Commentary
Diagnostic and Statistical Manual of Mental Disorders: The Solution or the Problem? Michael I. Reiff, MD,* Heidi M. Feldman, MD, PhD†
T
he 2013 publication of the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-5)1 has just been released. The proceeding months were filled with apprehension in anticipation of changes. The publication has been met with controversies and critiques. This editorial is an opportunity to reflect on the use of the DSM by primary care and developmental behavioral pediatricians. The discussion is critical because the American Academy of Pediatrics and other practice guidelines for both attention-deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) rely heavily on meeting DSM criteria as a requirement for diagnosis. One important issue is what the changes to DSM-5 might do to the prevalence of these and other disorders in children and adolescents. Reflecting back to the transition from DSM-3-R to DSM-4, Wolraich et al2 found that teacher-reported prevalence rates for ADHD rose from 7.3% using DSM-3-R criteria to 11.4% using the DSM-4. In the development of the DSM-5, there was some hope that the diagnostic criteria for ASD might be clearer and the prevalence might decline. What will happen with this transition? How will we approach families who either lose a diagnosis and therapeutic services linked to it, or alternatively, suddenly receive a diagnosis that was deemed inaccurate or inappropriate only a few months before? In an attempt to mitigate this issue with regard to ASD, the DSM-5 states that a child with a well-established DSM-4 diagnosis of autistic disorder, Asperger disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of ASD. The confounding contradiction then arises that a child who met DSM-4 criteria but not DSM-5 criteria would receive an ASD diagnosis, but a child who is being presently assessed who meets criteria for DSM-4 criteria but not DSM-5 should not be diagnosed with ASD.
(J Dev Behav Pediatr 35:68–70, 2014) Index terms: DSM-5, mental health, International Classification of Functioning Disability and Health, disability. From the *Department of Pediatrics, School of Medicine, University of Minnesota, Minneapolis, MN; †Department of Pediatrics, Stanford University School of Medicine, Stanford, CA. Received October 2013; accepted October 2013. Disclosure: The authors declare no conflict of interest. Address for reprints: Michael I. Reiff, MD, School of Medicine, University of Minnesota, Minneapolis, MN 55455. Copyright Ó 2014 Lippincott Williams & Wilkins
68 | www.jdbp.org
Another primary issue is how this change to DSM-5 will influence our conceptualization of these disorders and our clinical practice. May we find ourselves defending the new system and arguing with families, teachers, or therapists? May we find ourselves denigrating the system because it does not gibe with our clinical impressions? How will we reconcile such conflicts? Pierre3 has reflected on parallels between DSM changes and the taxonomy change for the planet Pluto. In 2006, astrophysicists and astronomers held a conference debating whether Pluto was a planet. Although Pluto’s designation was changed to a “dwarf planet,” we believe that Pluto is still there in exactly the same form, even after its demotion. Many of us have begun to think about these DSM “disorders” as equivalent to medical diagnoses. However, medical diagnoses can most often be confirmed by laboratory tests or imaging studies that support our clinical impressions (externally validating variables). Certainly, none of us would start treating the behavioral description of drinking too much, voiding too much, eating too much, and losing weight with insulin. Yet this is exactly the position we are in with diagnoses out of the DSM. As a starter, the DSM diagnoses lack substantial scientific evidence that they are discrete entities and cannot be verified by biological measures. Some of the diagnoses new to DSM-5 like the new Social (Pragmatic) Communication Disorder, although it has been manufactured to fill the gap for children falling short on meeting the new, more stringent criteria for autism, lacks almost any supporting evidence as a disorder independent of autism or specific language impairment. So what is a disorder? Pierre3 has described DSM disorders as “constructs [whose] chief utility is as a good enough rough guide for clinical work.” In the DSM, these constructs are of variable validity. Coexisting conditions or diagnostic comorbidity is the rule rather than the exception in both DSM-4-TR4 and International Statistical Classification of Diseases, 10th Revision.5 The inability of the DSM to account for all symptoms of an individual by a single diagnosis supports the contention that it is meant to be a heuristic document that describes disorders in a way that allows communication across mental health professionals and/or public health officials or health insurers. It is not intended to describe individuals.6 Martin3 asserts that “nosology destroys narrative, and where formerly our patients were more appropriately -likened to novels, they are now become, for the ease of illiterate overlords [payers?], more like newspapers” or maybe even shopping lists. This point particularly rings Journal of Developmental & Behavioral Pediatrics
