to about $7 million of $46 million by 2011) (APA, 2005, 2012a, 2012b). This money comes partly from advertising in APA journals, partly from sponsorship of the annual meeting, and partly through grants for “education, advocacy and research” (APA, 2012a). Other medical specialties also have links with the pharmaceutical industry, and concern about potential conflicts of interest has become widespread (Kaplan, 2008). In line with actions taken by the professional bodies of other medical specialties, in recent years the APA has sought to institute a range of measures aimed at reducing and managing conflicts of interest (Kaplan, 2008). By 2009, drug money going into the APA had significantly declined (both as the APA set out to reduce the number of industry sponsored symposia at its meetings and as the economic downturn reduced advertising revenue) (Cassels, 2010). In addition to general concerns about the APA being so heavily reliant on funding from the pharmaceutical industry, there are more specific worries about links between industry and members of the committees revising the DSM. Individual committee members may have links with industry, such as receiving fees for speaking and consulting, receiving research grants, and having company shares. Many worry that such industry ties might influence committee members.

 

CHAPTER THREE Controversies of process: transparency and patient involvement

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CHAPTER THREE

Controversies of process: transparency and patient involvement

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hile the DSM is produced by the APA, transparency is bound to be problematic. The DSM is at one and the same time a document produced by a private organisation, and also one that has an impact on mental health practice worldwide. This creates a tension: the DSM is controlled by a smallish group of North American psychiatrists, but many would like to have an input into its creation.

In managing the systems via which the DSM is produced, the APA seeks to achieve a variety of mutually incompatible aims. The APA must make money from the DSM, protect the status of psychiatry relative to other mental health professions, maintain scientific respectability, ensure the cooperation of other mental health professionals in using the DSM, and maintain compatibility with the ICD (the classification published by the WHO). Some of these aims are best met by a revisionary process that is secret and dominated by the APA; others are best achieved by openness. Concerns about money and professional status encourage secrecy. Sales of the classification are essential to APA finances, and so it cannot afford for pirated copies of the manual to become too easily available.

 

Chapter Three - Controversies of Process: Transparency and Patient Involvement

ePub

While the DSM is produced by the APA, transparency is bound to be problematic. The DSM is at one and the same time a document produced by a private organisation, and also one that has an impact on mental health practice worldwide. This creates a tension: the DSM is controlled by a smallish group of North American psychiatrists, but many would like to have an input into its creation.

In managing the systems via which the DSM is produced, the APA seeks to achieve a variety of mutually incompatible aims. The APA must make money from the DSM, protect the status of psychiatry relative to other mental health professions, maintain scientific respectability, ensure the cooperation of other mental health professionals in using the DSM, and maintain compatibility with the ICD (the classification published by the WHO). Some of these aims are best met by a revisionary process that is secret and dominated by the APA; others are best achieved by openness. Concerns about money and professional status encourage secrecy. Sales of the classification are essential to APA finances, and so it cannot afford for pirated copies of the manual to become too easily available. Similarly the professional dominance of psychiatry can best be reaffirmed by making sure that psychiatrists are seen to be in the driving seat when it comes to constructing the classification. On the other hand, the manual will only be useful if it is widely adopted and is perceived to have credibility in the eyes of non-psychiatrists. This requires some level of cooperation from other mental health professionals and patient groups, which is best achieved via involvement and openness. Adding to the complexity, the APA cannot be understood as a purely self-interested organisation. The APA is complex, dynamic and internally conflicted. Some within the APA will always seek to “do the right thing”, and will support moves they believe to be in the interests of patients even if these go against the narrow interests of organised psychiatry.

 

Chapter Four - Issues of Content: The Birth of a New Diagnosis—Hoarding Disorder

ePub

This chapter focuses on one of the new additions to the DSM-5 that has garnered the least discussion. It will act as an illustration of how changes to the DSM come about, what impact they may have, and how even the least controversial of them can be problematic.

