Movement Disorders

Vol. I I , No. 2, 1996, pp. 1 3 6 1 4 2

Q 1996 Movement Disorder Society
m “PP M NT

Unified Huntington’s Disease Rating Scale:

- Reliability
and-Consistency,

Huntington Study Group

Summary:! The Unified Huntington’s Disease Rating the domains of the UHDRS, with the exception of the
Scale (UHDRS) was developed as a clinical rating scale total behavioral score. There was an excellent degree of
to assess four domains of clinical performance and capac- interrater reliability for the motor scores. Our limited lon-
ity in HD: motor function, cognitive function, behavioral gitudinal database indicates that the UHDRS may be use-
abnormalities, and functional capacity. We assessed the ful for tracking changes in the clinical features of HD over
internal consistency and the intercorrelations for the four time. The UHDRS assesses relevant clinical features of
domains and examined changes in ratings over time. We HD and appears to be appropriate for repeated adminis-
also performed an interrater reliability study of the motor tration during clinical studies.\ Key Words: Huntington’s
assessment. We found there was a high degree of internal disease-Cognitive function-Behavioral abnormali-
consistency within each of the domains of the UHDRS ties-Functional capacity-Clinical research.
and that there were significant intercorrelations between

Huntington’s disease (HD) is an autosomal dom- sures of HD including the duration of illness, de-
inant neurodegenerative illness characterized by fined as the time from the onset of choreic move-
disorders of movement, cognition, behavior, and ments to the time of death (7). The HSG investiga-
functional capacity. The investigators of the Hun- tors agreed to prospectively evaluate all patients
tington Study Group (HSG) collaborate to develop with HD and individuals at risk for HD using a sin-
and examine experimental therapies to treat this gle instrument which combined many of the impor-
progressive disorder. We are particularly interested tant elements of these scales.
in assessing interventions that may forestall neuro- After several months of pilot experience, the in-
nal degeneration and clinical decline. To this end, vestigators formulated a new hybrid scale to assess
the HSG has developed the Unified Huntington’s four main domains of clinical performance and ca-
Disease Rating Scale (UHDRS), a comprehensive pacity: motor function, cognitive function, behav-
and reliable instrument to assess the clinical fea- ioral abnormalities, and functional capacity. Em-
tures of HD. phasis was placed on clinical features that were
Several instruments and rating scales are cur- likely to show rapid progression and on assess-
rently used to assess features of HD including the ments that could be made during a relatively brief,
quantitated neurological exam (QNE) ( l ) , the HD -30 min, examination. Neurologists, psychiatrists,
functional capacity scale (HDFCS) ( 2 ) , the HD mo- neuropsychologists, and other professionals partic-
tor rating scale (HDMRS) ( 3 ) , the Physical Disabil- ipated in the drafting of the final version of the UH-
ity and Independence scales (4), Marsden and DRS. We report our analysis of the internal consis-
Quinn’s chorea severity scale (3,the HD Activities tency and interrelationships of the four domains of
of Daily Living scale (6), and other relevant mea- the UHDRS and provide pilot results on longitudi-
nal changes in UHDRS scores.
A videotape segment accompanies this article.
Accepted June 13, 1995. METHODS
Address correspondence and reprint requests to Dr. K .
Kieburtz at Box 673, Department of Neurology, University of Subjects
Rochester Medical Center, 601 Elmwood Ave., Rochester, NY
14642, U.S.A. Data from the final version of the UHDRS have
A full list of authors appears in Appendix I . been collected prospectively on 489 patients with