true for those of us who are primary care or developmental behavioral pediatricians. We favor the approach of looking at potential disorders in the context of the child, including her strengths and weaknesses, the family, and the surrounding community, including their structures, supports, beliefs, and culture. Whereas a 15–20 minutes of office visit is largely insufficient to lead to a determination of whether a child meets certain DSM criteria for even uncomplicated ADHD, it falls miserably short of allowing a thoughtful and comprehensive clinician to gain understanding of the big picture to individualize a treatment plan that takes the whole child, the family, and the environment into account. With that approach, we are reduced to simple formulations to treat complicated conditions. In the case of ADHD, for example, we have no good studies that show that medication treatment alone over time leads to improvement in functional outcome. In this context, we propose that what developmentalbehavioral pediatricians should really be treating is children in context, their problems and impairments in functioning, and not simply their “disorders.” This concept is embedded in the International Classification of Functioning, Disability and Health.7 This manual, a product of the World Health Organization, describes a systematic approach to analyzing a broad range of functional consequences of disorders, including “mental health” conditions, such as ASD and ADHD, including effects on body function and structures, activities of daily living, and participation in social and community activities. Isn’t this broad view really our approach? So what restrains us from practicing in a way that deemphasizes what condition a child has in favor of what challenges, problems, and functional limitations the child experiences? Let’s “invite the 800-pound gorilla to this epistemological party.”3 The disorders approach is useful to insurers, who now can clearly decide which cases they will pay for and which they will not. It serves drug companies who can push medications, now directly to the public, for such common experiences as social anxiety. It serves many other parts of the health care industry. Isn’t it this change from medicine as a profession to medicine as an industry that has forced changes in our approach (although hopefully not our philosophy) over the years? In this system, the diagnosis is an entryway into payment and to services. It is the diagnosis that gets reimbursed, not the time and thought that it takes to create a comprehensive individual plan emanating from the International Classification of Functioning, Disability and Health model. It is the diagnosis that presupposes the treatment rather than inspiring a broad view using what Bronfenbrenner called an ecological systems model that starts with the individual and then considers the microsystem (family, etc), the mesosystem, the exosystem (neighbors, community services), the macrosystem (cultural attitudes and etiologies), and the chronosystem (all these over time). So in fact, considering the gorilla, it is the diagnosis, rather than the functional disabilities, that drives access Vol. 35, No. 1, January 2014
to medications and treatment programs. This approach can substantially limit who receives these therapeutic services, rather than assuring that they are allocated to all who need them. This approach often excludes from service the children with mild manifestations who are extremely likely to benefit from these services. The role of the drug companies is another long story to save for another time—except to recall that when new disorders are described, or when new DSM criteria increase the prevalence of disorders, there is usually a substantial burst in medication demand, production, and corporate profits. For example, 1 year before the publication of DSM-4, in 1993, about 5,000 kg of methylphenidate was being produced per year. By 1996, the production was almost 12,000 kg.8 On May 21st of this year, Express Scripts, a pharmacy-benefit manager, published its annual report on American drug trends. The company expects broad drug spending for common chronic ailments, such as asthma and hypertension, to fall by 4% over the next 3 years. However, sales of attentiondisorder drugs are projected to jump by 25% over the same period, anticipating a spike in prescriptions among adults. Diagnoses drive more than just medical care. They are also used to determine what should be treated, how to treat it, whether screening should be done, what school services should be offered and to whom, what research should be funded . etc. They affect children and families who are already struggling or suffering to make sense of issues and differences in their lives. So, how do we responsibly use the diagnoses in the DSM-5? If we are strict about not diagnosing a condition unless a child or adolescent meets strict DSM criteria, are we then creating a situation in which individuals who do not meet criteria, even though they have high levels of functional disability are ineligible for treatments and services? Consider what Judith Rapoport, a well-known and respected researcher at the National Institute of Mental Health told Richard Grinker, a cultural anthropologist who studies autism, “We’ll call that kid a zebra if he needs to be called a zebra to get the educational and other services that he needs and deserves.9” Where does this diagnostic gerrymandering put us as we try to practice evidence-based medicine in our present environment? Where does this leave our science as we look back in health services research to evaluate the effectiveness of treatments? The publication of the DSM-5 comes at a critical time for our profession. We hope that this editorial can catalyze a serious and substantial discussion among primary care and developmental behavioral pediatricians about when and how to use the DSM-5 responsibly. We need to practice medicine in a manner that is compatible with our values and ethics and the very reasons we went into this field. We need an approach that is helpful to children and families and not one that simply layers multiple diagnostic labels on frightened children and families without explaining the implications of the various terms. We must think about how to bring together clinical developmental medicine and mental health care with public health approaches © 2014 Lippincott Williams & Wilkins
69
that can teach us about regional differences: disparities in access, presentation, and response to treatment. We need to carefully consider integrating the parochial US DSM-5 with the approaches, such as the International Classification of Functioning, Disability and Health, used in other developed countries and worldwide. We must consider challenging the entire enterprise, creating a meaningful substitute and not merely dutifully applying criteria to determine whether a child has 1 or another narrow diagnoses.
