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1 DSM 5 Overview and Media Response Darrel A. Regier, M.D., M.P.H. Director, Division of Research and American Psychiatric Institute for Research and Education, American Psychiatric Association Vice Chair, DSM 5 Task Force Arlington, VA September 9, 2013 Carter Center Mental Health Program Atlanta, GA Conflicts of Interest Dr. Darrel A. Regier, Director of APIRE and Director of the Division of Research at the APA, oversees all Federal and industry sponsored research and research training grants in APIRE but receives no external salary funding or honoraria from any government or industry sources.

2 History of DSM-5 Development ICD-8-9 and DSM-II US-UK study: demonstrated need for common definitions (incorporated in semi-structured PSE interview) for clinicians to eliminate wide national variations in diagnosis. DSM-II had glossary in : Feighner Criteria 16 disorders, Renard Interview 1977 ICD-9:Glossary of symptom definitions

3 ICD-9 and DSM-III 1978 Spitzer et al. modified and expanded Feighner to create the Research Diagnostic Criteria (RDC) and SADS Interview 1980 DSM-III went beyond glossary of symptoms to explicit criteria sets based on RDC DSM-III and ICD-9 Impact on Diagnostic Instrument Development 1979 Robins et al. developed NIMH Diagnostic Interview Schedule (DIS) incorporated DSM-III criteria for use in ECA 1982 Spitzer et al. developed the Structured Clinical Interview for DSM (SCID) Emerged as a standardized instrument for clinical research in U.S. and abroad

4 Impact of DSM-III on International Collaboration ADAMHA-WHO Collaboration ( ) 14 international Task Forces examined approaches of national schools of psychiatry Copenhagen Conference, April 1982: 150 participants from 47 countries Resulted in joint WHO/ADAMHA/APA effort to develop DSM-IV and ICD-10; CIDI, SCAN, and IPDE; ICF was the next phase. Conceptual Development of DSM DSM-I Presumed etiology DSM-II Glossary definitions DSM-III Paradigm shift Explicit criteria (emphasis on reliability rather than validity) DSM-5 Dimensional, spectra, developmental, culture, impairment thresholds, living document DSM IV Requires clinically significant distress or impairment DSM-III-R Criteria broadened Most hierarchies dropped

5 2003 APIRE obtains $1.1M NIH conference grant for DSM/ICD dx research planning 13 Conferences over 5 years ( )

6 DSM-5 Conference Output 10 monographs published Dimensional Models of Personality Disorders Diagnostic Issues in Substance Use Disorders Diagnostic Issues in Dementia Dimensional Approaches in Diagnostic Classification Stress-Induced and Fear Circuitry Disorders Somatic Presentations of Mental Disorders Deconstructing Psychosis Depression and GAD Obsessive-Compulsive Behavior Spectrum Disorders Public Health Aspects of Psychiatric Diagnosis More than 200 journal articles published

7 DSM-5 Classification Structure DSM-5 Revisions: Rationales The strict categorical approach of DSM-IV failed to capture variations of disorders (e.g., atypical, subthreshold, & common comorbidities). A strict application of diagnostic criteria did not fit patient presentations resulting in overuse of the NOS designation. DSM-5 represents an opportunity to integrate cross-cutting symptomatic descriptions which better reflect the true presentation of disorders and may reduce reliance on NOS diagnoses.

8 DSM-5 Structure Section I: DSM-5 Basics Section II: Essential Elements: Diagnostic Criteria and Codes Section III: Emerging Measures and Models Appendix Index Section II: Chapter Structure A. Neurodevelopmental Disorders B. Schizophrenia Spectrum and Other Psychotic Disorders C. Bipolar and Related Disorders D. Depressive Disorders E. Anxiety Disorders F. Obsessive-Compulsive and Related Disorders G. Trauma- and Stressor-Related Disorders H. Dissociative Disorders J. Somatic Symptom and Related Disorders K. Feeding and Eating Disorders L. Elimination Disorders M. Sleep-Wake Disorders N. Sexual Dysfunctions P. Gender Dysphoria Q. Disruptive, Impulse-Control, and Conduct Disorders R. Substance-Related and Addictive Disorders S. Neurocognitive Disorders T. Personality Disorders U. Paraphilic Disorders V. Other Disorders Medication-Induced Movement Disorders and Other Adverse Effects of Medication Other Conditions That May Be a Focus of Clinical Attention