136
 UNIFIED HUNTINGTON’S DISEASE RATING SCALE 137

manifest HD from 20 sites in North America and of correct answers given in a 45-s period. Results
Europe. Of this group, 229 were men (46.8%), 227 for the other tests are reported as the raw number of
were women (46.4%), and the gender of 33 (6.7%) correct responses. Higher scores indicate better
was unknown. Four hundred and twenty-six pa- cognitive performance.
tients were white (87.1%), 15 black (3.1%), and race The behavioral assessment measures the fre-
was unknown in 48 (9.8%). One hundred and ninety quency and severity of symptoms related to affect,
patients (38.9%) inherited HD from their mother, thought content and coping styles. The total behav-
211 inherited from their father (43.1%), and the af- ior score is the sum of all responses; however, this
fected parent was unknown in 88 (18.0%). Other score may have less usefulness than the individual
characteristics of the cohort are listed in Table 1. subscale scores for mood, behavior, psychosis and
obsessiveness which are created by summing the
UHDRS responses to the corresponding questions. The eval-
The final version of the UHDRS has four compo- uator is also requested to provide a clinical impres-
nents assessing motor function, cognition, behavior sion as to whether the patient, at the time of the
and functional abilities. The UHDRS is reprinted in evaluation, has clinical evidence of confusion, de-
Appendix 2 and copies of the examination guide- mentia, or depression and whether the patient re-
lines are available by request. quires antidepressant therapy, according to preset
The motor section of the UHDRS assesses motor definitions in the examination guidelines. Higher
features of HD with standardized ratings of oculo- scores on the behavior assessments indicate more
motor function, dysarthria, chorea, dystonia, gait, severe disturbance than lower scores.
and postural stability. A demonstration of the tech- The functional assessments include the HDFCS,
niques of the motor exam and examples of each the Independence scale and a checklist of common
grade of abnormality are .provided on the accompa- daily tasks. For the latter items, the investigator
nying videotape. The total motor impairment scores indicates if the patient could perform the task. The
is the sum of all the individual motor ratings, with checklist is summed by giving a score of 1 to all
higher scores indicating more severe motor impair- “yes” replies. The HDFCS is reported as the total
ment than lower scores. functional capacity (TFC) score. This scale has es-
Cognitive operations are assessed by a phonetic tablished psychometric properties including inter-
verbal fluency test (8), Symbol Digit Modalities rater reliability and validity, based on radiographic
Test (9), and the Stroop Interference Test (10). The measures of disease progression (1 1,12). The inde-
Stroop Test results are reported as the raw number pendence scale is rated from 0 to 100. Higher scores
on the function scales indicate better functioning
than lower scores.
TABLE 1. UHDRS baseline characteristics In = 489)
Mean SD Range Internal Consistency
Age 49.6 13.1 11-91 We performed Cronbach’s alpha analyses to ex-
Age onset HD 41.0 12.7 6-74 amine the internal consistency of the motor, cogni-
Duration HD 8.9 5.2 1-35
Total motor score 47.2 22.0 5-106 tive, behavioral and functional checklist compo-
Verbal fluency 16.3 10.2 W 2 nents of the UHDRS. We performed correlational
Symbol digit 21.0 10.8 0-50
Stroop test analyses comparing the four components of the
Color 52.7 21.3 &I00 UHDRS. Specifically, Spearman rank order corre-
Word 38.8 16.5 0-92
Color word 21.3 10.9 &58 lation coefficients were calculated comparing the
Total behavior score 11.9 10.3 &51 total motor score, each cognitive test, the behavior
Subscales
Mood 6.1 6.3 0-29 score and each subscale, and the three functional
Behavior 4.0 4.2 0-14 scores.
Psychosis 0.4 1.6 0-10
Obsessive 1.5 3.1 &I6
Behavioral milestones Interrater Reliability
Confused (%) 17.0
Demented (%) 43.8 The reliability of the motor component of the
Depressed (%) 30.4 UHDRS was examined among three clinicians who
Requiring treatment for depression (%) 39.8
Functional checklist score 15.9 7.2 &25 were experienced with the evaluation of patients
Independence scale 72.3 19.9 10-100 with HD. Twenty-four patients were each rated by
TFC 6.6 3.8 0-13
two of the three clinicians, with the clinicians eval-