4.
5.
6.
7.
REFERENCES 1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Publishing; 2013. 2. Wolraich ML, Hannah JN, Pinnock TY, et al. Comparison of diagnostic criteria for attention-deficit hyperactivity disorder in a county-wide sample. J Am Acad Child Adolesc Psychiatry. 1996; 35:319–324. 3. Phillips J, Frances A, Cerullo MA, et al. The six most essential questions in psychiatric diagnosis: a pluralogue part 1: conceptual
70 Commentary
8.
9.
and definitional issues in psychiatric diagnosis. Philos Ethics Humanit Med. 2012;7:1–29. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, DC: American Psychiatric Association; 2000. World Health Organization. The ICD-10 Classification of Mental and Behavioural Disorders. Geneva, Switzerland: World Health Organization; 1993. First MB, Mutually exclusive versus co-occurring diagnostic categories: the challenge of diagnostic comorbidity, Psychopathology. 2005;38:206–210. World Health Organization. International Classification of Functioning Disability and Health—Version for Children and Youth: ICF-CY. Geneva, Switzerland: World Health Organization; 2007. The President’s Council on Bioethics. Staff background paper: Human flourishing, performance enhancement, and ritalin. Meeting of The President’s Council on Bioethics, December 12-13, 2002. Washington, DC. Available at: http://bioethics.georgetown. edu/pcbe/background/humanflourish.html. Accessed November 27, 2013. Grinker R. Unstrange Minds: Remapping the World of Autism. New York, NY: Basic Books; 2007.
Journal of Developmental & Behavioral Pediatrics
Diagnostic and Statistical Manual of Mental Disorders: The Solution or the Problem? Michael I. Reiff, MD,* Heidi M. Feldman, MD, PhD†
T
he 2013 publication of the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-5)1 has just been released. The proceeding months were filled with apprehension in anticipation of changes. The publication has been met with controversies and critiques. This editorial is an opportunity to reflect on the use of the DSM by primary care and developmental behavioral pediatricians. The discussion is critical because the American Academy of Pediatrics and other practice guidelines for both attention-deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) rely heavily on meeting DSM criteria as a requirement for diagnosis. One important issue is what the changes to DSM-5 might do to the prevalence of these and other disorders in children and adolescents. Reflecting back to the transition from DSM-3-R to DSM-4, Wolraich et al2 found that teacher-reported prevalence rates for ADHD rose from 7.3% using DSM-3-R criteria to 11.4% using the DSM-4. In the development of the DSM-5, there was some hope that the diagnostic criteria for ASD might be clearer and the prevalence might decline. What will happen with this transition? How will we approach families who either lose a diagnosis and therapeutic services linked to it, or alternatively, suddenly receive a diagnosis that was deemed inaccurate or inappropriate only a few months before? In an attempt to mitigate this issue with regard to ASD, the DSM-5 states that a child with a well-established DSM-4 diagnosis of autistic disorder, Asperger disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of ASD. The confounding contradiction then arises that a child who met DSM-4 criteria but not DSM-5 criteria would receive an ASD diagnosis, but a child who is being presently assessed who meets criteria for DSM-4 criteria but not DSM-5 should not be diagnosed with ASD.
