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HD Care Models


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Many effective care models for Huntington disease exist, and at HSG 2016, leaders in HD care described theirs.

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HD Care Models

  1. 1. Care Models for Huntington Disease Friday, November 4 3:30-5:00pm Chair: Karen Anderson, MD MedStar Georgetown University Hospital
  2. 2. Presenters HSG 2016: DISCOVERING OUR FUTURE Dan Claassen, MD Vanderbilt University Rebecca Ferrini, MD Edgemoor Hospital Martha Nance, MD Struthers Parkinson's Center Mary Edmondson, MD HD Reach LaVonne Goodman, MD HD Drug Works
  3. 3. HD REACH Huntington Study Group Annual Meeting Mary C. Edmondson, MD November 4, 2016
  4. 4. Mission • To improve access to health care, education and social assistance for people with Huntington’s disease in North Carolina • Community based • Referral source • Location • Cost • Data driven: • Continuous quality improvement • Devoted to outcomes
  5. 5. The HD Reach Model: help where it’s needed •Attend HD clinics •Decision support for local providers •Connect with partner organizations •Website resources •Family Education •Provider Education •In-service Programs for Facilities •Outreach to Local HD Communities •Support groups •Community-building Events •Assessment of Need •Care Plan Development and Implementation •Locate/ Refer to Providers • Find Resources •Crisis Intervention Family Service Support Community Provider Network Education Platform
  6. 6. Population affected by HD Location Total Population People with HD* People At Risk** Total affected and at-risk Impacted family members** * NC 9,944,000 994 6712 7706 24,737 United States 318,900, 000 31,890 274,147 279,037 895,709 US Census 2014 * Estimated, based on NIH quoted prevalence of 1/10,000 ** Estimated based on 2000 estimate of 200,000 at risk = 6.75/10,000 *** Estimated number of household members impacted by HD based on average family unit of 3.21 members Source: HDSA, 04/2010
  7. 7. Pattern of HD Reach Engagement CLIENTSHDREACHSERVES DIFFERENTSCALES Projected Actual
  8. 8. Care Models for HD Karen E. Anderson, M.D Associate Professor, Psychiatry & Neurology Director, HSDA COE at Georgetown University, Care, Education and Research Center
  9. 9. Why are different models to deliver healthcare so critical in HD? • HD specialty clinics see more patients per doctor • But, as a group generalists see more patients • How do we reach HD patients who are not near a Center?
  10. 10. Estimated % patients seen at established centers • 2011 HDSA data: COE sites: 4,192 unique HD individuals for a total of 6,582 visits (1.5 visits/year) • 15% (assuming a 30,000 base population)
  11. 11. Estimated % patients in HD research sites • Non-COE HD specialty centers: double it to 30% • Even if 15% >> 30%, where do others receive care? • Out in the community- how do we reach them ?
  12. 12. Care-comprehensive services • Education- training clinicians in all disciplines • Research- new medications for symptoms and slowing disease progression • Center- but with outreach HD CERC
  13. 13. • Multidisciplinary center • Satellite clinics • HDYO youth outreach program Community Efforts at GU
  14. 14. Multidisciplinary
  15. 15. • Social work support • Neurological care • Psychiatric/neuropsychiatric care • Neuropsychological memory evaluation • Genetic counseling and testing • Physical & Occupational Therapy consults Multidisciplinary
  16. 16. • Home clinic at GU • Satellite clinic in suburban Maryland • Second Satellite in suburban Virginia Use of Satellite clinics in the HD CERC
  17. 17. • Pilot program at GU for Youth Worker to do outreach with local families- GU covers 40% of Youth Worker salary • Based on highly successful program in UK • Website outreach expands geographical impact HD Youth Organization
  18. 18. HDYO Expands Geographical Reach
  19. 19. HDYO
  20. 20. CURA FAMILIA
  21. 21. A Generalist’s Perspective for HD Care Delivery LaVonne Veatch-Goodman, M.D. The Everett Clinic (TEC) Washington State
  22. 22. Learning objectives 1. HD centers provide care for minority of HD population 2. Many (most) centers do not/can not provide chronic disease management 3. Discouraging “doing it alone” community care of HD may not be useful 4. Chronic disease model of HD care by generalists is doable -- with guidelines
  23. 23. Washington State: COE 15% The other 85%?
