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VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans

This article discusses the management of chronic multi symptom illness in Gulf War I veterans within the VA system. It explores topics such as diagnosis, barriers to access, clinical practice guidelines, and education for providers and patients.

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VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans

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  1. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Stephen C Hunt MD MPH Director, VA Post-Deployment Integrated Care Initiative Institute of Medicine Irvine, California April 12, 2012

  2. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans “While commanding an artillery battalion during Gulf War I, one of my soldiers suddenly became quite ill. Despite the best efforts of our medical team, they could not diagnose what made him so sick. Out of 800 solider is under my command, no one else was that sick. No here we are , almost 20 years later and this Veteran is still suffering– and has been since the war. I have watched him when he could barely stand up, couldn’t cross the room on his own, his legs were so weak. He has been in and out of hospitals many times, seen by some of the best doctors and yet there is still no explanation for his debilitating illness…and this Veteran is not alone.“ John Gingrich, VA COS VA GW Veterans Task Force

  3. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans • How is CMI addressed in the VA system? • What is the pathway to entry into the VA system for people with CMI? • How is CMI diagnosed? • What are barriers to access? • How are clinical practice guidelines disseminated? • How are VA providers and patients educated about CMI?

  4. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans How is CMI addressed in the VA system? Generic Medically Unexplained Symptoms vs GW Related Chronic Multi-Symptom Illness

  5. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Centers for Disease Control (CDC) defined "chronic multi-symptom illness" and applied the definition to study the relationship of the Gulf War to subsequent illness. The chronic multi-symptom illness definition has the advantage of encompassing several common syndromes that are comprised of unexplained symptoms (Fukuda & Nisenbaum, 1998).

  6. Provider’s Beliefs about Gulf War symptoms

  7. Rate the degree to which you believe “Persian Gulf Illness” is: Percent Richardson RD, Engel CC, McFall, M, McKnight K, Hunt SC. Clinician Attributions for Symptoms and Treatment of Gulf War-Related Health Concerns. Archives of Internal Medicine 2001; 161: 1289-1294.

  8. Rate the degree to which you believe “Persian Gulf Illness,” in general, is most effectively treated by: Percent Richardson RD, Engel CC, McFall, M, McKnight K, Hunt SC. Clinician Attributions for Symptoms and Treatment of Gulf War-Related Health Concerns. Archives of Internal Medicine 2001; 161: 1289-1294.

  9. Gulf War Veterans’ Beliefs about their Symptoms

  10. What we don’t know about GW veterans health… The specific effects of many of the numerous combat related exposure on post-war health The specific cause(s) of the chronic multi-symptom illnesses so commonly see in GW veterans The relative contributions of the many combat related exposures and experiences to specific post-war health symptoms and concerns The long term health risks of many of the numerous combat related exposures and experiences

  11. What we do know about GW veterans health… GW veterans have more medically unexplained symptoms than veterans of other conflicts GW veterans have a particular constellation of symptoms (fatigue, muscle/joint pain and memory/concentration problems) more often than combat veterans from other conflicts GW veterans have more concerns about, and possibly more exposure to, a wider variety of chemicals and environmental agents than combat veterans of other conflicts GW veterans have poorer general health and functioning than expected GW veterans had less exposure to traditional combat stressors but more exposure to chemical/biological stressors than combat veterans from other conflicts

  12. What we do know about individuals with unexplained symptoms… Unexplained symptoms are not unique to GW veterans Most individuals coming in to see their primary care doctors have symptoms for which a specific cause will not be found In many cases, we do not have to know the specific cause of a symptom to effectively treat the symptom Attributing a symptom to an incorrect cause may result in incorrect or ineffective management of the symptoms Living with medically unexplained symptoms or chronic multi-symptom illness can be more challenging than living with a diagnosed disease

  13. To say that we do not know the cause of a symptom is not to say… We do not care We are not doing our best Your health concerns are not real Your symptoms do not matter These health concerns are not serious There is nothing we can do

  14. To say that we do not know is to say… This is complex; to be simplistic is to dishonor the complexity of this reality…there are no “magic bullets”…treatment will take time and a team effort It is important not to guess or to act upon assumptions It matters a great deal that we are honest and straightforward It is more important than ever to pay attention, take care of one’s self, stay involved in care, support ongoing research Our goal is not to eradicate all symptoms related to disease; our goal is to mitigate symptoms, improve functioning and optimize quality of life for the Veteran and his/her family

  15. What we do know about treating individuals with unexplained symptoms… To effectively manage unexplained symptoms: Comprehensive initial assessment and testing Effective communication and education of patient Validation of the patient’s experience and symptoms; acknowledgement that “it is real” A willingness to acknowledge complexity and “not knowing” Symptomatic treatment Patient centered: health maintenance, preventive medicine, health recovery; shift from medical to self-management approach Ongoing monitoring of care and status; life long commitment Ongoing research into the specific syndrome/condition involved

  16. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans What is the pathway to entry into the VA system for Veterans with CMI?