(J Dev Behav Pediatr 35:68–70, 2014) Index terms: DSM-5, mental health, International Classification of Functioning Disability and Health, disability. From the *Department of Pediatrics, School of Medicine, University of Minnesota, Minneapolis, MN; †Department of Pediatrics, Stanford University School of Medicine, Stanford, CA. Received October 2013; accepted October 2013. Disclosure: The authors declare no conflict of interest. Address for reprints: Michael I. Reiff, MD, School of Medicine, University of Minnesota, Minneapolis, MN 55455. Copyright Ó 2014 Lippincott Williams & Wilkins
68 | www.jdbp.org
Another primary issue is how this change to DSM-5 will influence our conceptualization of these disorders and our clinical practice. May we find ourselves defending the new system and arguing with families, teachers, or therapists? May we find ourselves denigrating the system because it does not gibe with our clinical impressions? How will we reconcile such conflicts? Pierre3 has reflected on parallels between DSM changes and the taxonomy change for the planet Pluto. In 2006, astrophysicists and astronomers held a conference debating whether Pluto was a planet. Although Pluto’s designation was changed to a “dwarf planet,” we believe that Pluto is still there in exactly the same form, even after its demotion. Many of us have begun to think about these DSM “disorders” as equivalent to medical diagnoses. However, medical diagnoses can most often be confirmed by laboratory tests or imaging studies that support our clinical impressions (externally validating variables). Certainly, none of us would start treating the behavioral description of drinking too much, voiding too much, eating too much, and losing weight with insulin. Yet this is exactly the position we are in with diagnoses out of the DSM. As a starter, the DSM diagnoses lack substantial scientific evidence that they are discrete entities and cannot be verified by biological measures. Some of the diagnoses new to DSM-5 like the new Social (Pragmatic) Communication Disorder, although it has been manufactured to fill the gap for children falling short on meeting the new, more stringent criteria for autism, lacks almost any supporting evidence as a disorder independent of autism or specific language impairment. So what is a disorder? Pierre3 has described DSM disorders as “constructs [whose] chief utility is as a good enough rough guide for clinical work.” In the DSM, these constructs are of variable validity. Coexisting conditions or diagnostic comorbidity is the rule rather than the exception in both DSM-4-TR4 and International Statistical Classification of Diseases, 10th Revision.5 The inability of the DSM to account for all symptoms of an individual by a single diagnosis supports the contention that it is meant to be a heuristic document that describes disorders in a way that allows communication across mental health professionals and/or public health officials or health insurers. It is not intended to describe individuals.6 Martin3 asserts that “nosology destroys narrative, and where formerly our patients were more appropriately -likened to novels, they are now become, for the ease of illiterate overlords [payers?], more like newspapers” or maybe even shopping lists. This point particularly rings Journal of Developmental & Behavioral Pediatrics
true for those of us who are primary care or developmental behavioral pediatricians. We favor the approach of looking at potential disorders in the context of the child, including her strengths and weaknesses, the family, and the surrounding community, including their structures, supports, beliefs, and culture. Whereas a 15–20 minutes of office visit is largely insufficient to lead to a determination of whether a child meets certain DSM criteria for even uncomplicated ADHD, it falls miserably short of allowing a thoughtful and comprehensive clinician to gain understanding of the big picture to individualize a treatment plan that takes the whole child, the family, and the environment into account. With that approach, we are reduced to simple formulations to treat complicated conditions. In the case of ADHD, for example, we have no good studies that show that medication treatment alone over time leads to improvement in functional outcome. In this context, we propose that what developmentalbehavioral pediatricians should really be treating is children in context, their problems and impairments in functioning, and not simply their “disorders.” This concept is embedded in the International Classification of Functioning, Disability and Health.7 This manual, a product of the World Health Organization, describes a systematic approach to analyzing a broad range of functional consequences of disorders, including “mental health” conditions, such as ASD and ADHD, including effects on body function and structures, activities of daily living, and participation in social and community activities. Isn’t this broad view really our approach? So what restrains us from practicing in a way that deemphasizes what condition a child has in favor of what challenges, problems, and functional limitations the child experiences? Let’s “invite the 800-pound gorilla to this epistemological party.”3 The disorders approach is useful to insurers, who now can clearly decide which cases they will pay for and which they will not. It serves drug companies who can push medications, now directly to the public, for such common experiences as social anxiety. It serves many other parts of the health care industry. Isn’t it this change from medicine as a profession to medicine as an industry that has forced changes in our approach (although hopefully not our philosophy) over the years? In this system, the diagnosis is an entryway into payment and to services. It is the diagnosis that gets reimbursed, not the time and thought that it takes to create a comprehensive individual plan emanating from the International Classification of Functioning, Disability and Health model. It is the diagnosis that presupposes the treatment rather than inspiring a broad view using what Bronfenbrenner called an ecological systems model that starts with the individual and then considers the microsystem (family, etc), the mesosystem, the exosystem (neighbors, community services), the macrosystem (cultural attitudes and etiologies), and the chronosystem (all these over time). So in fact, considering the gorilla, it is the diagnosis, rather than the functional disabilities, that drives access Vol. 35, No. 1, January 2014
