pass & nacc ftd study daisy sapolsky, ms, ccc-slp speech language pathologist mgh frontotemporal...
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PASS & NACC FTD Study
Daisy Sapolsky, MS, CCC-SLPSpeech Language PathologistMGH Frontotemporal Disorders UnitMGH Department of Speech, Language and Swallowing Disorders & Reading Disabilities
National Alzheimer’s Coordinating Center (NACC)
NACC overview: Alzheimer’s Disease Centers (ADCs) were
established in 1984 MGH was one of the first five to receive grants
NACC was then established in 1999 by the National Institute on Aging
To facilitate collaborative research among the 29 ADCs nationwide
NACC maintains a large database of the data collected at these visits, which is a valuable resource for ongoing research
http://www.alz.washington.edu/
National Alzheimer’s Coordinating Center (NACC)
NACC overview:
Participation in NACC involves annual visits neurological examination and interview neuropsychological testing interview with a relative/friend
MGH NACC cohort includes: 709 people being actively followed 320 people with normal cognition 330 people with some form of MCI 266 people with some form of dementia
NACC FTD Study
NACC FTD study: In pilot phase for the past year (6 centers)
MGH ready to begin administration of the NACC FTD module
Goals:To capture the cognitive changes of FTD
through use of a tailored evaluationTo collect uniform data on patients with FTD
from centers across the country data may be helpful in clinical trial design
Clinical Dementia Rating (CDR)
Tools for quantifying severity and progression of dementia: Clinical Dementia Rating (CDR) 5-point scale to rate stages of dementia
no cognitive impairment to severe impairment six domains of functioning are assessed through interview
and patient performance on testing Memory, Orientation, Judgment and Problem solving,
Community Affairs, Home and Hobbies, Personal Care two supplemental domains added in 2006:
behavior and language
Progressive Aphasia Severity Scale (PASS)
PASS (2008) A “big picture” clinical tool to rate symptom
severity in a variety of speech/language domains in people with progressive aphasia Modeled after the CDR supplemental language
box, a rating of overall language impairment Clinicians use their judgment to rate presence and
severity of impairment in each domain, capturing change from the patient’s baseline
Progressive Aphasia Severity Scale (PASS)
Captures information about symptoms, whereas performance-based testing captures signs of impairment; Presumably the two together will provide
more information than either aloneSome patients perform surprisingly better on
testing than in daily life; Others are much more capable of
communicating in conversation than they are of performing on tests
Progressive Aphasia Severity Scale (PASS)
All domains rated from normal to severe impairment, like the CDR:
0 (normal), 0.5 (questionable), 1 (mild), 2 (moderate), 3 (severe) Articulation Syntax/grammar Fluency Word retrieval and expression Repetition Auditory comprehension Single word comprehension Reading Writing Functional communication
Progressive Aphasia Severity Scale (PASS)
Progressive Aphasia Severity Scale (PASS) 5.1 (Sept 16, 2009)
Patient Name: Primary mode of expression (speech, writing, gesture, etc.):
Visit Date and Type: Rater name: 0 0.5 1
normal questionable/very mild impairment mild impairment
ARTICULATION: ability to say sounds and syllables accurately and effortlessly Normal articulation.
Occasional misarticulation and/or effortful or hesitant speech, or dysarthria; difficulty repeating "pa ta ka" and/or pronouncinng multi-syllabic words; 100% intelligible.
Mild and consistent difficulty with articulation; most utterances are intelligible.
FLUENCY: degree to which speech flows easily or is interupted by hesitations, fillers, pauses; reduced fluency is associated with decreased phrase length and words per minute (WPM) Normal flow of speech.
Speech contains occasional blank pauses or use of fillers (umm); reduced WPM and/or phrase length.
Speech is in short phrases, interrupted with pauses or groping for words but there are occasional runs of fluent speech.
SYNTAX AND GRAMMAR: use of word forms (run, ran), functor words (the, an), and word order when forming phrases and sentences in most used modality (speech or writing)
No difficulty in the use of grammar and syntax.
Occasional agrammatism or paragrammatism (i.e., odd sentence structure such as, "I my car drive in your house."); may complain it is effortful to combine words into phrases or sentences
Frequent agrammatism; sentence structures are simple; frequent misuse/ommission of grammatical words or morphology
WORD RETRIEVAL AND EXPRESSION: ability to express the intended word through most used modality (speech or writing)
Difficulty limited to rare word-finding problem or tip-of-the tongue feeling.
Noticeable word-finding pauses during conversation or testing; may substitute a more common word or provide a description of the word (circumlocution); expresses message with most details; may use stereotyped phrases.
Word finding difficulty (pauses or struggling) occurs several times in a 5-minute conversation; difficulty naming common objects; occasional semantic or phonemic paraphasias; expresses overall message with few details.
http://www.ftd-boston.org/
PASS profile: Patient A
0
1
2
3
Artic
Fluency
Synta
x
Word
Ret
rieva
l
Repet
ition
Aud C
omp
Single
Wor
d Com
p
Readi
ng
Writ
ing
Funct
Glob
al
PA
SS
rat
ing
Baseline
Follow up
Decline was most significant in the areas that were initially affected while preserved domains remained areas of strength.
Relatively fast progression of symptoms.
PASS profile: Patient B
0
1
2
3
Artic
Fluency
Synta
x
Word
Ret
rieva
l
Repet
ition
Aud C
omp
Single
Wor
d Com
p
Readi
ng
Writ
ing
Funct
Glob
al
PA
SS
rat
ing
Baseline
Follow up
Ratings were stable or changed only slightly (0.5) over 2 years, indicating a relatively slow rate of progression with many areas of relative strength.
Relatively slow progression of symptoms.
Progressive Aphasia Severity Scale (PASS)
Potentially useful for:Generating a profile of strengths and
weaknessesDetermining PPA subtypeMonitoring disease progressionCapturing response to treatment in clinical
trialsspeech-language therapydrug treatments
PASS Paper
Neurology, 2010
NDM Paper
Neurodegenerative Disease Management, 2011
PASS – Next Steps
Next steps:Continue longitudinal analysis on the
performance of the PASS and imaging methods as clinical and imaging markers for diagnosis and monitoring
Partner with other centers in the U.S. and worldwide to use the PASS
Training materials in development
Global partners in using PASS
Central Michigan UniversityNorthwestern University
University of California, San Francisco
International interest:Nantes University Hospital, Nantes, FranceWar Memorial Hospital, Sydney, Australia
Questions
Questions?
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