Movement Disorders, Vol. 11, No. 2 , 1996

138 HUNTINGTON STUDY GROUP

uating the patients independently. Each clinician higher psychosis and obsessive subscale scores cor-
rated 16 patients. Raters did not discuss their rat- related with lower functional scores.
ings with each other after individual assessments
and remained unaware of each other's scores Interrater Reliability
throughout the study. The interrater reliability of The 24 patients in the reliability study included 14
the total motor scores, and of the chorea and dys- men and 10 women, with an average age of 48.0 *
tonia scores, were assessed by intraclass correla- 16.4 (mean 2 SD) and duration of HD for 9.0 ? 5.5
tion. *
years. TFC scores were 8.0 3.4 with a range of
3-13. The intraclass correlation coefficient was 0.94
Longitudinal Data for the total motor score, 0.82 for the chorea score,
Longitudinal rates of change for the motor, HD- and 0.62 for the dystonia score.
FCS, and cognitive components were available
Longitudinal Data
since these items had not changed substantially
from prior versions of the UHDRS. Rates of change Longitudinal data were available for motor scores
were obtained by fitting a least squared line to the on 180 patients, for the TFC on 202 patients, and for
data from patients who had been reevaluated with cognitive tests in -130 patients. Patients were fol-
examinations at least 4 months apart and are ex- lowed for 8.0 k 2.4 months (range, 4.1-19.6
pressed as the rate of change per 6 months. For the months). Table 3 lists the average change in each
motor and functional sections, only exams per- score, over a 6-month period.
formed by the same clinician were included in the
CONCLUSION
analyses.
We found a high degree of internal consistency
RESULTS among the motor, behavioral, cognitive, and func-
tional components of the UHDRS. We also found
Internal Consistency there was a high degree of reliability among three
There was a high degree of internal consistency in different raters performing the motor assessment.
each of the four components of the UHDRS. Cron- The scores on the motor, cognitive and functional
bach's alpha values were 0.95 for the motor scale, components, including the previously validated
0.90 for the cognitive tests, 0.83 for the behavioral TFC scale, were highly intercorrelated, although
scale, and 0.95 for the functional checklist. Corre- the total behavioral score did not correlate well with
lational analyses (Table 2) showed that four compo- the other sections. However, the mood subscale
nents of the UHDRS were highly intercorrelated, was associated with better motor performance, a
with the exception of the total behavioral score finding consistent with the predominance of mood
which did not correlate with any of the other as- disorders in early HD. Additionally, the psychotic
sessments. However, higher mood subscale scores and obsessive disturbance subscales were associ-
correlated with better motor performance, and ated with functional impairment, consistent with

TABLE 2. Intercorrelations of UHDRS assessments

Motor VF Sym D S-W S-C S-CW Behav T S-M S-B s-P S-0 FC IND
Motor 1
VF *-0.60 1
Symbol digit *-0.65 '0.64 1
Stroop word *-0.63 $0.61 *0.77 1
Stroop color *-0.64 *0.64 '0.73 *0.85 I
Stroop color word * -0.57 *0.58 *0.69 *0.72 *0.66 I
Behavioral total -0.10 0.07 0.05 0.08 0.04 -0.03 1
Mood subscale *-0.19 0.15 0.14 0.12 0.09 0.06 *0.81 I
Behavior subscale 0.01 0.03 0.06 0.10 0.05 -0.02 *0.71 *0.31 1
Psychosis subscale 0.04 0.00 -0.05 -0.01 0.02 -0.01 "0.28 0.10 *0.19 1
Obsessive subscale 0.04 0.02 -0.04 -0.02 -0.02 -0.10 *O.51 *0.21 *0.29 *0.22 1
Functional checklist *-0.75 *0.59 *0.65 '0.60 *0.61 *0.58 -0.07 0.06 -0.13 *-0.14 *-0.14 1
Independence *-0.75 '0.58 *0.63 *0.62 *0.63 *0.54 -0.05 0.09 -0.13 '-0.14 -0.10 *O.YO I
TFC *-0.72 j0.58 *0.62 *0.58 *0.61 '0.52 -0.07 0.06 *-0.14 *-0.13 -0.12 *0.94 *O.Y2

* p < 0.005.
S-C. Stroop color; S-W, Stroop word; S-CW, Stroop color word; Behav T, behavioral total; S-M, subscale mood; S-B, subscale behavior; S-P, subscale
psychosis; S - 0 , subscale obsessive; FC, functional checklist; IND, independence; VF, verbal fluency; TFC, total functional capacity

Movement Disorders, Vol. 1 1 , N o . 2 , 1996

 UNIFIED HUNTINGTON’S DISEASE RATING SCALE 139

TABLE 3. Longitudinal changes in UHDRS (expressed eral Hospital; Peter Corno, Ph.D., University of Roches-
as units of channe per 6 months) ter Medical Center; Neal Ranen, M.D., Johns Hopkins
~~