to medications and treatment programs. This approach can substantially limit who receives these therapeutic services, rather than assuring that they are allocated to all who need them. This approach often excludes from service the children with mild manifestations who are extremely likely to benefit from these services. The role of the drug companies is another long story to save for another time—except to recall that when new disorders are described, or when new DSM criteria increase the prevalence of disorders, there is usually a substantial burst in medication demand, production, and corporate profits. For example, 1 year before the publication of DSM-4, in 1993, about 5,000 kg of methylphenidate was being produced per year. By 1996, the production was almost 12,000 kg.8 On May 21st of this year, Express Scripts, a pharmacy-benefit manager, published its annual report on American drug trends. The company expects broad drug spending for common chronic ailments, such as asthma and hypertension, to fall by 4% over the next 3 years. However, sales of attentiondisorder drugs are projected to jump by 25% over the same period, anticipating a spike in prescriptions among adults. Diagnoses drive more than just medical care. They are also used to determine what should be treated, how to treat it, whether screening should be done, what school services should be offered and to whom, what research should be funded . etc. They affect children and families who are already struggling or suffering to make sense of issues and differences in their lives. So, how do we responsibly use the diagnoses in the DSM-5? If we are strict about not diagnosing a condition unless a child or adolescent meets strict DSM criteria, are we then creating a situation in which individuals who do not meet criteria, even though they have high levels of functional disability are ineligible for treatments and services? Consider what Judith Rapoport, a well-known and respected researcher at the National Institute of Mental Health told Richard Grinker, a cultural anthropologist who studies autism, “We’ll call that kid a zebra if he needs to be called a zebra to get the educational and other services that he needs and deserves.9” Where does this diagnostic gerrymandering put us as we try to practice evidence-based medicine in our present environment? Where does this leave our science as we look back in health services research to evaluate the effectiveness of treatments? The publication of the DSM-5 comes at a critical time for our profession. We hope that this editorial can catalyze a serious and substantial discussion among primary care and developmental behavioral pediatricians about when and how to use the DSM-5 responsibly. We need to practice medicine in a manner that is compatible with our values and ethics and the very reasons we went into this field. We need an approach that is helpful to children and families and not one that simply layers multiple diagnostic labels on frightened children and families without explaining the implications of the various terms. We must think about how to bring together clinical developmental medicine and mental health care with public health approaches © 2014 Lippincott Williams & Wilkins
69
that can teach us about regional differences: disparities in access, presentation, and response to treatment. We need to carefully consider integrating the parochial US DSM-5 with the approaches, such as the International Classification of Functioning, Disability and Health, used in other developed countries and worldwide. We must consider challenging the entire enterprise, creating a meaningful substitute and not merely dutifully applying criteria to determine whether a child has 1 or another narrow diagnoses.
4.
5.
6.
7.
REFERENCES 1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Publishing; 2013. 2. Wolraich ML, Hannah JN, Pinnock TY, et al. Comparison of diagnostic criteria for attention-deficit hyperactivity disorder in a county-wide sample. J Am Acad Child Adolesc Psychiatry. 1996; 35:319–324. 3. Phillips J, Frances A, Cerullo MA, et al. The six most essential questions in psychiatric diagnosis: a pluralogue part 1: conceptual
70 Commentary
8.
9.
and definitional issues in psychiatric diagnosis. Philos Ethics Humanit Med. 2012;7:1–29. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, DC: American Psychiatric Association; 2000. World Health Organization. The ICD-10 Classification of Mental and Behavioural Disorders. Geneva, Switzerland: World Health Organization; 1993. First MB, Mutually exclusive versus co-occurring diagnostic categories: the challenge of diagnostic comorbidity, Psychopathology. 2005;38:206–210. World Health Organization. International Classification of Functioning Disability and Health—Version for Children and Youth: ICF-CY. Geneva, Switzerland: World Health Organization; 2007. The President’s Council on Bioethics. Staff background paper: Human flourishing, performance enhancement, and ritalin. Meeting of The President’s Council on Bioethics, December 12-13, 2002. Washington, DC. Available at: http://bioethics.georgetown. edu/pcbe/background/humanflourish.html. Accessed November 27, 2013. Grinker R. Unstrange Minds: Remapping the World of Autism. New York, NY: Basic Books; 2007.
Journal of Developmental & Behavioral Pediatrics
