Accuracy of Self-Reported Disability
in Patients With Parkinsonism
Richard G. Brown, MPhil; Brigid MacCarthy, MSc; Marjan Jahanshahi, MPhil; C. David Marsden, DSc
\s=b\ For the patient, the most important
aspect of parkinsonism is the degree to
which the disease interferes with daily liv-
ing. The patient's self-report may be the
only way in which such information can be
obtained. Depression and cognitive im-
pairment, however, may influence that
self-report. In the present study, three
ratings of disability, from the patient, a
relative, and an independent observer,
showed high levels of agreement. The pa-
tients' cognitive function made a small but
significant contribution to the accuracy of
their self-report judged against the rela-
tive's rating. Depression, however, played
no role. Agreement between patients and
relatives for individual items on the dis-
ability questionnaire was reasonably high.
The results suggest that patients with par-
kinsonism can provide accurate self-re-
port of their level of disability, even in the
presence of depression and cognitive im-
pairment.
(Arch Neurol. 1989;46:955-959)
rPhe clinical picture of parkinsonism
is dominated by akinesia, tremor,
rigidity, and postural abnormality. Be¬
cause of this, clinical assessment of
patients with parkinsonism is heavily
weighted to obtaining indexes of these
Accepted for publication February 6,1989.
From the University Department of Neurology
and Parkinson's Disease Society Research Centre
(Mr Brown) and the Medical Research Council
Social Psychiatry Research Unit (Ms MacCarthy),
Institute of Psychiatry; and the Department of
Clinical Neurology, Institute of Neurology (Ms
Jahanshahi and Dr Marsden), London, England.
Reprint requests to MRC Human Movement
and Balance Unit, National Hospital, Queen
Square, London WC1N 3BG, England (Mr Brown).
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motor symptoms. For the patient,
however, the significance of the symp¬
toms does not lie in the amplitude of
the tremor or the speed of foot tapping.
Rather, it is the degree to which the
motor symptoms and other aspects of
the disease interfere with his or her
ability to lead a normal life. Conse¬
quently, the goal of clinical manage¬
ment, or the development of new treat¬
ments, should be aimed at decreasing
the level of disability.
The main methods of assessment of
disability are observation in natural or
seminatural settings, interview, and
questionnaire. In many instances, both
clinical and research, questionnaires
provide the only practical or cost-
effective method of gathering informa¬
tion. Kivela1 addressed the question of
the validity of such self-report. He as¬
sessed 218 patients with a variety of
medical disorders. Subjects completed
a questionnaire covering aspects of
self-care and domestic activities. They
were also assessed by a health-care
professional on a set of six activities.
Employing a four-point scale, agree¬
ment between the patients and the
professional of 97% was obtained for
dressing and 84% for bathing. For
more general types of activity such as
cooking and cleaning, agreement was
lower (77% and 64% ) even when using
a dichotomous scale. The suggestion is,
however, that for specific activities
self-report can provide a valid index of
disability.
Can this finding be generalized to
patients with Parkinson's disease?
Caution is necessary for two reasons.
First, the level of disability reported
by patients is significantly associated
with their level of depression,2·4 al¬
though there have been exceptions.5·6
While it may be that the depression is
a reaction to the disability, it is also
possible that depression may bias the
patient's self-report, so that the more
depressed patients perceive them¬
selves as being more disabled than
they really are. Depression, therefore,
may introduce a systematic bias into
self-report. In addition, depression it¬
self may make an independent contri¬
bution to the patient's overall level of
functional disability. Second, marked
cognitive impairment is found in some
cases. While estimates vary,7 recent
studies suggest that clinically signifi¬
cant impairment may be found in ap¬
proximately 10% of patients with Par¬
kinson's disease.811 Taking the whole
parkinsonian population, however, the
figure may be higher. The relevance of
dementia to the present issue is that
cognitive impairment in a patient may
interfere with the reliability of his or
her self-report. It is unclear whether
there would be a systematic bias, or
simply increased variability in the ac¬
curacy of the ratings.
The aim of the present study was to
assess the accuracy of self-reported
disability in a group of patients with
parkinsonism by comparing their rat¬
ings with those of a care giver and of
an independent observer. Further¬
more, the study aimed to explore the
possible influence of depression and
cognitive impairment on self-report.