University; Ira Shoulson, M.D., University of Rochester

Mean SD Range Medical Center.
Total motor (n = 180) 3.2 8.4 -21.6 to 33.5
VF (n = 142) 0.1 5.3 11.7 to 21.7 Participating Sites
Symbol digit (n = 131) -0.1 4.2 11.4 to 21.7
Stroop color word (n = 139) -1.3 13.1 - 103.0 to 44.7
Functional checklist (n = 171) -0.9 3.0 -9.1 to 12.8 University of Rochester Medical Center, Rochester, New
Independence (n = 180) -3.8 8.6 -41.3 to 29.0 York, U.S.A.: Andrew Feigin, M.D., David Abwender,
TFC (n = 202) -0.3 2.1 -7.2 to 19.6 Ph.D., J. Timothy Greenarnyre, M.D., Donald Higgins,
TFC where initial score 3 3 (n = 176) -0.5 1.6 -1.2 to 6.6
M.D., Frederick J. Marshall, M.D., Joshua Goldstein,
B.S., Kimberly Steinberg, B.A., Charles Shih, B.A.,
Irene Richard, M.D., Charlyne Hickey, R.N., Carol Zim-
the predominance of these disorders in the later merman, R.N., Constance Orme, Kathy Claude, M.S.,
stages of HD. These findings reflect the fact that David Oakes, Ph.D.
Boston University, Boston, Massachusetts, U.S.A.:
behavioral abnormalities, unlike the slow and fairly Daniel S. Sax, M.D., Anthony Kim, M.A.
steady deterioration in the other domains, are het- Emory University, Atlanta, Georgia, U.S.A.: Steven
erogeneous, episodic and without clear additive Hersch, M.D., Ph.D., Randi Jones, Ph.D., Alexander
temporal progression. Also behavioral disturbances Auchus, M.D., David Olsen, M.D., Cheryl Bissey-Black,
are the aspects of HD that are most amenable to R.N.
UMDNJ Robert Wood Johnson Medical School, Cam-
symptomatic intervention, and therefore are likely den, New Jersey, U.S.A.: Allen Rubin, M.D., Rose
to be less consistently observed over time. Schwartz, R.N.
The UHDRS assesses relevant clinical domains University of Kansas, Kansas City and Wichita, Kansas,
of HD and was designed for repeated administra- U.S.A.: Richard Dubinsky, M.D., William Mallonee,
tions during clinical research studies. We continue M.D., Carolyn Gray, R.N., Nan Godfrey, Greg Suter.
Rush-Presbyterian-St. Luke’s Medical Center, Chicago,
to prospectively collect UHDRS data and now have Illinois, U.S.A.: Kathleen M. Shannon, M.D., Glenn T.
accrued > 1,500 individuals with HD and individu- Stebbins, Ph.D., Jean A. Jaglin, R.N.
als at risk for HD. The preliminary longitudinal data Columbia University, New York, New York, U.S.A.:
suggest that the UHDRS may be useful for tracking Karen Marder, M.D., Stuart Taylor, M.D., Elan Louis,
clinical changes longitudinally in HD patients, al- M.D., Carol Moskowitz, R.N., Deborah Thorne, CSW,
Naomi Zubin, B.A., Nancy Wexler, Ph.D.
though further data are needed to establish its util- University of California San Diego Medical Center, San
ity. The UHDRS may be particularly suitable for Diego, California, U.S.A.: Michael R. Swenson, M.D.,
tracking clinical changes in the setting of controlled Jane Paulsen, Ph.D., Neal Swerdlow, M.D., Ph.D.
trials of experimental interventions. The UHDRS University of Michigan, Ann Arbor, Michigan, U.S.A.:
yields several scores assessing the primary features Roger Albin, M.D., Christine Wernette, M.S.N.
Bowman Gray School of Medicine, Winston Salem,
of HD (motor, cognitive, behavioral) as well as the North Carolina, U.S.A.: Francis Walker, M.D., Vicki
overall functional impact of these features; there- Hunt, R.N.
fore, the primary hypothesis of the clinical trial University Hospital Leiden, The Netherlands: Raymond
should determine the selection of the primary re- A.C. Roos, M.D., DSc.
sponse variable, while the other scales may serve as Massachusetts General Hospital, Boston, Massachusetts,
U.S.A.: Anne B. Young, M.D., Ph.D., Walter Koroshetz,
secondary response measures. Studies of the use- M.D., Edward Bird, M.D., Rick Meyers, Ph.D., Merit
fulness of the UHDRS in clinical trials are in prog- Cudkowicz, M.D.
ress. University of Toronto, Toronto, Ontario, Canada: Mark
Guttman, M.D., Jean St.-Cyr, Ph.D., Jill Burkholder,
APPENDIX 1 R.N.
Karolinska Hospital, Stockholm, Sweden: Anders Lun-
din, M.D.
The following persons and participating institutions of Baylor College of Medicine, Houston, Texas: Tetsuo
the Huntington Study Group were involved in the design Ashizawa, M.D., Joseph Jankovic, M .D.
and implementation of the UHDRS and authorship of this Indiana University School of Medicine, Indianapolis, In-
report. diana, U.S.A.: Eric Siemers, M.D., Kim Quaid, Ph.D.
University of Alberta, Edmonton, Alberta, Canada:
UHDRS Organizing Committee Wayne Martin, M.D.
University of Miami, Miami, Florida, U.S.A.: Juan
Karl Kieburtz, M.D., University of Rochester Medical Sanchez-Ramos, M.D., Ph.D., Alicia Facca, M.D.,
Center; John B. Penney, Jr., M.D., Massachusetts Gen- Gustavo Rey, Ph.D.