9 Section II: Chapter Structure Chapter groups represent the latest evidence on neuroscientific overlap between disorders, such as genetic vulnerability and familial risk Supported by largest genome-wide study of mental disorders to date (The Lancet, 2013), which identified shared polymorphisms between ASD, ADHD, schizophrenia, bipolar disorder, and major depressive disorder Section II: Chapter Structure Also reflects groups with personality trait vulnerabilities: of internalizing conditions (depressive disorders; anxiety disorders; obsessive-compulsive and related disorders; trauma and stressor-related disorders; dissociative disorders; somatic disorders feeding and eating disorders, sleep-wake disorders, and sexual dysfunctions) and externalizing conditions (disruptive, impulse control, and conduct disorders; substance-related and addictive disorders).

10 Section III: Content Section III: Emerging Measures and Models Assessment Measures Cultural Formulation Alternative DSM-5 Model for Personality Disorders Conditions for Further Study Cross-Cutting Issues in DSM-5

11 Dimensional Assessment in Psychiatric Diagnosis: Definition Assessment of factors not necessarily included in the diagnostic criteria but of high relevance to prognosis and treatment planning for most patients In DSM-5 specifically, we include: Level 1 dimensions Level 2 dimensions Dimensional severity ratings Dimensional rating of disability Level 1 Cross-Cutting Symptom Measure Calls attention to symptoms relevant to most, if not all, psychiatric disorders (e.g., mood, anxiety, sleep disturbance, substance use, suicide) Self-administered by patient 13 symptom domains for adults 12 symptoms domains for children 11+, parents of children 6+ Brief 1-3 questions per symptom domain Screen for important symptoms, not for specific diagnoses (i.e., cross-cutting )

12 Level 2 Cross-Cutting Measure Completed when the corresponding Level 1 item is endorsed at the level of mild or greater (for most but not all items, i.e., psychosis and inattention) Gives a more detailed assessment of the symptom domain Largely based on pre-existing, well-validated measures, including the SNAP-IV (inattention); NIDA-modified ASSIST (substance use); and PROMIS forms (anger, sleep disturbance, emotional distress) Diagnosis-Specific Severity Measures For documenting the severity of a specific disorder using, for example, the frequency and intensity of its component symptoms Can be administered to individuals with: A diagnosis meeting full criteria An other specified diagnosis, esp. a clinically significant syndrome that does not meet diagnostic threshold Some clinician-rated, some patient-rated

13 World Health Organization Disability Assessment Schedule (WHODAS 2.0) WHODAS 2.0 is the recommended, but not required, assessment for disability Corresponds to disability domains of ICF Developed for use in all clinical and general population groups Tested world-wide and in DSM-5 Field Trials 36 questions, self-administered with clinician review For Adult Patients Child version developed by DSM-5, not yet approved by WHO DSM-5 Media Coverage and Examples

14 Media Coverage: Autism Spectrum Disorder (ASD) NY State legislator (Tom Abinanti [D- Greenburgh] of New York) proposes ban on DSM-5 ASD diagnosis NY Times headline New Definition of Autism Will Exclude Many Specifically, 35% of high-functioning and Asperger disorder Subsequently quoted as New Criteria Will Deny Services to 65% of Individuals with Autism Concerns about ASD in DSM-5 Sensitivity has been sacrificed in order to improve specificity Merging Asperger disorder (and PDD- NOS) into ASD results in loss of identity and ignores uniqueness of Asperger diagnosis Pre-/post DSM-5 research studies won t be comparable