PATIENTS AND METHODS
Sample
Sixty-six patients took part in this study,
drawn from two sources. The patients com-
 posing group 1 were assessed as part of a
study of psychosocial function in patients Table 1.—Activities of Daily Living Scale: Item Analysis of Agreement/Disagreement
with parkinsonism and their care givers. Between Patient and Relative Ratings (N =
66)
Forty patients were selected from a sample %Complete % Agreement
of 132 described previously.4 Selection was
based on two criteria: first, that the patient
Item Agreement (Weighted)
Gross mobility
lived with another person, usually a spouse,
who could act as an informant, and second, Getting out of bed_70_92_.67
that the patient lived within a 50-mile Getting out of chair 64 91 .65
radius. All 40 patients were visited in their Walking around home 68 89 .55
own homes, where they were assessed. Walking outside, eg, to shops 64 90 .74
Three of the patients and/or their care giv¬ Traveling by public transport 57 85 .66
ers failed to complete the disability ques¬ Walking up stairs 70 91 .59
tionnaires (see below). These patients will Walking downstairs 62 88 .49
not be considered further in the present re¬ Getting into bath 54 86 .59
port. In addition, one caregiver failed to Getting out of bath_58_88_.62
complete the Beck Depression Inventory Getting undressed 56 86 .50
(BDI). Results on care givers BDI are, Picking up object from floor 41 80 .28
therefore, based on 64. Fine coordination
The remaining group of 37 patients com¬
Brushing teeth 62 62 .53
prised 23 men and 14 women, with a mean
( ± SD) age of 65.1 ± 9.6 years. Mean ap¬ Washing_68_9i_.57
proximate duration of illness was 10.9 ± 5.4 Opening tins 58 84 .60

years, with a range from 3 to 26 years. Pouring milk from bottle 66 90 .63
Twelve of the patients were in Hoehn and Making cup of tea 71 92 .73
Yahr12 stage II, 20 in stage III, 3 in stage IV, Holding cup and saucer 57 87 .54
and 2 in stage V. All were taking antipar- Washing and drying dishes 59 87 .55
kinsonian medication at the time of assess¬ Using knife and fork 47 84 .51
ment. Inserting electrical plug 71 92 .73
The second group of patients were par¬ Dialing telephone 57 87 .54
ticipants in a study of sexual function in Holding and reading newspaper 59 87 .55
patients with parkinsonism and their Writing letter 47 84 .51
spouses carried out by us. Twenty-nine pa¬
tients and their spouses completed disabil¬ Getting dressed 56 86 .51
Means
ity questionnaires. The patient group com¬ Total scale 60 87 .58
prised 20 men and 9 women, with a mean Gross movements 60 88 .58
age of 50.4 ± 9.3 years. Mean approximate
duration of illness was 10.5 ± 4.3 years, Fine movements 59 86 .58
with a range from 3 to 19 years. Hoehn and
Yahr ratings were not available for these
patients. All were taking antiparkinsonian pour liquid from one container to another, was not significant (i 0.79, df= 64,
=

medication. and hold a cup and saucer. Each item was .43). The mean of the total sample
=

Assessment Measures
All patients completed an Activities of
Daily Living (ADL) questionnaire. This
questionnaire was the same as that em¬
ployed in two earlier studies.34 It contains
24 items covering a range of activities
(Table 1). A five-point scale was used for
each item ranging from "able to perform
task alone and without difficulty" to
"unable to perform task." A high score in¬
dicated greater disability. A total score was
computed (range, 24 to 120), together with
rated in the same way as the ADL ques¬
tionnaire. Subjects from group 1 were also
assessed for the severity of their tremor,
rigidity, akinesia, and postural abnormal¬
ity, employing the King's College Hospital
(KCH) Parkinson's disease rating scale.13
Depression was assessed in patients and
their relatives using the BDI.14 One patient
in group 2 failed to complete the BDI. In
addition, the patients in group 1 were ad¬
ministered the Folstein et al15 Mini-Mental
State Examination (MMS).