  24. 24. HDSA national data: 13%-15% seen in other U.S. centers CHDI data: Vast majority seen by generalists 1,884 1,392 1,028 376 152 0 200 400 600 800 1,000 1,200 1,400 1,600 1,800 2,000 TotalNumberofHDpatientsinpast24months Neurology Internal Med Family Practice Undefined Spec Psychiatry Physicians by Specialty Undef 8% Psychiatry 3% Fam Prac 21% Neuro 39% IM 29%
  25. 25. 15% is a mountain from the center perspective But for the HD population outside of centers care is lacking
  26. 26. Needed center growth for (chronic disease) care management 5,200 HD patients seen in Centers (2014 HDSA data). 12% of 43,000 U.S. patient population (1.5 visits/yr) Graph shows growth in center visits as population coverage increases, assuming average 3 visits per patient per year. Chronic disease management of 50% of population will require 5.5x increase in center capacity! baseline (1.5 visits) baseline (3 visits) 25% of population (3 visits) 50% of population (3 visits) 75% of pop. (3 visits)
  27. 27. If we are to meet care needs for HD in the U.S. • More centers/staff • More HD dedicated time • Better access Until then . . . • A complementary (fewer $$) route for the other 80%: Working with community “affiliate” centers/physicians/community resources
  28. 28. What does a generalist need to provide HD (or other) care? My guideline story: Working with the experts
  29. 29. My generalist “chronic disease” model of care • Frequent visits (aim for 2-4/year) • Monthly group visits (education and optional care visit) :TEC social worker is co-leader • Visit reminders • Chronic disease management improves outcomes, decreases # crisis visits • HD-specific Epic (smart text) template
  30. 30. Related HD services • Assessing/addressing carer needs as part of HD visit • Genetic testing (per guidelines): research and treatment information • Out of region consults, local care coordination • Local LTC and Hospice
  31. 31. My Team Approach? Working with what I have: • TEC employed: Palliative Care nurse, chronic disease nurse manager, social worker/counselor • Community therapists (PT, OT, speech) • No local HD psychiatrist Learning from the experts: Expert Practice Guidelines
  32. 32. Summary Multidisciplinary team center care is the gold standard where and when available • HD Centers serve the minority • Lack capacity for chronic disease management • With expert guidance, chronic care management can be delivered in community • Guidelines/visit templates are essential tools for improving generalist community care
  33. 33. Thank you! Please fill out the session survey in Grupio.
  34. 34. HD CARE MODEL Martha A. Nance MD Director, HD Center of Excellence, Hennepin County Medical Center Medical Director, Struthers Parkinson’s Center
  35. 35. Diagnosis Deat h Total Functional Capacity (0-13 points) Disease milestones Suicide gesture Marriag e First child born Suicide attemp t Disabled from work; affected parent dies Placed in long-term care facility Parent diagnosed with HD; First awareness of risk of HD Positive predictive gene test 0 2 4 6 8 10 12 14 0 5 10 15 20 25 30 35 40 45 50 Age (Years) Progression of symptoms and disability in a typical patient with Huntington’s disease Life milestones Stage 1: changes in work, role within family Stage 2: issues with work, driving, finances; able to live at home with minimal support Stage 3: impaired ADLs, needs supervision Stage 4: needs assistance with ADLs, 24 hour care appropriate Stage 5: needs assistance with all ADLs; progression to terminal stages
  36. 36. pHD Family extended spouse at-risk Manage crises Education Medical care Research Family issues Function Prepare for future The HD molecule
  37. 37. Medical care Stage 1-2 Diagnostic evaluation Giving the diagnosis Care of HD symptoms Medical and dental care Wellness Medical Care
  38. 38. Wellness Enjoy work, leisure activities Good nutrition Spiritual health ?Vitamins Community- building Exercise Wellness Stage 1-2
  39. 39. Medical care Stage 1-2 Diagnostic evaluation Giving the diagnosis Care of HD symptoms Medical and dental care Wellness Medical care