  17. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans What is the pathway to entry into the VA system for Veterans with CMI? Non GW Veteran GW Veteran

  18. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Non GW Veteran GW Veteran Post-Deployment PACT Environmental Coordinator/Registry Environmental Registry Clinician MUS and PDH CPG Presumptive SC for CMI SC for Non-Presumptives WRIISCs Clinical trials PACT (Patient Aligned Care Team) MUS CPG

  19. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Cognitive Behavioral Therapy and Aerobic Exercise for Gulf War Veterans Illnesses A Randomized Controlled Trial Donta ST, Clauw DJ, Engel CC; JAMA March 19, 2003; 289(11) “…we found that CBT improved physical function whereas exercise relieved many of the symptoms of GWVI; both therapies improved cognitive symptoms and mental health functioning but neither therapy improved pain. Our results are consistent with the reported modest beneficial effects of these therapies in similar multi-symptom illnesses and demonstrate that such treatment are safe and could be implemented in a large health care system.”

  20. Post-Deployment Health Care Needs Combat injury Marital/family financial difficulties Non- combat injury TBI Non-combat illness Post-combat symptoms Environmental exposure illness Spiritual / existential struggles C&P needs Hearing loss tinnitus Mental health

  21. Post-Deployment Integrated Care Combat injury Marital/family financial difficulties Non- combat injury TBI Non-combat illness Post-combat symptoms Environmental exposure illness Spiritual / existential struggles C&P needs Hearing loss tinnitus Mental health

  22. What are the stressors of war? Physical injury noise temperature sleep deprivation diet austere conditions toxic agents infectious agents immunizations blast wave/head injury

  23. What are the stressors of war? Psychological anticipation of combat combat trauma non-combat trauma separation from family/home deprivation

  24. What are the stressors of war? Psychosocial Marital/parenting issues Social functioning Occupational/financial concerns Risk of re-deployment Spiritual / existential

  25. Integrated Post-Combat CarePDICI (Post-Deployment Integrated Care Initiative 2008) Primary Care Provider Mental Health Provider Veteran Social Worker

  26. Post Deployment Care VAs with PC training programs more likely to have OEF/OIF clinics (p<.05) Source: VA Primary Care Survey (2009).

  27. Post Deployment Care Source: VA Primary Care Survey (2009).

  28. Post-Deployment Integrated Care PC-MHI Evaluation Survey 2010 McCarthy/ Brockmann

  29. Characteristics of VA Post-Deployment Integrated Care Arrangements Tamar Wyte, DPT, MPH Casey MacGregor, MSW Brian Mittman, PhD Community of practice call September 9, 2011

  30. CONSULTATIVE MODEL = CLINICAL EXPERTS 84% of all VAMCs have Clinical Expert(s) who provide clinical guidance and advice about OEF/OIF Veterans without taking over care of patient 80% OF OEF/OIF clinical experts from more than one Service work together as an OEF/OIF consultative team

  31. PD PACT (Patient Aligned Care Team)

  32. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans How is CMI diagnosed? VHA Clinical Practice Guidelines • Medically Unexplained Symptoms • Post Deployment Health

  33. Development of VHA/DoD Clinical Practice Guideline • Guideline was developed to addressManagement of Medically Unexplained Symptoms: Chronic Pain and Fatigue • Guideline provides treatment options and a general clinical approach to patients with MUS

  34. Development of VHA/DoD Clinical Practice Guideline • Process was evidence-based where possible • Guideline is presented in an algorithmic format • A step-by-step decision tree • Evidence based treatment modalities • Pharmacological • Non-pharmacological

  35. VHA/DoD Clinical Practice Guideline Key Points • Establish patient has MUS • Minimize low yield diagnostic testing • Determine CMI classification • Negotiate tx options and establish collaboration with patient • Provide appropriate patient and family education • Maximize the use of pharmacological and non-pharmacological therapies • Empower patient to take active role in recovery

  36. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans How is CMI diagnosed? VBA Definitions and regulations for Chronic Multi-Symptom Illness

  37. §3.317 Compensation for certain disabilities due to undiagnosed illnesses. (i) Became manifest either during active military, naval, or air service in the Southwest Asia theater of operations, or to a degree of 10 percent or more not later than December 31, 2011; and (ii) By history, physical examination, and laboratory tests cannot be attributed to any known clinical diagnosis.

  38. Fast Letter 10-026 (July 21, 2010) • VA has statutory authority under 38 U.S.C. § 1117 to compensate Veterans for qualifying chronic disabilities resulting from Gulf War and Southwest Asia service when the disability is an “undiagnosed illness” or a diagnosed “medically unexplained chronic multisymptom illness.” Section 1117 provides the following as examples of qualifying diagnosed multisymptom illnesses: chronic fatigue syndrome, irritable bowel syndrome, and fibromyalgia. However, the regulatory language of section 3.317 implementing the statute suggests that these three diagnosed illnesses are an exclusive listing, rather than just examples. • Regulatory Change • VA is revising § 3.317 to clarify that the three listed diagnosed multisymptom illnesses are not exclusive, but rather are examples that can serve to inform VA medical examiners and adjudicators of the general types of medically unexplained chronic multisymptom illnesses that may qualify for service connection under the § 1117 authority.

