Hoarding: Symptom of Anxiety Disorder, OCD Variant, or Distinct Diagnosis….or…Is DSM-V Becoming Too Cluttered?

1. Joint Session American College of Neuropsychiatrists and American Osteopathic Academy of Addiction Medicine Hoarding: Symptom of Anxiety Disorder, OCD Variant, or Distinct Diagnosis….or…Is DSM-V Becoming Too Cluttered? Gerald G. Osborn, D.O., M.Phil., dFACN, dLFAPA Professor & Chair, Dept. of Psychiatry and Behavioral Medicine Associate Dean for International Medicine Lincoln Memorial University-DeBusk College of Osteopathic Medicine

3. Hoarding: Experts and Notorious Cases • Dates back a century in the literature • Randy O. Frost, PhD, Professor, Smith College • Sanjaya Saxena, MD, Professor in Residence, UCSD Dept. Of Psychiatry • Gail S. Steketee, PhD, Dean and Professor, Boston University School of Social Work • Notorious cases • Brothers in NYC in 1947 • Agent Rose

4. Overview of Hoarding • “Anal character” • Approximately 2-5% of the population • 15-40% of OCD patients; disabling in 5% of them • Estimated prevalence is double that of OCD • Hoarding by animals – rodents, birds (curvids), insects • Genetic? Compulsive hoarding found to be 50% genetic in adults • Runs in families • Egosyntonic

5. Overview of Hoarding - Continued • Mild to life threatening • Contributed to death in fire in 6% of hoarding cases in a health department survey • Abnormally high levels of trauma or stressful life events – sometimes result in onset or exacerbation • Other traits – anxiety, perseveration, behavioral inflexibility, and working memory impairments • Worsens with age • Distress and disability often appear late and are often linked to interventions

6. Hoarding and OCD • Included in most measures of OCD symptom severity • Included in structured interviews and questionnaires for OCD symptoms • Yale-Brown Obsessive Compulsive Scale (Y-BOCS) • Most used • Inadequate for assessing hoarding • Obsessive-Compulsive Inventory-Revised (OCI-R)

7. Hoarding of Animals Source – Confessions: Animal Hoarding on Animal Planet • Comorbid neglect • Neuropsychological theories • Delusional model • Dementia model • Addictions model • Attachment model • OCD model

8. Animal Hoarding - Laws All states have laws - minimal care standards (e.g., food, shelter, veterinary care, and sanitary conditions) for animals Few states have laws specifically addressing animal hoarding – Hawaii, Vermont, Illinois, and others

9. Cases of Animal Hoarding Source: http://www.pet-abuse.com 170 cats; Powell, WY; 8-26-2010 700 animals (151 dogs, snakes, tortoises, 156 birds, cattle, etc.; ½ dead) ; Reddick, FL; 4-14-2010 35 cats; Brooklyn, NY; 1-18-2010 30 horses; Mitchell, OR; 6-23-2009 80 rabbits; San Francisco, CA; 6-23-2006

10. Shelley has Bird Lung Disease Source – Confessions: Animal Hoarding on Animal Planet

11. Jackie – 65 cats Source – Confessions: Animal Hoarding on Animal Planet

12. Severe Squalor Source: Hoarders on A&E Diogenes Syndrome • Self-neglect • Domestic squalor • Social withdrawal • Apathy • Compulsive hoarding • Lack of shame

13. Why Hoard? • Instrumental vs. sentimental • Fear of catastrophic consequences • Symmetry/ordering • Excessive checking rituals • Emotional and/or intrinsic value of possessions • Grief and loss • Developmental scarcity

14. DSM-IV-TR and ICD-10 • DSM-IV-TR • Core diagnostic criteria for obsessive-compulsive personality disorder (OCPD) since DSM III-R • “the inability to discard worn-out or worthless objects even when they have no sentimental value” • Extreme hoarding = consider diagnosis of obsessive-compulsive disorder (OCD) • May diagnose both OCPD and OCD • ICD-10 • Anankastic Personality Disorder • Does not include hoarding as a criterion

15. Diagnostic Criteria by Frost and Hartl, 1996 The acquisition of and failure to discard a large number of possessions that seem to be useless or of limited value Living spaces sufficiently cluttered so as to preclude activities for which those spaces were designed Significant distress or impairment in functioning caused by the hoarding Frost RO, Hartl TL. A cognitive-behavioral model of compulsive hoarding. Behav Res Ther. 1996;34:341-350.

