Telehealth Programs for Veterans with MS and ALS within VA: Role of Centers of Excellence Networks

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1 Telehealth Programs for Veterans with MS and ALS within VA: Role of Centers of Excellence Networks Robert L. Ruff, MD, PhD Patricia G. Banks, RN, MSNEd, CCRP Overseers for the MS Centers of Excellence Within the Veterans Health Administration

2 Disclosures The presenters of this session have nothing to disclose. This continuing education activity is managed and accredited by Professional Education Services Group in cooperation with the Paralyzed Veterans of America. Neither PESG nor PVA nor any accrediting organization supports or endorses any product or service mentioned in this activity. PESG Staff and the Program Planning Committee have no financial interest to disclose. Commercial Support was not received for this activity.

3 Rationale for Specialty Care Networks VHA cares for >200,000 veterans with complex progressive neurological disorders Epilepsy Multiple Sclerosis about 80,000 have an MS Dx Parkinson s Disease Primary Care Providers not comfortable with managing these disorders Disease specific networks can optimize care by supporting primary care providers, enhance quality and reduce outsource costs.

4 Rationale for Specialty Care Networks Care Networks provide: Specialty Access to highly technical care Deep brain stimulation and epilepsy surgery Access to specialized medications Disease modifying agents for MS (Tysabri), Parkinson s disease, epilepsy Research opportunities Tracking outcomes Education and support for primary care providers and care givers.

5 MSCoEs Multiple Sclerosis Centers of Excellence Legislated as permanent in 2006 by PL Special purpose Appropriated $6 million Initially established 2 Centers of Excellence for the advancement of care provided to patients with Multiple Sclerosis Regional distribution with MS Centers located in Baltimore (East) and Portland/Seattle (West) 5

6 MSCoEs and Veteran-Center Care 2 MSCoEs support a network of other sites to extend the MSCoEs into VHA, provide a network for evaluation and treatment of veterans with MS MSCoE Network Provide an organized network connecting subject matter experts having high levels of expertise in MS. Function as regional centers for performing very complex procedures and diagnostic evaluations, and for referral of the more-complicated and difficulty patients Developed MS Handbook of Care to set standards for care Distribute knowledge and support to the broader network of neurologists and primary care providers 6

7 MSCoE Networks MS Regional Centers Mini-centers within each VISN Support the primary care base throughout each VISN at both inpatient and outpatient facilities. The MS Handbook Establishes guidelines for care Defines appropriate care (meds, DME etc.) Establishes resources needed to provide care and connect each facility with an MS Network Site and MS Center of Excellence. 7

8 MSCoE Networks Make $ sense VHA 46,000+ veterans with MS, MS Network involved with care for 40,000+ veterans (87%) VHA MS network costs VACO $3,000,000 ($115. per veteran). This does not include medication costs, which are controlled by cooperation between MS Centers and Pharmacy Service VHA pays $36,000,000 for outsourced care for the remaining 6,000 veterans (not including medication costs and procedure costs) ($6,000 per veteran) MS Network care is able to oversee the care provided to assure that veterans receive the appropriate care 8

9 MSCoE Quality & Education All 3 National MS Centers are CARF accredited MSCoEs provide multidisciplinary care including rehab, psychological counseling, care giver support MSCoEs heavily involved with EES to provide provider education produced >10 EES national presentations in past 2 years. MSCoEs provide veteran and family directed educational material in multiple formats printed, web, podcasts

10 Location of MS Centers and Network Sites Superimposed on a Map Showing Veterans the location with a Diagnosis of Veterans of MS with in CONUS MS (dots) MSCoE MSCoE Network Sites Also Exist in Alaska, Hawaii and PR 10

11 Summary of MS Care The MSCoE Network provides ways to maximize existing healthcare resources within VHA, extend specialty care to all veterans and do so with potential cost savings by reducing outsourced (fee-basis) care. These networks strongly support the concept of veteran centered care. The specialty care networks enable each VISN to provide the best level of MS, PD and Epilepsy care These programs are potentially cost-saving and will support the PACT 11

12 Goal How to best provide care for Veterans with ALS

13 Objectives Learn about the increased risk for Veterans and ALS Understand the life expectancy of ALS Appreciate the implications of upcoming ALS Handbook Consider Possible ALS Sites of Excellence Learn about a Brain Computer Interface technology to improve communication

14 Background IOM report 11/10/2006 military service increases life risk of ALS by 1.5 fold September 23, 2008, ALS became a presumptively compensable illness For USA: ALS Prevalance ~30,000 Incidence: ~5,000 new cases/yr For All Veterans: prevalence ~4220 veterans Incidence: ~1055 new cases/yr FY VHA cared for 3581veterans with ALS, average of 1521vets/yr (42% rural 57% urban) VHA cares for ~42% of veterans with ALS

15 Prevalence of ALS Treated by VHA Fiscal Year No. of Veterans Treated

16 Median Survival of Veterans with ALS Treated by VHA Duration of Time that 50% of Veterans Survive 4 3 Years 2 1 Median Survival in Years Fiscal Year 1. Median Survival for ALS in 2008 in the US general population was 3 years 2. Increased Survival in part due to use of Riluzole and improved integrated care

17 Location of Veterans with ALS

18 Cost of ALS Care by VHA In FY2008, 1,178 inpatient admissions and 76,568 outpatient encounters to serve 1,532 Veterans with ALS. Average annual was $30,310. Total Cost FY2008 was $46,435,000 In FY2008, Fee-Basis costs for ALS for ALS was low, <7% of total cost.