  39. (ii) For purposes of this section, the term medically unexplained chronic multi-symptom illness means a diagnosed illness without conclusive pathophysiology or etiology, that is characterized by overlapping symptoms and signs and has features such as fatigue, pain, disability out of proportion to physical findings, and inconsistent demonstration of laboratory abnormalities.

  40. §3.317— Compensation for certain disabilities due to undiagnosed illnesses. (b) Signs or symptoms of undiagnosed illness and medically unexplained chronic multisymptom illnesses. For the purposes of paragraph (a)(1) of this section, signs or symptoms which may be manifestations of undiagnosed illness or medically unexplained chronic multisymptom illness include, but are not limited to: (1) Fatigue. (2) Signs or symptoms involving skin. (3) Headache. (4) Muscle pain. (5) Joint pain. (6) Neurological signs or symptoms. (7) Neuropsychological signs or symptoms. (8) Signs or symptoms involving the respiratory system (upper or lower). (9) Sleep disturbances. (10) Gastrointestinal signs or symptoms. (11) Cardiovascular signs or symptoms. (12) Abnormal weight loss. (13) Menstrual disorders.

  41. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans How are clinical practice guidelines disseminated? • The CPG for MUS and PDH can be accessed via: • VA Intranet (Office of Quality, Safety and Value) • Internet (Google search) • Second site is US DVA Public Health GW Veterans MUS • CPRS

  42. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans How are VA providers and patients educated about CMI?

  43. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Educating VA providers • VA Intranet • Home Page to Health Care To VHA Program Offices to Office of Public Health where you find A-Z index with Gulf War Veterans Illnesses, DU, WRIISCs • Internet (Google search) • Second site is US DVA Public Health GW Veterans MUS • CPRS • VHI: Caring for GW Veterans (update released 7/11) • Post-Deployment Wiki

  44. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Recent Trainings • WRIISC Webinar: Drew Helmer MD, Director East Orange WRIISC (240 + in attendance) March 23, 2012 • Post-Deployment Integrated Care Community of Practice calls (held monthly, 125 + individuals/teams participate) • Gudrun Lange (former Director, NJ WRIISC) August 2011 • Drew Helmer (Director, NJ WRIISC)/Steve Hunt (PDICI) April 2012 • Four WRIISC conferences 2011 • DBQ Conference December 1, 2011

  45. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Recent Trainings • Streamlined and enhanced the process of developing the GW Review newsletter to make it timely; improved the content and graphics based on literature reviews, interviews with VA staff and VSOs. • Published a 20th anniversary edition of the Gulf War Review – about 414K copies were distributed (226K to individuals and 189K in bulk to VHA, VBA, & NCA facilities and VSOs) • Published a 20th anniversary poster – about 290K distributions (226K to individuals and 65K in bulk to VHA, VBA, and NCA facilities and to VSOs) • Promoted the 20th anniversary materials widely, with graphics used on the VA, VHA, and VA medical center Web sites.

  46. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Recent Trainings • Developed posters on “VA Cares for Veterans who Served in the Gulf War,” that encourage Veterans to ask about health care, the GW registry, and other benefits available to them. For three designs, about 60K smaller ones and 18K larger ones were printed and distributed to VA facilities and VSOs. • Participated in the 20th anniversary Gulf War reunion, speaking, distributing these materials.

  47. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Recent Trainings • Sponsoring focus groups with GW Veterans to receive feedback from Gulf War Review readers. Project is due to be completed 1Q FY2011. • Winter issue of the GW Review is underway. Contents will always include women Veterans, research, and War Related Illness and Injuries Center information, as well as other health and benefits information for GW Veterans. • Using a variety of traditional and new means to get the word out on publications and other news for and about GW Veterans, including Facebook and Twitter, as well as email announcements, conference calls, seminars, and Web updates. • Continuing our review of VA-sponsored websites to ensure accurate, current information, ease of accessibility, and up to date information. Periodic, thorough reviews have been implemented. Page visits range from 20K to 40K per month.

  48. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Recent Trainings • Revised and updated brochure on VA environmental health registries, including the GW registry, is going to press and will be distributed throughout VA and to VSOs in winter 2011 and used widely at Veteran outreach events. • Created new pocket cards for VA providers on malaria and on TBI are going to press and will be widely distributed in the VA health care system in winter 2011 to encourage recognition of symptoms and treatment for these diseases. • The VA Helpline continues to provide callers with detailed information regarding the caller’s circumstances. Since the development of the Gulf War helpline in 2003, VA has received over 32,000 calls.

  49. VA Approaches to the Management of Chronic Multi-Symptom Illness in Gulf War I Veterans Recent Trainings • Developed posters on “VA Cares for Veterans who Served in the Gulf War,” that encourage Veterans to ask about health care, the GW registry, and other benefits available to them. For three designs, about 60K smaller ones and 18K larger ones were printed and distributed to VA facilities and VSOs. • Participated in the 20th anniversary Gulf War reunion, speaking, distributing these materials.

  50. Environmental Agent Exposures in Veterans and Risk Communication for Frontline Providers

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