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. Care Models for Huntington Disease Friday, November 4 3:30-5:00pm Chair: Karen Anderson, MD MedStar Georgetown University Hospital
- 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. HD REACH Huntington Study Group Annual Meeting Mary C. Edmondson, MD November 4, 2016
- 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. 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. 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. Pattern of HD Reach Engagement CLIENTSHDREACHSERVES DIFFERENTSCALES Projected Actual
- 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. 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. 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. 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. 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. • Multidisciplinary center • Satellite clinics • HDYO youth outreach program Community Efforts at GU
- 15. • Social work support • Neurological care • Psychiatric/neuropsychiatric care • Neuropsychological memory evaluation • Genetic counseling and testing • Physical & Occupational Therapy consults Multidisciplinary
- 16. • Home clinic at GU • Satellite clinic in suburban Maryland • Second Satellite in suburban Virginia Use of Satellite clinics in the HD CERC
- 18. • 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
- 19. HDYO Expands Geographical Reach
- 20. HDYO
- 21. CURA FAMILIA
- 22. A Generalist’s Perspective for HD Care Delivery LaVonne Veatch-Goodman, M.D. The Everett Clinic (TEC) Washington State
- 23. 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
- 24. Washington State: COE 15% The other 85%?
- 25. 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%
- 26. 15% is a mountain from the center perspective But for the HD population outside of centers care is lacking
- 27. 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)
- 28. 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
- 29. What does a generalist need to provide HD (or other) care? My guideline story: Working with the experts
- 30. 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
- 31. 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
- 32. 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
- 33. 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
- 34. Thank you! Please fill out the session survey in Grupio.
- 35. HD CARE MODEL Martha A. Nance MD Director, HD Center of Excellence, Hennepin County Medical Center Medical Director, Struthers Parkinson’s Center
- 36. 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
- 38. Medical care Stage 1-2 Diagnostic evaluation Giving the diagnosis Care of HD symptoms Medical and dental care Wellness Medical Care
- 40. Medical care Stage 1-2 Diagnostic evaluation Giving the diagnosis Care of HD symptoms Medical and dental care Wellness Medical care
- 43. Symptom management Other psychiatric symptoms Depression/ anxiety Cognitive dysfunction Chorea/ dystonia Sleep disturbances Weight loss Symptom management Stage 3 Oral-motor dysfunction Falling
- 44. Oral-motor dysfunction Video Swallow study Bedside Swallow exam Discuss Gastrostomy tube Speech evaluation Communication devices Change food textures Stage 3 Oral-motor dysfunction
- 45. 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
- 47. Give your clinic a name • Let’s write the grandparents a letter every month • The Trusheim Times
- 48. 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…
- 49. 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
- 50. 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?
- 51. 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!
- 52. “I am so glad that you came to clinic today.” Vicki Wheelock MD
- 53. 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?])
- 54. Net result • Patients/families/community that are • EDUCATED • EMPOWERED • ENGAGED • PREPARED • PROACTIVE • GROWING
- 55. Hoopathon 13 years $750,000 raised Run by a 10-24 year old HD family member
- 56. LIVING in the Group Home Opened/run by an HD family member 2 homes, 4 patients/home
- 58. 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
- 59. An assortment of nails!
- 60. 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
- 61. Who better to write an HD cookbook…. Than people with HD and their families!
- 62. 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
- 63. Skydiving Lucy (on vacation from the nursing home) in the sky (with a good-looking guy) with diamonds
- 64. 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
- 65. Painting a mural