Movement Disorders, Vol. 1I , N o . 2 , 1996

140 HUNTINGTON STUDY GROUP

University of Calgary/Foothills Hospital, Calgary, Al- RETROPULSION PULL TEST

berta, Canada: Oksana Suchowersky, M.D., Gina Rohs, 0 = normal
R.N., Mary Lou Klinek, R.N. 1 = recovers spontaneously
Johns Hopkins University, Baltimore, Maryland, 2 = would fall if not caught
U.S.A.: Christopher Ross, M.D., Frederick W. Bylsma, 3 = tends to fall spontaneously
Ph.D., Neal Ranen, MD, Meeia Sherr, BS, RN 4 = cannot stand
University of British Columbia, Vancouver, British Co- FINGER TAPS (right and left)
lumbia, Canada: Michael Hayden, M.D., Lynn Raymond, 0 = normal) (21515 sec.)
M.D., Ph.D., Campbell Clark, Ph.D., Berry Kremer, 1 = mild slowing and or reduction in
M.D., Ph.D. amplitude (1 1-14/5 sec.)
2 = Moderately impaired. Definite and early
fatiguing. May have occasional arrests in
APPENDIX 2 movement (7-10/5 sec.).
HUNTINGTON STUDY GROUP 3 = Severely impaired. Frequent hesitation in
UNIFIED HUNTINGTON’S DISEASE initiating movements or arrests in ongoing
RATING SCALE movements ( 3 4 5 sec.)
4 = Can barely perform the task (0-2/5 sec.)
MOTOR ASSESSMENT PRONATE/SUPINATE-HANDS (right and left)
OCULAR PURSUIT (horizontal and vertical) 0 = normal
0 = complete (normal) 1 = mild slowing and/or irregular
1 = jerky movement 2 = moderate slowing and irregular
2 = interrupted pursuits/full range 3 = severe slowing and irregular
3 = incomplete range 4 = cannot perform
4 = cannot pursue LURIA (fist-hand-palm test)
SACCADE INITIATION (horizontal and vertical) 0 = 3 4 in 10 seconds, no cue
0 = normal 1 = <4 in 10 seconds, no cue
1 = increased latency only 2 = 2 4 in 10 seconds, with cues
2 = suppressable blinks or head movements to 3 = <4 in 10 seconds with cues
initiate 4 = cannot perform
3 = unsuppressable head movements RIGIDITY -ARMS (right and left)
4 = cannot initiate saccades 0 = absent
SACCADE VELOCITY (horizontal and vertical) 1 = slight or present only with activation
0 = normal 2 = mild to moderate
1 = mild slowing 3 = severe, full range of motion
2 = moderate slowing 4 = severe with limited range
3 = severely slow, full range BRADY KINESIA-BODY
4 = incomplete range 0 = normal
DY SARTHRIA 1 = minimally slow (? normal)
0 = normal 2 = mildly but clearly slow
1 = unclear, no need to repeat 3 = moderately slow, some hesitation
2 = must repeat to be understood 4 = markedly slow, long delays in initiation
3 = mostly incomprehensible GAIT
4 = mute 0 = normal gait, narrow base
TONGUE PROTRUSION I = wide base and/or slow
0 = can hold tongue fully protruded for 10 seconds 2 = wide base and walks with difficulty
1 = cannot keep fully protruded for 10 seconds 3 = walks only with assistance
2 = cannot keep fully protruded for 5 seconds 4 = cannot attempt
3 = cannot fully protrude tongue TANDEM WALKING
4 = cannot protrude tongue beyond lips 0 = normal for 10 steps
MAXIMAL DYSTONIA (trunk and extremities) 1 = 1 to 3 deviations from straight line
0 = absent 2 = >3 deviations
1 = slighthntermittent 3 = cannot complete
2 = mild/common or moderatehntermittent 4 = cannot attempt
3 = moderaelcommon COGNITIVE ASSESSMENT
4 = marked/prolonged
MAXIMAL CHOREA (face, mouth, trunk and VERBAL FLUENCY TEST (raw score)
extremities) SYMBOL DIGIT MODALITIES TEST (raw score)
0 = absent
1 = slighthntermittent STROOP INTERFERENCE TEST
2 = mild/common or moderatehntermittent Color Naming (number correct)
3 = moderate/common Word Reading (number correct)
4 = marked/prolonged Interference (number correct)