was 48.5 ± 21.8. This was comparable
with the score obtained by the larger
sample in the earlier study (48.5
± 18.7).4 The mean ADL score re¬
ported by the relatives was slightly
higher than that reported by the pa¬
tients themselves, both for relatives in
group 1 (49.6 ± 20.5) and relatives in
group 2 (52.5 ± 22.5). The relatives'
ratings for the two groups did not
differ significantly (t 0.56, df= 64,
=

two subscores. These were derived by split¬ .58). The mean for the total sample
=

ting the scale into two factors correspond¬ RESULTS was 50.9 ± 21.3. Comparing the pa¬
ing roughly to "gross mobility" and "fine tients' and relatives' ratings for the
coordination." The subscales were derived Patients in group 1 were signifi¬ combined sample revealed that the
from a principal components analysis re¬
ported previously.4 Each patient was asked cantly older than those in group 2 relatives' tendency to rate disability
to fill out the questionnaire according to (t 6.2, df= 64, < .001). They also
=
higher than the patients approached
how well he or she would be able to perform had a later approximate age at onset of significance (t =
1.81, d/=65, =
.08).
each activity "in general" and without the their parkinsonism (t 5.3, df= 64,= The BDI score of the patients
mean
use of any special aids. Each relative was < .001). The mean duration of illness in group 1 was 13.2 ± 8.8, and 15.4 ± 7.9
also asked to give his or her independent in the two groups, however, did not for those in group 2. The difference be¬
judgment of the patient's level of ability for differ (t =0.37, df= 64, .71). The
=
tween the groups not significant
was
each task on the ADL questionnaire. mean age of the total sample was 58.6 (i =
1.06, df= 63, .28). The mean
=

In addition to the questionnaire mea¬
sures, patients in group 1 were asked to
perform a range of activities to be rated by
an observer (R.G.B.). These were as follows:
get up from a chair, walk and turn, walk up
and down stairs, fasten buttons, hold and
turn the pages of a large newspaper, bend
down and insert an electric plug in a socket,
± 11.9 years, and the mean approxi¬
mate age at onset of the disease was
48.9 ± 12.8 years. Mean duration of
illness was 10.7 ± 4.9 years.
The mean score for the patient-rated
ADL was 46.6 ± 21.5 for group 1 and
50.9 ± 22.3 for group 2. This difference
BDI score for the combined sample
(14.2 ± 8.4) was similar to that re¬
ported previously4 (13.9 ± 7.3). Eigh¬
teen patients (27% ) had a BDI score of
18 or more. The mean for the relatives
in group 1 was 11.4 ± 9.7, and 10.1
± 7.5 for those in group 2. The differ-

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 Table 2.—Pearson Correlations Between Indexes of Disability,
Relative's Observer's
ADL
Patient's ADL
Relative's ADL
Observer's ADL
Symptom severity
Patient's BDI
Relative's BDI
*
ADL indicates Activities of Daily Living questionnaire score; BDI, Beck Depression Inventory score; and MMS,
Mini-Mental State score. All correlations are significant (P < .05) except for those marked NS (not significant).
64 to 65. except for correlations Involving observer's ADL, symptom severity, and MMS,
For all correlations, ~
where =
37.
enee between the groups was not sig¬
nificant (i 0.60, df= 63,
=
.55). The
=
mean for the combined sample was
10.9 ± 8.8. This figure is considerably
higher than that obtained by Gotham
et al3 for a sample of normal elderly
(6.4 ± 5.8). Ten relatives (17.2% ) had a
BDI score of 18 or more.
The mean MMS score for the pa¬
tients in group 1 was 31.7 ± 3.2. Eight
patients achieved a score of less than
30 of a maximum of 35, with three of
these scoring less than 25.
As a first step to assessing the agree¬
ment between the patient's and the
relative's ADL ratings, standardized
difference scores were obtained and
the distribution examined. Thirty-
eight cases (58% ) were within ± 0.5 SD
of complete agreement. One case, how¬
ever, was revealed as an outlier, the
patient rating his level of disability as
far greater than the relative (z 4.1).
This case was eliminated from the
subsequent analyses.