19 Distribution of Outpatient Costs FY2007 Home or Telephone Services 10% Primary Care Medicine 5% Outpatient FY2007 Service Encounters Psychological Assessment 1% Physical Therapy 1% Neurology 2% Speech Pathology - Audiology 1% Occupational Therapy 1% Social Work 1% Other Encounters 20% Pharmacy, PSAS, Lab, Radiology 58%

20 VHA Challenges in Treating ALS Complex, low incidence, progressive disease with physical and emotional components Few Experienced Health Care Providers Need to couple primary and specialty care Veteran/Family need a conductor Progression of this disease is rapid reduce delays in delivery of care/dme Veteran/Family need education and links to others with ALS Number of veterans with ALS treated in VHA could double

21 Task Force Recommendations ALS diagnosis should be confirmed or excluded as quickly as possible Structure ALS services using established principles of ALS management Diagnosis communication: understandable, empathetic, and supportive Veteran with ALS should be seen by an ALS interdisciplinary team Create effective interdisciplinary care processes for Veterans with ALS Interdisciplinary team should include the Patient s Primary Care Provider

22 Task Force Recommendations (con t) Need to address at each visit - strength, pain/spasticity, swallowing, breathing, communication, sleep, emotional needs, anticipate issues such as feeding tube and end of life issues Co-management of care should be used to balance the need for accessible, local care with the need for interdisciplinary ALS specialty care. Management and coordination should address durable medical equipment, community collaboration, caregiver issues, and standardized assessment. Educate clinical staff members caring for Veterans with ALS on best practices and evidence-based treatment as well as ways to support the needs/options for Veterans and caregivers.

23 27 Sites of ALS Treatment Strength in VHA

24 FACILITIES 1 - VA CT Health Care System 2 - VA Western NY Health Care System at Albany NY 3 - James J. Peters VA Medical Center in Bronx NY 4 - VA Pittsburgh Health Care System 5 - VA Maryland Health Care System 6 - Durham VA Medical Center 7 - Ralph H. Johnson VA Medical Center 8 - James A. Haley VA Medical Center in Tampa FL, Miami VA, Gainesville VA 9 - Tennessee Valley VA Health Care System or Lexington KY VA Medical Center 10- Louis Stokes VA Medical Center in Cleveland OH 11- Richard L. Roudebush VA Medical Center 12- Edward Hines, Jr. VA Medical Center and Clement J. Zablocki VA Medical Center 15- St. Louis VA Medical Center 16- Oklahoma City VA Medical Center 17- VA North Texas Health Care System 18- New Mexico VA Health Care System 19- VA Eastern Colorado Health Care System in Denver CO 20- VA Puget Sound Health Care System in Seattle WA and Portland VA Medical Center 21- VA Palo Alto Health Care System and San Francisco VA Medical Center 22- VA Long Beach Healthcare System in Long Beach CA and VA Greater Los Angeles VA 23- Minneapolis VA Medical Center

25 Location of Veterans with ALS

26 Educate clinical staff members caring for Veterans with ALS on best practices and evidence-based treatment as well as ways to support the needs/options for Veterans and caregivers Implicit in this recommendation is the need to conduct research to evaluate existing and develop new interventions A pressing need for people with advanced ALS is the need to remain in touch to communicate with family, friends and the outside world.

27 The Diving Bell and the Butterfly The Diving Bell and the Butterfly by Jean- Dominique Bauby describes what his life is like after suffering a massive stroke that left him with a condition called locked-in syndrome. The book also chronicles everyday events for a person with locked-in syndrome. In 2007 the book was adapted into a feature film

28 Le scaphandre et le papillon On 9 March 1997, three days after the book was published, Bauby died of pneumonia.

29 People Adapt to Where They Are People who are paralyzed due to SCI and who are stable 1 year after injury - selfperceived Quality of Life is comparable to where it was pre-injury Get pleasure from what they can do and via imagination Being able to communicate is critical to remaining connected dramatic effect on QOL

30 CSP 567 Demonstration Programs of a Non-Invasive BCI communication Device for Veterans with ALS Robert L Ruff, MD, PhD Richard Bedlack MD Jon Wolpaw MD

31 Recording Sites for Brain Waves

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33 Brain Computer Interface Cortical Implant Technique

34 BCI Interprets Firing Patterns of Neurons to Discern Subject s Wish

35 Early Implanted BCI - Donahue

36 CSP 567 evaluates a scalp electrode BCI device to facilitate communications for veterans with amyotrophic lateral sclerosis (ALS). The device is based upon the robustness of the p300 visual recognition signal.

37 Signals reflecting brain activity are acquired from the scalp and are analyzed to measure signal features (such as configuration of p300 wave) that reflect the letter of interest to the user. The output can be as a text for , synthesized speech etc

38 Study Status 5 Sites Cleveland, West Haven, Albany, Providence and Durham Speech use analysis site in Pittsburgh Study conducted in Veteran s homes - subjects with ALS do not have to travel to participate Target of 25 subjects enrolled. 25 enrolled by March month early!

39 Summary ALS more frequent among veterans ALS care is complex Severity of problems Variability of presentation and course Interdisciplinary Care Best VA Can Care for veterans with ALS ALS Care Handbook Close to Release CSP Study of an Advanced Communication Device