Movement Disurders, Vol. 11, N o . 2,1996

 UNIFIED HUNTINGTON’S DISEASE RATING SCALE 141

BEHAVIORAL ASSESSMENT
Could subject do hislher own housework without help?
Use the following keys to rate both severity and
frequency Could subject do hislher own laundry (washldry)
Severity Frequency without help?
0 = absent 0 = almost never
1 = slight, questionable 1 = seldom Could subject prepare hislher own meals without help?
2 = mild 2 = sometimes
3 = moderate 3 = frequently Could subject use the telephone without help?
4 = severe 4 = almost always
Could subject take hislher own medications without
SadIMood: feeling sad, sad voicelexpression, help?
tearfulness, inability to enjoy anything.
Low Self-Esteem/Guilt: self blame, self deprecation Could subject feed himself/herself without help?
including feelings of being a bad or unworthy
person, feelings of failure. Could subject dress himselflherself without help?
Anxiety: worries, anticipation of the worst, fearful
anticipation. Could subject bathe himselflherself without help?
Suicidal Thoughts: feels life not worth living, has
suicidal thoughts, active suicidal intent, preparation Could subject use public transportation to get places
for the act. without help?
Disruptive or Aggressive Behavior: threatening
behavior, physical violence, verbal outbursts, Could subject walk to places in hisiher neighborhood
threatening, foul, or abusive language. without help?
Irritable Behavior: impatient, demanding, inflexible,
driven and impulsive, uncooperative. Could subject walk without falling?
Obsessions: recurrent and persistent ideas, thoughts or
images Could subject walk without help?
Compulsions: repetitive, purposeful, and intentional
behaviors. Could subject comb hair without help?
Delusions: Fixed false beliefs, not culturally shared
Hallucinations: a perception without physical stimulus: Could subject transfer between chairs without help?
Auditory, Visual. Tactile, Gustatory and Olfactory
Does the investigator believe the subject is confused? Could subject get in and out of bed without help?
Yes or N o
Does the investigator believe the subject is demented? Could subject use toiletlcommode without help?
Yes or No
Does the investigator believe the subject is depressed? Could subject’s care still be provided at home?
Yes or No INDEPENDENCE SCALE
Does the subject require pharmacotherapy for
depression? Yes or No Please indicate the most accurage current level of
FUNCTIONAL ASSESSMENT Yes or No subject’s independence (only -0 or -5 selections are
acceptable)
Could subject engage in gainful employment in hisiher 100: No special care needed
accustomed work? 090: No physical care needed if difficult tasks are
Could subject engage in any kind of gainful avoided
employment? 080: Pre-disease level of employment changes or ends;
cannot perform household chores to pre-disease
Could subject engage in any kind of volunteer or non level, may need help with finances
gainful work? 070: Self-care maintained for bathing, limited house-
hold duties (cooking and use of knives), driving
Could subject manage hislher finances (monthly) terminates; unable to manage finances
without any help? 060: Needs minor assistance in dressing, toileting,
bathing; food must be cut for patient
Could subject shop for groceries without help? 050: 24-hour supervision appropriate; assistance
required for bathing; eating, toileting
Could subject handle money as a purchaser in a simple 040: Chronic care facility needed; limited self feeding,
cash (store) transaction? liquified diet
Could subject supervise children without help? 030: Patient provides minimal assistance in own
feeding, bathing, toileting
Could subject operate an automobile safely and 020: No speech, must be fed
independently? 010: Tube fed, total bed care

Movement Disorders, Vol. 11, N o . 2 , 1996

142 HUNTINGTON STUDY GROUP

FUNCTIONAL CAPACITY REFERENCES

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0 = full time skilled nursing is not related to age at onset. J Neurol Neurosurg Psychiatry
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Movement Disorders, Vol. 11, No. 2, 1996