Table 2 gives the zero-order Pearson
correlation coefficients for the various
measures of disability, symptom se¬
verity, depression, and cognitive func¬
tion. Correlations involving MMS
score, symptom severity, and observ¬
er-rated disability are based on sub¬
jects from group 1. In terms of the pa¬
tient's self-reported disability, the
most meaningful direct association is
between the patient-rated and rela¬
tive-rated ADL. The correlation of .91
for the total score suggests a high de¬
gree of overall agreement between the
two sets of ratings. The figures were
equally high for the subscale scores for
"gross" (r .90) and "fine" movements
= ited to the patient's self-report. The
(r .87). The association between the
= MMS scores were also significantly re¬
observer rating and patient rating for
group 1 was .84. In contrast to these
high correlations between patient self-
report and independent measures of
disability, the patient's rating of dis¬
ability was less strongly associated
with the parkinsonian symptom sever¬
ity score (KCH scale; r .59). The im¬
=
plication is that a measure based on
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Depression,
Cognitive Function*
Symptom Patient's Relative's
ADL Severity BDI BDI
.59 .34 .37
.82 .60 .39 .44
.29 .25 (NS)
.01 (NS) .17 (NS)
.33
the symptoms of tremor, rigidity, aki-
nesia, and postural abnormality is not
necessarily a good indicator of disabil¬
ity, at least as rated by the patient. In
contrast, the observer-rated disability
and KCH symptom severity scores
were strongly correlated (r .84). This =
may be partly due to the fact that both
ratings were made by the same indi¬
vidual. A more important reason may
be that both ratings were made on the
patient at the same point in time,
whereas the patient's and relative's
ADL ratings were based on more gen¬
eral levels of disability. In particular,
general ratings made by patients who
experience a wide variation in disabil¬
ity throughout the day may not reflect
their performance either at their best
or at their worst. In these cases, two
separate self-ratings may provide the
most useful information.
= As found in previous studies,3·4 the
patient's level of depression as mea¬
sured by the BDI was significantly
correlated with the overall level of
self-rated disability (r .34). The BDI=
scores of the patients were also associ¬
ated with the relative-rated ADL
(r .37). The correlation with observ¬
=
er-rated disability was lower, al¬
though still significant (r .29). In
contrast, the patient's BDI score was
unrelated to the KCH symptom sever¬
ity score (r =
—.01).
Scores on the MMS were signifi¬
cantly associated with the patient's
level of self-rated disability (r -.48),
with high levels of disability associ¬
ated with lower levels of cognitive
function. The association was not lim¬
lated to the relative-rated ADL
(r —.34) and the observer ratings of
= added significantly to the regression
disability (r =-.50), as well as the rat¬
ings of symptom severity (r —.35).
To explore the contributions of the
patients' BDI and MMS scores to their
self-report of disability, a multiple re¬
gression analysis was performed, us¬
ing the data from group 1, in which the
and
patient-rated ADL score was taken as
the dependent variable. Independent
variables considered were the relative-
rated ADL, patient's BDI and MMS
MMS scores, and relative's BDI scores. This
latter variable was included to assess
-.34 whether a depressed relative was bi¬
-.50 ased in his or her report of the pa¬
-.35 tient's disability, in the same way as
-.27 (NS) the patients themselves might be.
(NS)
.20 First, the independent variables
were entered in one step into the re¬
gression equation. This gave a multiple
R of .89 (adjusted R2 .77, F 27.78,
= =
P<.0001). Together, therefore, this
set of variables gives a very good pre¬
diction of patient-rated ADL. The next
stage was to perform a stepwise anal¬
ysis in which the independent vari¬
ables were entered one at a time in the
order determined by their association
with the dependent variable. The first
variable to enter the equation was the
relative-rated ADL. This gave a mul¬
tiple R of .87 (adjusted R2 .74, =
F 96.8, < .0001). The relative rat¬
=
ing, therefore, gave almost as good a
prediction of the patient's disability as
the whole set of independent variables
together. Examining the partial cor¬
relation of the remaining variables
with patient-rated ADL, after ac¬
counting for the relative's rating, re¬
vealed a significant assocation of —.49
for MMS score (P < .01). In contrast,
neither the patient's BDI (partial
r =
.05, .78) nor the relative's BDI
=
(partial r .03,
=
.89) was signifi¬
=
cantly associated with the patient-
rated ADL. These findings were re¬
flected in the next stage of the regres¬
sion analysis in which the MMS was
entered, making a significant contri¬
bution to the regression equation
(multiple R .89, adjusted R2 .78, R2
= =
change .05, F change 8.07, <
= =
.01). Neither BDI score made any sig¬
= nificant contribution to the regression
equation.
