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