Hoarding disorder is included as a separate disorder for the first time in the DSM-5. In the DSM-IV, hoarding is mentioned only as a possible symptom of obsessive-personality disorder. The campaign to have hoarding upgraded to a recognised distinct disorder started some time ago. In 1996, a key researcher in the area, Randy Frost, together with Tamara Hartl, published a paper on hoarding that included criteria for the disorder's diagnosis. They suggested that clinical compulsive hoarding might be defined on the basis of

(1) the acquisition of, and failure to discard, a large number of possessions that appear to be useless or of limited value; (2) living spaces sufficiently cluttered so as to preclude activities for which those spaces were designed; and (3) significant distress or impairment in functioning caused by the hoarding. (Frost & Hartl, 1996, p. 341)

 

CHAPTER FOUR Issues of content: the birth of a new diagnosis—hoarding disorder

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CHAPTER FOUR

Issues of content: the birth of a new diagnosis—hoarding disorder

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his chapter focuses on one of the new additions to the

DSM-5 that has garnered the least discussion. It will act as an illustration of how changes to the DSM come about, what impact they may have, and how even the least controversial of them can be problematic.

Hoarding disorder is included as a separate disorder for the first time in the DSM-5. In the DSM-IV, hoarding is mentioned only as a possible symptom of obsessive-personality disorder.

The campaign to have hoarding upgraded to a recognised distinct disorder started some time ago. In 1996, a key researcher in the area, Randy Frost, together with Tamara Hartl, published a paper on hoarding that included criteria for the disorder’s diagnosis. They suggested that clinical compulsive hoarding might be defined on the basis of

(1) the acquisition of, and failure to discard, a large number of possessions that appear to be useless or of limited value; (2) living spaces sufficiently cluttered so as to preclude activities for which those spaces were designed; and (3) significant distress or impairment in functioning caused by the hoarding. (Frost & Hartl, 1996, p. 341)

 

CHAPTER FIVE Issues of content: the changing limits of autistic spectrum disorders

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CHAPTER FIVE

Issues of content: the changing limits of autistic spectrum disorders

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his chapter tells a story of changes in definitions, of prevalence rates, and of costs, all entwined. The headline news with regard to autism and related conditions is that

Asperger’s disorder has been removed as a standalone diagnosis from the DSM-5. Instead the new category autistic spectrum disorder (ASD) includes most of those previously diagnosed with autism as well as most of those previously diagnosed with

Asperger’s disorder. Also subsumed into ASD are the DSMIV diagnoses of Rett’s disorder—a rare genetic condition; and

PDD-NOS—pervasive developmental disorder not otherwise specified—a ragbag code for those with autism-like disorders who didn’t fulfil the criteria for any specific disorder.

Amongst researchers, whether Asperger’s should be considered to be a distinct condition, or merely the mildest form of autism, continues to be a source of contention (for a review see Matson & Wilkins, 2008). With the changes to the DSM-5, at least for the time being, those who advocate that there is no distinction between Asperger’s and high-functioning autism have won. The committees responsible for the change argue that the distinctions between Asperger’s, autism, and PDD-NOS imposed by the DSM-IV could not be reliably drawn. DSM-IV criteria for Asperger’s require that early language development

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Chapter Five - Issues of Content: The Changing Limits of Autistic Spectrum Disorders

ePub

This chapter tells a story of changes in definitions, of prevalence rates, and of costs, all entwined. The headline news with regard to autism and related conditions is that Asperger's disorder has been removed as a standalone diagnosis from the DSM-5. Instead the new category autistic spectrum disorder (ASD) includes most of those previously diagnosed with autism as well as most of those previously diagnosed with Asperger's disorder. Also subsumed into ASD are the DSM-IV diagnoses of Rett's disorder—a rare genetic condition; and PDD-NOS—pervasive developmental disorder not otherwise specified—a ragbag code for those with autism-like disorders who didn't fulfil the criteria for any specific disorder.

Amongst researchers, whether Asperger's should be considered to be a distinct condition, or merely the mildest form of autism, continues to be a source of contention (for a review see Matson & Wilkins, 2008). With the changes to the DSM-5, at least for the time being, those who advocate that there is no distinction between Asperger's and high-functioning autism have won. The committees responsible for the change argue that the distinctions between Asperger's, autism, and PDD-NOS imposed by the DSM-IV could not be reliably drawn. DSM-IV criteria for Asperger's require that early language development is normal, but as most children are only diagnosed in later childhood or adolescence, it can be hard for parents to remember whether this was the case (Happé, 2011). One study found that many children diagnosed with Asperger's disorder did not actually meet DSM-IV criteria (Williams et al., 2008), and another that whether a child would be diagnosed with Asperger's disorder or autism depended to a large extent on which clinic they visited (Lord et al., 2012). The aim now is to stop trying to “carve meatloaf at the joints” (Happé, 2011, p. 541). What may well turn out to be more important than the lumping together of diagnoses, however, is that the revisions to the DSM may affect the overall rates of those diagnosed with some sort of autism-related disorder.