To summarize, the relative's rating
of disability was the best single pre¬
dictor of the patient's own rating, ac¬
counting for 83% of the variance in the
= total sample and 74% in group 1. In
addition, however, the patient's level
of cognitive function as measured by
the MMS explained an additional 4%
of the variance. In contrast, neither
the relative's nor the patient's levels of
depression, as measured by the BDI,
equation. To explore the contribution
= of cognitive function, the MMS scores
were correlated with the difference
between the patients' and relatives'
ADL ratings. The direction of the as¬
sociation (r .35,=
< .05) suggested
that the more cognitively impaired the
 patient was, the more he or she tended
to underestimate his or her level of
disability compared with his or her
relative, or alternatively, the more the
relative tended to overestimate the
patient's level of disability.
So far, the analysis has been con¬
cerned with global indexes of disabil¬
ity. The next question to be addressed
was the "accuracy" of the patient's
self-report (as judged against the rel¬
ative's assessment) for individual
items on the ADL scale. The statistic of
choice in such an instance is the
weighted .16 This is based on the
agreement between the two raters be¬
yond that which would be expected by
chance. In addition, it allows credit for
partial rater agreement. With a five-
point continuous ordinal rating scale
as used with the ADL questionnaire,
linear weights were used as recom¬
mended by Cicchetti." Complete
agreement was given a weighting of 1,
ratings one scale point apart a rating
of 0.75, those two scale points apart a
weighting of 0.5, three scale points a
weighting of 0.25, and complete dis¬
agreement (four scale point differ¬
ence) a weighting of 0. Chance agree¬
ment was also calculated using the
same weighting procedure. Table 1
gives various statistics. First, there is
the percentage of cases in which there
was complete agreement between the
patient's and relative's ratings for
each given item. Next, there is the
percentage agreement based on the
weighting procedure described above.
Finally, there is the statistic for each
item.
Complete agreement varied from
41% (picking up an object from the
floor) to 71% (making a cup of tea, and
inserting and removing an electrical
plug). The average was 60% for the
whole scale. There was no difference
between agreement for "gross" actions
(60%) and "fine" movements (59%).
The percentages after weighting for
partial agreement were, of course,
higher. The pattern, however, was es¬
sentially the same as that for absolute
agreement. The dramatic increase in
percentage agreement after weighting
suggests that the majority of disagree¬
ments were by one or at most two scale
points. Examining the data revealed
that the majority of such disagree¬
ments occurred between ratings of 1
("can perform alone without diffi¬
culty") and 2 ("can perform alone with
a little effort"). It was, presumably,
difficult for the relative to distinguish
between these two ratings. It may be,
therefore, that the relative's ratings
were less accurate than those of the
patient in these instances. For the
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more marked categories of impair¬
ment where the patient's difficulty was
obvious or assistance was required, the
relative's rating was more likely to be
in accordance with the patient's.
The lowest value of was .28 (picking
up an object from the floor). This item
was exceptional, however, and all
other values were .49 or greater.
There are no rigid rules for interpret¬
ing values. Landis and Koch18 suggest
that values in the range .4 to .6 are
"moderate," .6 to .8 "substantial,"and
.8 to 1.0 "almost perfect." With the ex¬
ception of the single low value, all of
the values were in the range from
moderate to substantial.
Finally, the analysis conducted
gave an indication of "bias" for each
item. This indicated whether there
was a tendency for one set of raters
(patients or relatives) to give consis¬
tently higher ratings than the other
set. For the large majority of items,
the relatives tended to rate higher
than the patients. For only three
items, however, was the bias signifi¬
cant: traveling by public transport
(2 6.0, df= 1, < .05), getting un¬
=
dressed ( 2 6.8, df= 1,P< .01), and
= sures of that disability.
opening tins ( 2 10.3, df=l,P< .01).
