Download Parkinson Disease - National Parkinson Foundation Greater

The Next Generation of Research
and Care
Annual Parkinson symposium
April 8, 2017
Outline
• Next generation research
• Next generation care
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Outline
• Next generation research
• Next generation care
3
Health care needs a new class of measurements
that can provide high frequency data
Social Physics
# measurements
per person
per minute
Current clinical
trials
*
Framingham Heart
Study
Duration of observation
Source: Modified from Pentland A. Social Physics: How Social Networks Can Make Us Smarter. New York, Penguin Books, 2015.
4
In 2015 Apple announced the release of
smartphone applications for medical research
mPower smartphone application for Parkinson disease
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These apps can detect responses from medications
Tapping frequency in individual with Parkinson disease before and after medication
After levodopa
Before levodopa
Source: Sage Bionetworks
6
Early analyses suggest mPower assessments
correlate with standard clinical assessments…
MDS-UPDRS Part 3, motor exam score (clinician rated)
Correlation between mPower’s finger tapping and MDS-UPDRS part 3 (motor) scores
Number of taps
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You can become a research partner and help us
better manage the symptoms of PD together
If you are interested in joining our team’s study, please
contact our study coordinator – Molly Elson:
Phone: (585) 276-6825
Email: [email protected]
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Recently, with your help, we conducted a pilot study to
assess wearable sensors for multiple neurological disorders
MC10 BioStampRC
Sensor-MD Overview:
•
•
•
Source: http://www.mc10inc.com/our-products/biostamprc
We enrolled 61 participants
• 19 with Parkinson disease
• 15 with Huntington disease
• 5 with prodromal Huntington
disease
• 22 without a movement disorder
Participants wore 5 sensors on their chest
and limbs
Aims of the study:
• Assess feasibility of data collection
• Compare sensor data to standard
clinical assessments
• Develop algorithms to characterize
abnormal movements
• Assess response to medication
• Detect and quantify previously
unmeasured symptoms
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These sensors can detect symptomatic changes
due to medication
Spectrogram of energy distribution as a function of frequency for a PD participant with rest tremor
Harmonics
Harmonics
Parkinson disease tremor
frequency signature
Source: Sensor-MD study (confidential)
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In addition, they can also objectively capture lifestyle
attributes that reflect previously unknown symptoms
Proportion of time in each state
Proportion of day individuals spend lying down, sitting, standing, and walking
Stand/Sit
Stand/Sit
Walking
Walking
Standing
Standing
Stand/Sit
Walking
Standing
Sitting
Sitting
Preliminary
Stand/Sit
Walking
Standing
Sitting
Sitting
Lying
down
Lying
down
Control
(n=20)
Mean age: 58
Parkinson
Disease
(n=16)
Mean age: 68
Source: Sensor-MD study (confidential)
Lying
down
Huntington
disease
(n=15)
Mean age: 55
Lying
down
Prodromal Huntington
disease
(n=5)
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Mean age: 38
In addition to our smartphone and wearable sensor
studies, we have other trials currently enrolling
Buspirone in PD – Dr. Ruth Schneider
•
•
•
Study testing tolerability of an anxiety medication
called buspirone (Buspar).
Seeking individuals who have both Parkinson disease
and anxiety and do not anticipate making changes to
their Parkinson, anxiety or depression medications in
the next 3 months
Seeking individuals who do not have: liver or kidney
impairment, drug/alcohol dependence, previous
exposure to buspirone
Contact Julia Iourinets at 585-341-7433
or [email protected]
for more info
TOZ-PD – Dr. Rich Barbano
•
•
•
Study testing the efficacy of a medication called
tozadenant
Seeking individuals who are experiencing end-ofdose wearing off while taking levodopa at least 4
times per day in addition to another PD
medication
Seeking individuals who have been diagnosed at
least 3 years ago
Contact Ashley Owens at 585-341-7593
or [email protected]
for more info
Outline
• Next generation research
• Next generation care
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Current care for PD has some flaws
How different care models meet the needs of individuals with Parkinson's disease
Feature
Individuals with
Parkinson’s disease
Current care models
Home-based care
Location
Primarily suburban and rural
areas
Primarily urban centers
Where the individual is
located
Driving
Impaired ability
Usually requires driving
Little or no driving required
Mobility
Limited
Generally required to access
care
Not required to access care
Cognition
Frequently impaired
Often demanding to
navigate
Less demanding to receive
Disease course
Progressive
Least accessible for those
with the most advanced
disease
Accessible to those with
greatest need
Caregivers
Burdened
Increases the burden
Can reduce the burden
Source: Mov Disord. 2016 Sep;31(9)
We recently completed the largest national randomized
controlled trial of telemedicine into the home
Randomized controlled trials of telemedicine providing care into a patient’s home
Study (year)
Condition
N
Sites
Findings
National randomized controlled trial of virtual
house calls for individuals with Parkinson disease
(Connect.Parkinson) (2016)
Parkinson
disease
195
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• Providing specialty care into the homes of individuals
with Parkinson disease was feasible
• Not more efficacious than usual in-person care
• Satisfaction was higher in the telemedicine group
Randomized controlled clinical trial of “virtual house
calls” for Parkinson disease. (2013)
Parkinson
disease
20
2
• Virtual house calls were feasible
• As effective as in-person care
A randomised trial of a remote home support
programme for infants with major congenital heart
disease. (2012)
Congenital
heart defects
83
2
• Clinicians were more confident in treating patients in
video visits vs. telephone
• Parents were satisfied with video visits
• Healthcare resource utilization was lower in telemedicine
group
A new multidisciplinary home care telemedicine
system to monitor stable chronic human
immunodeficiency virus-infected patients: a
randomized study (2011)
HIV
83
2
• Satisfaction with Virtual Hospital was high
• Clinical outcomes were similar for both groups
Home videoconferencing for patients with severe
congenital heart disease following discharge (2008)
Severe
congenital
heart disease
30
1
• Videoconferencing decreased anxiety levels compared to
telephone and allowed better clinical information
Functional and Clinical Outcomes of Telemedicine in
Patients With Spinal Cord Injury (2008)
Spinal cord
injuries
137
4
• Telemedicine patients at one out of four sites had
statistically significant better functional improvement
• Satisfaction was high higher in the telemedicine group
Telemedicine improved diabetic management (2000)
Type II
diabetes
28
1
• Some clinical outcomes improved significantly more in the
telemedicine group
• Quality of life was unchanged
Sources: Connect.Parkinson, JAMA Neurol. 2013;70(5):565–570., Heart. 2012;98(20):1523–1528., Congenit Heart Dis. 2008;3(5):317–324., PLoS
One. 2011;6(1):e14515., Mil Med. 2000;165(8):579–584., Arch Phys Med Rehabil.2008;89(12):2332–2341.
