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Care Modelsfor Huntington Disease
Friday, November 43:30-5:00pm
Chair: Karen Anderson, MDMedStar Georgetown University Hospital
Presenters
HSG 2016: DISCOVERING OUR FUTURE
Dan Claassen, MDVanderbilt UniversityRebecca Ferrini, MDEdgemoor HospitalMartha Nance, MDStruthers Parkinson's
Center
Mary Edmondson, MDHD Reach
LaVonne Goodman, MDHD Drug Works
HD REACHHuntington Study Group Annual MeetingMary C. Edmondson, MDNovember 4, 2016
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
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
SupportCommunit
y
Provider Network
Education Platform
Population affected by HDLocation 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
Pattern of HD Reach EngagementCL
IENT
S HD
REA
CH S
ERVE
S D
IFFE
REN
T SC
ALES
Projected
Actual
Care Models for HD
Karen E. Anderson, M.DAssociate Professor, Psychiatry & NeurologyDirector, HSDA COE at Georgetown University, Care, Education and Research Center
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?
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)
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 ?
Care-comprehensive services
• Education- training clinicians in all disciplines
• Research- new medications for symptoms and slowing disease progression
• Center- but with outreach
HD CERC
• Multidisciplinary center
• Satellite clinics
• HDYO youth outreach program
Community Efforts at GU
Multidisciplinary
• Social work support
• Neurological care
• Psychiatric/neuropsychiatric care
• Neuropsychological memory evaluation
• Genetic counseling and testing
• Physical & Occupational Therapy consults
Multidisciplinary
• Home clinic at GU
• Satellite clinic in suburban Maryland
• Second Satellite in suburban Virginia
Use of Satellite clinics in the HD CERC
• 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
HDYO Expands Geographical Reach
HDYO
CURA FAMILIA
A Generalist’s Perspective for HD
Care DeliveryLaVonne Veatch-Goodman, M.D.
The Everett Clinic (TEC)Washington State
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
Washington State: COE 15% The other 85%?
HDSA national data: 13%-15% seen in other U.S. centersCHDI 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
Tota
l Num
ber o
f HD
patie
nts
in p
ast 2
4 m
onth
s
Neurology Internal Med Family Practice Undefined Spec Psychiatry
Physicians by Specialty
Undef8%
Psychiatry3%
Fam Prac21%
Neuro39%
IM29%
15% is a mountain from the center perspective
But for the HD population outside of centers care is lacking
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)
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
What does a generalist need to provide HD (or other) care?
My guideline story: Working with the experts
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
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
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 psychiatristLearning from the experts: Expert Practice
Guidelines
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
Thank you!
Please fill out the session survey in Grupio.
HD CARE MODELMartha A. Nance MD
Director, HD Center of Excellence, Hennepin County Medical CenterMedical Director, Struthers Parkinson’s Center
0 Age (Years)
Diagnosis Death
Total Functional Capacity(0-13 points)
Disease milestones
Suicide gesture Marriage
First child born
Suicide attempt
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 16 18 20 22 24 26 28 30 32 34 36 38 40 42 44 46 48 50 52 5402468
101214
Age (Years)
Progression of symptoms and disabilityin a typical patient with Huntington’s disease
Life milestones
Stage 1: changes in work, role within familyStage 2: issues with work, driving, finances;
able to live at home with minimal supportStage 3: impaired ADLs, needs supervisionStage 4: needs assistance with ADLs, 24 hour care appropriateStage 5: needs assistance with all ADLs; progression to terminal stages
pHD
Family
extended
spouseat-risk
Managecrises
Education
Medicalcare
Research
Family issues
Function
Prepare forfuture
The HD molecule
Medical care
Stage 1-2
Diagnosticevaluation
Giving thediagnosis
Care of HDsymptoms
Medicaland dental
care
Wellness
Medical Care
Wellness
Enjoy work,leisure
activities
Goodnutrition
Spiritualhealth
?Vitamins
Community-building
Exercise
Wellness
Stage 1-2
Medical care
Stage 1-2
Diagnosticevaluation
Giving thediagnosis
Care of HDsymptoms
Medicaland dental
care
Wellness
Medical care
Symptommanagement
Otherpsychiatricsymptoms
Depression/anxiety
Cognitivedysfunction
Chorea
Sleepdisturbances
Weight loss
Symptom management
Stage 1-2
Cognitivedysfunction
Functionalassessment
Cognitive training
?Medication
Neuropsychassessment
Familycounseling
Cognitive management
Stage 1-4
Symptommanagement
Otherpsychiatricsymptoms
Depression/anxiety
Cognitivedysfunction
Chorea/dystonia
Sleepdisturbances
Weight loss
Symptom management
Stage 3
Oral-motordysfunction
Falling
Oral-motordysfunction
VideoSwallow
study
BedsideSwallow exam
DiscussGastrostomy
tube
Speech evaluation
Communicationdevices
Change foodtextures
Stage 3
Oral-motor dysfunction
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
Recommendations for clinicians
Give your clinic a name
• Let’s write the grandparents a letter every month• The Trusheim Times
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…
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
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?
YES
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!
“I am so glad that you came to clinic today.”Vicki Wheelock MD
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?])
Net result
• Patients/families/community that are• EDUCATED• EMPOWERED• ENGAGED• PREPARED• PROACTIVE• GROWING
Hoopathon
13 years$750,000 raised
Run by a 10-24 year oldHD family member
LIVING in the Group Home
Opened/run by an HD family member
2 homes, 4 patients/home
Getting nails painted at the nursing home
HD specialty unit at Good Samaritan SocietyCare facility since 1993
32 bed unit for people with HD
An assortment of nails!
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
Who better to write an HD cookbook….
Than people with HD and their families!
HD Youth Organization
International organizationfor youth/young adults
Web site/chat roomHD Camp (2nd year) had55 attendees
Co-founded by the sameperson who ran the Hoopathon
Skydiving
Lucy(on vacation from the nursing home)in the sky(with a good-looking guy)with diamonds
Running a marathon
Marathoner's mission:
Don't let homelessness,
Huntington's winAll Walks Of Life Set To Run In Twin Cities Marathon
Place: 4209Sex Place:
2738
Div Place:
233
Bib #: 5956Time: 4:16:50Pace: 9:48City: Minneapolis, MNSex: M
Painting a mural