16. Diagnostic Criteria by Frost and Hartl, Revised, 2010 • Persistent difficulty discarding items • Accumulation of items, prevent normal use of space • Clinically significant distress or impairment in social, occupational, or other important areas of functioning • Not due to a general medical condition • Not restricted to symptoms of another mental disorder (due to obsessions in OCD, lack of motivation in MDD, delusions in schizophrenia, cognitive deficits in dementia, restricted interests in autistic disorder, food storing in Prader-Willi Syndrome) • Specify if • With excessive acquisition • Good or fair insight, poor insight, delusional Source: Mataix-Cols D, Frost RO, Pertusa A, et al. Hoarding disorder: a new diagnosis for DSM-V? Depress Anxiety. 2010;27(6):556-572.

17. Hoarding Scales • UCLA Hoarding Severity Scale (UHSS), approximately 2001 • a 10-item, clinician-administered scale • extent of clutter, urges to save items, excessive acquisition, difficulty discarding, social and occupational impairment, slowing, indecisiveness, and procrastination • allows additional questions for clarification Saxena S, Brody AL, Maidment KM, Baxter LR Jr. Paroxetine treatment of compulsive hoarding. J Psychiatr Res. 2007;41(6):481-487.

18. Hoarding Scales - Continued Clutter Image Rating, 2008 • 9 photos of three rooms (living room, kitchen, and bedroom) • Available at http://www.oup.com/us/companion.websites/umbrella/treatments/hidden/mforms/?view=usa Frost RO, Steketee G, Tolin DF, Renaud S. Development and validation of the clutter image rating. J Psychopath Behav Assess. 2008;30:193-203. Saving Inventory-Revised, 2004 • Developed to replace scale developed in 1998 that did not assess important symptoms unknown at the time it was developed • 23 items that examine discarding, clutter, and acquisition Frost RO, Steketee G, Grisham J. Measurement of compulsive hoarding: saving inventory-revised. Behav Res Ther. 2004;42(10):1163-1182.

19. Hoarding Scales - Continued The Hoarding Rating Scale-Interview, 2010 • 5 items, semi-structured interview • Looks at clutter, difficulty discarding, acquisition, distress and impairment • Scale of 0-8 for each question • http://www.ocfoundation.org/uploadedFiles/Hoarding/Resources/Hoarding%20Rating%20Scale%20with%20interpret.pdf Tolin DF, Frost RO, Steketee G. A brief interview for assessing compulsive hoarding: the Hoarding Rating Scale-Interview. Psychiatry Res. 2010;178(1):147-152.

20. DSM-V Issues • Separate diagnosis? • Not restricted to symptom of another disorder • Change proposed criteria? • Reflect gender, developmental, or cross-cultural considerations? • Call it what? • Include compulsive in the name? • Where classify it? • Separate OCSD • Appendix of Criteria Sets Provided for Further Study • Symptom of OCD? • Symptom of OCPD? • Consequence of/secondary to OCD? • Variant of OCD (when it appears in the absence of other OCD symptoms)? • Majority of cases display no other OCD symptoms

21. DSM-V • Link between hoarding and OCPD can be explained mostly by overlapping item content • Personality and Personality Disorders Workgroup currently recommends excluding hoarding as a major trait or dimension of OCPD • More in line with ICD-11 • Weak intercorrelations in current OCPD criteria • Benefits of new diagnosis • Improve clinical communication • Provide better patient care • Stimulate new research • Many current OCD studies exclude hoarders • Patients are unhappy with current OCD diagnoses

22. New Diagnosis • New diagnosis – sufficiently distinct? • Diagnostic criteria • Adequate clinical face validity – already established by 100s of cases • Reliability? • Adequate sensitivity and specificity? • Easily implemented in interview and assessed? • Label normal as abnormal • Where draw the line? • Social consequences • Economic consequences Source: Mataix-Cols D, Frost RO, Pertusa A, et al. Hoarding disorder: a new diagnosis for DSM-V? Depress Anxiety. 2010;27(6):556-572.

23. Neuroimaging • Pts have developed compulsive hoarding and collecting behaviors after damage to • OFC • mPFC caused by • cerebral hemorrhage from ruptured anterior communicating artery aneurysms • Resection of olfactory meningioma • Frontotemporal dementia

24. Neuroimaging - Continued • 9 pts w/compulsive hoarding compared to 54 nonhoarding brain-damaged pts • All hording pts – damage to PRC, mostly in medial and inferior areas • Greatest lesion overlap in hoarders • Right mPFC, orbitofrontal pole, anterior cingulate cortext (ACC) and adjacent white matter1 • Compulsive hoarders had significantly lower normalized glucose metabolism in the bilateral and ventral ACC than controls2

25. Neuroimaging - Continued • Compulsive hoarding – neurobiologically distinct disorder w/unique pattern of abnormal brain function that does not overlap w/ that of nonhoarding OCD • Important findings for classifying compulsive hoarding but also its tx and neurobiology2 1. Anderson SW, Damasio H, Damasio AR. A neural basis for collecting behaviour in humans. Brain. 2005;128:201-212. 2. Saxena S. Recent advances in compulsive hoarding. Curr Psychiatry Rep. 2008;10:297-303.