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Connect.Parkinson was conducted nationally
In collaboration with:
Source: Connect.Parkinson study
16
Over 11,000 individuals from 80 countries and 50
states visited the study website
Map of visitors to Connect.Parkinson website
Source: Connect.Parkinson study
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Ultimately, 195 participants were randomized
Map of Connect.Parkinson participants (n = 195)
On average, participants were 66 years old,
were 47% female, had a disease duration of 8 years,
and 97% used internet at home
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Virtual house calls are feasible and valuable but
not more (or less) effective than traditional care
Results from the Connect.Parkinson study
Feasibility
• Out of the 97 individuals randomized to receive virtual house calls,
95 completed at least one virtual house call (98%)
• Of the total 388 virtual house calls, 91% were completed as
scheduled
• Evaluated using the Parkinson Disease Questionnaire 39 (PDQ-39)
Quality of life • Between the two groups there was no significant change in the PDQ39 as the mean difference was 0.3 points (p = 0.78)
Quality of
care
Value
• Between the two groups there was no significant change in the
quality of care as the mean difference was 0.0 points (p = 0.79)
• Patients saved a median of 88 minutes per visit (p < 0.0001)
• Patients saved a median of 38 miles round-trip per visit (p < 0.0001)
Source: Connect.Parkinson study.
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Patients receiving virtual house calls indicated a
greater improvement in their PD overall
Patient Global Impression of Change
45
p = 0.0039
40
Percentage of participants
35
30
25
20
15
10
5
0
No change (or
condition has gotten
worse)
Almost the same,
A little better, but no Somewhat better, but
hardly any change at
noticeable change
the change has not
all
made any real
difference
Virtual house calls (n = 90)
Source: Connect.Parkinson study
Moderately better,
and a slight but
noticeable change
Better, and a definite A great deal better,
improvement that has and a considerable
made a real and
improvement that has
worthwhile difference made all the difference
Usual care (n = 89)
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Patients were very satisfied with virtual
house calls
Patient satisfaction with virtual house calls (n = 320)
Very Satisfied
Satisfied
Neutral
Unsatisfied
Very Unsatisfied
Technical quality
of connection
Care
Convenience
Comfort
Overall
0%
20%
40%
60%
80%
100%
Percent of patients
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Source: Connect.Parkinson study
Patients found care, convenience, and comfort
in virtual house calls
Selected patient feedback
Care
Convenience
•
•
•
“Excellent, just wish these visits could continue.”
“Excellent help accompanied by warmth, compassion and expertise.”
“The regular intervals of seeing my neurologist through a virtual visit
allowed my neurologist to treat more of my symptoms that emerged
gradually... I do not have that kind of awareness of how my PD is gradually
changing in once-a-year visit with my regular neurologist.”
•
“As my wife and I live a long way from the nearest neurologist, this
technology is a blessing.”
“To get to be seen by a PD specialist I would have to drive 175 miles from
my doorstep to the specialist’s office or farther, 309 miles.”
•
•
Comfort
Source: Connect.Parkinson study
•
“I find it easier to be more comfortable expressing my PD via a remote
device than I do during a face-to-face visit.”
“I really felt comfortable and did not feel like I was missing anything crucial
by not being there in person. It's so nice to not have to get in the car to go
to an appointment!!”
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Overall, patients preferred virtual house calls to
in-person visits on a variety of aspects
Participants relative preference of virtual house calls (n = 68)
Favors virtual
house calls
Strongly Agree
Agree
Neutral
Disagree
Strongly Disagree
Favors in
person visits
Better personal
connection
Better care
More convenient
More comfortable
Prefer virtual
visits overall
0%
Source: Connect.Parkinson study
20%
40%
60%
80%
100%
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Telemedicine is poised for exponential growth,
which is occurring in Canada…
Number of telemedicine visits by Ontario Telemedicine Network, 2009-2014
250,000
200,000
150,000
Urban
100,000
50,000
Rural
2009
2010
Source: O’Gorman LD et al. Telemedicine and e-Health 2016;22:473-9
2011
2012
2013
2014
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…and beginning to do so in the US
Projected number of office visits in the U.S., 2015 – 2025
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We are now offering any New Yorker with Parkinson
disease the ability to receive care for free
Who: Any New Yorker with Parkinson disease
What: Multidisciplinary care + optional use of smartphone to track disease
When: Now
Where: New York state, especially the 9 counties surrounding Rochester
Why: To provide PD care to residents of New York state, especially the underserved
How much: Free
Supported by: Greater Rochester Health Foundation & the Edmond J. Safra Foundation
Visit our booth here
Visit www.pdcny.org or
Call 1-844-77-PDCNY (1-844-777-3269)
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