  40. 40. Symptom management Other psychiatric symptoms Depression/ anxiety Cognitive dysfunction Chorea Sleep disturbances Weight loss Symptom management Stage 1-2
  41. 41. Cognitive dysfunction Functional assessment Cognitive training ?Medication Neuropsych assessment Family counseling Cognitive management Stage 1-4
  42. 42. Symptom management Other psychiatric symptoms Depression/ anxiety Cognitive dysfunction Chorea/ dystonia Sleep disturbances Weight loss Symptom management Stage 3 Oral-motor dysfunction Falling
  43. 43. Oral-motor dysfunction Video Swallow study Bedside Swallow exam Discuss Gastrostomy tube Speech evaluation Communication devices Change food textures Stage 3 Oral-motor dysfunction
  44. 44. Multidisciplinary care • Neurologist • Psychiatrist • General physician • Dentist • Nurse (case manager) • Research nurse • Psychologist • Neuropsychologist • Physical therapist • Occupational therapist • Speech therapist • Dietitian • Social worker • Genetic counselor • Chaplain • Lay group liaison
  45. 45. Recommendations for clinicians
  46. 46. Give your clinic a name • Let’s write the grandparents a letter every month • The Trusheim Times
  47. 47. Give your clinic a name • Hey, a group of us are getting together during the meeting to talk about HD predictive testing cases… • The annual meeting of the US HD Genetic Testing Group is on Tuesday October 30 at 5pm…
  48. 48. Give your clinic a name • We see HD patients on Wednesday mornings in the neurology clinic • We have HD clinic on Wednesday mornings • The Huntington Disease Society of America HD Center of Excellence at Hennepin County Medical Center clinic hours are on Wednesday mornings
  49. 49. Say, “YES!” • Will you come to our Hoopathon? • We’re thinking of opening a group home for HD. Do you think that is a good idea? • We are honoring our mother by having an “auction and dinner event” in our town of 6,500 people. Is that a good idea? Will you come? • We are also are thinking of opening our home up as a group home for HD. Do you think that is a good idea? • We, too, are thinking of opening a group home for people with HD. What do you think?
  50. 50. Say, “YES!” • Can you come out to the school to meet with 20 staff members for an hour to talk about our daughter’s educational program? • My wife is dying, finally, and we can’t get in to see you any more. Is there any way you could… • Can you make rounds on the 32-bed HD nursing home unit, and maybe give an annual HD training session for the staff? YES, YES, and YES!
  51. 51. “I am so glad that you came to clinic today.” Vicki Wheelock MD
  52. 52. Talk to the kids • Listen to the kids • Say “Yes” to the kids • (most) kids someday become adults. They are the future. Empower them, learn from them, teach them, mentor them……. • (I am old enough that “kid” is anyone under the age of 40 [50?])
  53. 53. Net result • Patients/families/community that are • EDUCATED • EMPOWERED • ENGAGED • PREPARED • PROACTIVE • GROWING
  54. 54. Hoopathon 13 years $750,000 raised Run by a 10-24 year old HD family member
  55. 55. LIVING in the Group Home Opened/run by an HD family member 2 homes, 4 patients/home
  56. 56. Getting nails painted at the nursing home HD specialty unit at Good Samaritan Society Care facility since 1993 32 bed unit for people with HD
  57. 57. An assortment of nails!
  58. 58. Being on your daughter’s wedding invitation Golf tournament organized by this patient’s hockey buddies Held for 12 years, supported the family and the local chapter
  59. 59. Who better to write an HD cookbook…. Than people with HD and their families!
  60. 60. HD Youth Organization International organization for youth/young adults Web site/chat room HD Camp (2nd year) had 55 attendees Co-founded by the same person who ran the Hoopathon
  61. 61. Skydiving Lucy (on vacation from the nursing home) in the sky (with a good-looking guy) with diamonds
  62. 62. Running a marathon All Walks Of Life Set To Run In Twin Cities Marathon Place: 4209 Sex Place: 2738 Div Place: 233 Bib #: 5956 Time: 4:16:50 Pace: 9:48 City: Minneapolis, MN Sex: M
  63. 63. Painting a mural