15 Sensitivity & specificity of proposed DSM-5 diagnostic criteria for ASD (McPartland JC, Reichow B, Volkmar FR) OBJECTIVE: This study evaluated the potential impact of proposed DSM-5 diagnostic criteria for autism spectrum disorder (ASD). METHOD: The study focused on a sample of 933 participants evaluated during the DSM-IV field trial; 657 carried a clinical diagnosis of an ASD, and 276 were diagnosed with a non-autistic disorder. Sensitivity and specificity for proposed DSM-5 diagnostic criteria were evaluated using field trial symptom checklists as follows: individual field trial checklist items (e.g., nonverbal communication); checklist items grouped together as described by a single DSM-5 symptom (e.g., nonverbal and verbal communication); individual DSM-5 criterion (e.g., social-communicative impairment); and overall diagnostic criteria. RESULTS: When applying proposed DSM-5 diagnostic criteria for ASD, 60.6% (95% confidence interval: 57%-64%) of cases with a clinical diagnosis of an ASD met revised DSM-5 diagnostic criteria for ASD. Overall specificity was high, with 94.9% (95% confidence interval: 92%-97%) of individuals accurately excluded from the spectrum. Sensitivity varied by diagnostic subgroup (autistic disorder = 0.76; Asperger's disorder = 0.25; pervasive developmental disorder-not otherwise specified = 0.28) and cognitive ability (IQ < 70 = 0.70; IQ 70 = 0.46). CONCLUSIONS: Proposed DSM-5 criteria could substantially alter the composition of the autism spectrum. Revised criteria improve specificity but exclude a substantial portion of cognitively able individuals and those with ASDs other than autistic disorder. A more stringent diagnostic rubric holds significant public health ramifications regarding service eligibility and compatibility of historical and future research. Another view of McPartland et al. Response from the Neurodevelopmental Disorders Work Group McPartland et al. utilized archived data from DSM-IV field trials, which were of very little relevance to DSM-5 criteria. The methodology employed to assess sensitivity and specificity had such significant limitations that the analysis is incapable of supporting the dramatic conclusions. The sample was not representative of, and thus not generalizable to, clinical and community populations.

16 Decision to include Asperger Syndrome & PDD-NOS within one ASD diagnosis Scientific validity Lack of specificity and sensitivity in separating the diagnoses Lack of accurate historical information about very early language development put emphasis on current speech (trainable) Overlap in samples when VIQ controlled Consideration of access to services Media Coverage: Bereavement Exclusion Kleinman Lancet essay on grief / petition from Dutch palliative care advocacy group Frances blog on Huffington Post Last Plea To DSM-5: Save Grief From the Drug Companies (January 7, 2013) Open letter from MISS Foundation, advocacy group for families grieving the loss of a child

17 Concerns about Removing the Bereavement Exclusion from DSM-5 Pathologizing grief and other normal reactions to loss Another attempt by psychiatry to prescribe medications for normal human conditions, whereas grieving individuals do not necessarily need psychiatric treatment Removal of the BE is not supported by research According to DSM-IV When the symptoms begin within 2 months of the death of a loved one and do not persist beyond these 2 months, the diagnosis of major depression should not be made, unless the symptoms Are associated with marked functional impairment Include certain conditional features morbid preoccupation with worthlessness suicidal ideation psychotic symptoms psychomotor retardation

18 Bereavement/MDE criteria note and footnote in DSM-5 Media Coverage: The Future of Psychiatric Diagnosis New York Times editorial: two alternatives for diagnosing mental disorders that would signal an advance over the previous DSM-IV criteria that have been in use for almost 20 years ( Shortcomings of a Psychiatric Bible ; May 11, 2013) n/sunday/shortcomings-of-a-psychiatricbible.html

19 Media Coverage: The Future of Psychiatric Diagnosis Joint statement from Insel and Lieberman The syndrome-based DSM-5 is the best available guide for clinical diagnosis at the present time, and the RDoC program is an essential research direction for the future NY Times ultimately agreed and endorsed DSM-5

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