 

CHAPTER SIX The field trials: DSM-5 and the new crisis of reliability

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CHAPTER SIX

The field trials: DSM-5 and the new crisis of reliability

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t time of writing, the DSM-5 has only just been published, and studies showing what differences the revisions have made to clinical practice, research, or service provision, are unavailable. The DSM-5 field trials are currently the best estimators of likely effects. This chapter focuses on one particular issue that has become controversial following the field trials: reliability.

The diagnosis that a patient receives should depend on the symptoms, rather than on who does the diagnosing. Suppose a patient sees a clinical social worker in the United States and is judged to have schizophrenia. If a reliable classification system is used then it should enable, say, a psychiatrist in Kenya, to decide on the same diagnosis.

When the DSM-III was published in 1980, it was presented as solving the problem of ensuring diagnostic reliability (APA,

1980, pp. 467–472). The story told was that while in the dark days of psychoanalytic dominance a patient judged neurotic by one therapist might well appear psychotic or normal to another, with the employment of the DSM-III patients could expect to be given the same diagnosis by all clinicians. Proof of

 

Chapter Six - The Field Trials: DSM-5 and the New Crisis of Reliability

ePub

At time of writing, the DSM-5 has only just been published, and studies showing what differences the revisions have made to clinical practice, research, or service provision, are unavailable. The DSM-5 field trials are currently the best estimators of likely effects. This chapter focuses on one particular issue that has become controversial following the field trials: reliability.

The diagnosis that a patient receives should depend on the symptoms, rather than on who does the diagnosing. Suppose a patient sees a clinical social worker in the United States and is judged to have schizophrenia. If a reliable classification system is used then it should enable, say, a psychiatrist in Kenya, to decide on the same diagnosis.

When the DSM-III was published in 1980, it was presented as solving the problem of ensuring diagnostic reliability (APA, 1980, pp. 467–472). The story told was that while in the dark days of psychoanalytic dominance a patient judged neurotic by one therapist might well appear psychotic or normal to another, with the employment of the DSM-III patients could expect to be given the same diagnosis by all clinicians. Proof of improvement was taken to be shown by a statistical measure, Cohen's kappa, which assesses the chances that two clinicians will agree on a diagnostic label. As DSM-III, and its successors, demonstrated “acceptable” values of kappa, the reliability problem was widely deemed to have been solved.

 

CHAPTER SEVEN The future

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CHAPTER SEVEN

The future

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hroughout this book I have shown how the DSM currently matters hugely. Even small changes can affect the lives of millions. In this last chapter, I look to the future. I shall explain why it is that I think the current dominance of the DSM is by no means guaranteed to continue.

In looking ahead, the key point to bear in mind is that we should not assume that the DSM will long continue to exist in anything like its current form.

At the outset, it is worth noting that is likely that the DSM-5 will be the last time that the DSM comes to be revised all in one go and published in book form. The system for numbering volumes has been shifted to facilitate the publication of more regular smaller-scale revisions as and when needed. Rather than

DSM-6 being published in 2030, we will have DSM 5.1, DSM

5.2, and maybe DSM 5.3.2.7 (Brauser, 2011; Verhoeff, 2010). This is all to the good. As mentioned previously, the current system meant that important copy editing errors in DSM-IV only came to be revised six years later. A process that allows for more frequent and easier updating can only be a good thing.

 

Chapter Seven - The Future

ePub

Throughout this book I have shown how the DSM currently matters hugely. Even small changes can affect the lives of millions. In this last chapter, I look to the future. I shall explain why it is that I think the current dominance of the DSM is by no means guaranteed to continue. In looking ahead, the key point to bear in mind is that we should not assume that the DSM will long continue to exist in anything like its current form.

At the outset, it is worth noting that is likely that the DSM-5 will be the last time that the DSM comes to be revised all in one go and published in book form. The system for numbering volumes has been shifted to facilitate the publication of more regular smaller-scale revisions as and when needed. Rather than DSM-6 being published in 2030, we will have DSM 5.1, DSM 5.2, and maybe DSM 5.3.2.7 (Brauser, 2011; Verhoeff, 2010). This is all to the good. As mentioned previously, the current system meant that important copy editing errors in DSM-IV only came to be revised six years later. A process that allows for more frequent and easier updating can only be a good thing.

 

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