26. Neuroimaging Source: Baxter LR Jr. Neuroimaging studies of obsessive compulsive disorder. Psychiatr Clin North Am. 1992;15(4):871-884. • OCD – mediated by elevated activity in specific orbitofronto-striatal-pallidal-thalamic circuits • Compulsive hoarding – mediated by partially distinct fronto-limbic circuits involving the cingulate cortex, prefrontal cortex, limbic structures

27. Scanned while imagining throwing away items. Source: An SK, Mataix-Cols D, Lawrence NS, et al. To discard or not to discard: the neural basis of hoearding symptoms in obsessive-compulsive disorder. Mol Psychiatry. 2009;14(3):318-331.

28. Compared to non-hoarding participants, hoarding participants showed greater activity in left lateral orbitofrontal cortex (OFC) and parahippocampal gyrus (PHG). Source: Tolin DF, Kiehl KA, Worhunsky P, Book GA, Maltby N. An exploratory study of the neural mechanisms of decision making in compulsive hoarding. Psychol Med. 2009;39(2):325-336.  Scanned while making choices; items were shredded if choice was made to do so.

29. Comorbidities 1. Mataix-Cols D, Frost RO, Pertusa A, et al. Hoarding disorder: a new diagnosis for DSM-V? Depress Anxiety. 2010;27(6):556-572. 2. Pertusa A, Frost RO, Mataix-Cols. When hoarding is a symptom of OCD: a case series and implications for DSM-V. Behav Res Ther. 2010;48:1012-1020. 3. Steketee G, Frost R. Compulsive hoarding: current status of the research. Clin Psychol Rev. 2003;23(7):905-927. • Meta-analysis of 21 studies w/5,000 participants w/OCD – hoarding an independent factor in adult and pediatric samples • OCD – 15-35%1, 3 • Major depression = 36% • Social phobia – 20% • GAD – 24%2 • Dependent personality disorders • Paranoia • Brain injury • Dementia3

30. 25 pts w/severe compulsive hoarding w/OCD, 27 pts w/severe compulsive hoarding w/out OCD, 71 pts w/OCD w/out hoarding, 19 pts w/anxiety disorder, & 21 community participants. Source: Pertusa A, Fullana MA, Singh S, Alonso P. Compulsive hoarding: OCD symptom, distinct clinical syndrome, or both? Am J Psychiatry. 2008;165:1289-1298.

31. Clinical Trial, 2010, Recruiting • Enhancing Attention in Adults with Compulsive Hoarding • New York State Psychiatric Institute and Hartford Hospital (CT) • Methylphenidate ER – 18mg/day at start w/increase of 18mg/day per week to reach 72mg/day • Outcome: improvement in attention based on ADHDSS (Attention Deficit Hyperactivity Symptom Scale) • http://www.clinicaltrials.gov/ct2/show/NCT01100268

35. Hoarding in the Media

36. Hoarders, A&E, Mondays at 10/9c http://www.aetv.com/hoarders/index.jsp

37. Hoarding: Buried Alive, TLC, Sundays at 9/8c http://tlc.discovery.com/tv/hoarding-buried-alive/

38. Confessions: Animal Hoarding, Animal Planet

39. Treatment • Difficult to treat • May involve confrontive intervention • Often long-term • Cognitive Behavior Therapy (CBT) • SRIs – 40-60% respond • Paroxetine • Antipsychotic medications • Cognitive enhancers(AChEl and NMDA)

40. Helpful Resources International OCD Foundation http://www.ocfoundation.org/ Hartford Hospital website on compulsive hoarding http://www.compulsivehoarding.org The Hoarding of Animals Research Consortium http://www.tufts.edu/vet/hoarding/ Pet-Abuse.Com – report animal cruelty; see http://www.pet-abuse.com/pages/animal_cruelty/reporting_abuse.php Stuff: Compulsive Hoarding and the Meaning of Things by Randy O. Frost and Gail Steketee, Houghton Mifflin Harcourt, 2010

41. Acknowledgement • Dr. Osborn would like to express sincere thanks to Lisa Travis, MS, EdS, Medical Librarian for LMU-DCOM, for her assistance in the research and preparation for this presentation.