= The distinction between disability
COMMENT
The main finding of the present
study was that patients with Parkin¬
son's disease can provide accurate
judgments of their disability. The
analyses showed this to be true for a
total disability score, for subscales,
and for individual items. In the latter
instance, however, it was clear that
there may be a small margin of dis¬
agreement between the ratings of the
patient and the relative, particularly
for instances of mild impairment. In
such instances, the patient's rating
should be taken to be more accurate.
In the introduction, depression and
cognitive impairment were proposed
as factors that might influence this ac¬
curacy. The pattern of correlations re¬
vealed that both variables were signif¬
icantly associated with the patient's
self-reported level of disability. How¬
ever, only cognitive function made any
independent contribution to the pre¬
diction of the patient's self-report once
the relative's rating of disability was
taken into account. Even then, the
contribution was small. The implica¬
tion is that the best single index of
disability is the patient's own judg¬
ment of it. In the presence of cognitive
impairment, it is possible that the pa¬
tient's judgment may be a slight un¬
derestimate. Depression, however,
seems to have little impact on the ac¬
curacy of the self-report and certainly
introduces no systematic bias.
A distinction was drawn, in the in¬
troduction, between disability and
symptom severity. The results from
the present study revealed that the two
factors were only moderately corre¬
lated. More surprising was the dra¬
matic difference in the relationship
between the two factors and the pa¬
tient's level of depression as measured
by the BDI. While depression was sig¬
nificantly associated with disability,
whoever rated the disability, there was
no association with symptom severity.
If depression is taken as one index of
the impact of the disease on the suf¬
ferer, then it is clear that the severity
of the motor symptoms alone is of lit¬
tle importance. Rather, it is the impact
that these symptoms, and other fac¬
tors, have on the patient's ability to
lead a normal life that contributes
most to his or her mood. This rein¬
forces the point made in the introduc¬
tion, that treatment should be focused
on lessening the disability, not the
motor symptoms. The results from the
present study suggest that patients'
self-ratings can provide accurate mea¬
and symptom severity may also be im¬
portant methodologically in obtaining
self-report data. In a recent study,
Golbe and Pae19 assessed the validity
of physical self-assessment in Parkin¬
son's disease. Patients were asked to
ratethemselves, on a four-point scale,
for speed of finger tapping, gait,
tremor, and chorea. These same phys¬
ical features were rated independently
by a neurologist. Agreement between
the two sets of ratings, however, was
low, with patients tending to rate
higher. The values were low and
ranged from .12 (finger-tapping) to .35
(tremor). The authors concluded that
quantitative self-assessment of the
physical signs of the disease has poor
validity in Parkinson's disease, at least
with the measures they employed. An
important difference exists, however,
between their study and the present
one. The Golbe and Pae19 patients were
asked to rate clinical features of the
disease, while in the present study the
behaviors being rated were everyday
activities. It is plausible to assume
that the latter are more meaningful to
the patient and, therefore, easier to
rate. As an illustration, the patient is
likely to be able to give a good indica¬
tion of how well he or she can walk
without necessarily being able to rate
the severity of gait disturbance. Simi¬
larly, a self-rating of the ease with
which the patient can drink from a cup
and saucer is likely to be more valid
 than a self-rating of tremor.
Finally, it should be noted that the
ADL scale employed in this and previ¬
ous studies was not intended to provide
a complete clinical assessment of the
1. Kivela SL. Measuring disability: do self-rat-
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2. Lieberman A, Dziatolowski M, Coopersmith
M, et al. Depression, intellectual impairment and
Parkinson's disease. Neurology. 1981;31:645-650.
3. Gotham AM, Brown RG, Marsden CD. De-
pression in Parkinson's disease: a quantitative
and qualitative analysis. J Neurol Neurosurg
Psychiatry. 1986;49:381-389.
4. Brown RG, MacCarthy B, Gotham AM, Der
GJ, Marsden CD. Depression and disability in
Parkinson's disease: a follow-up of 132 cases.
Psychol Med. 1988;18:49-55.
5. Robins AH. Depression in patients with
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patient's level of disability. Several
areas of functioning were omitted.
Rather, the scale was intended to pro¬
vide a brief, global rating of disability
for research purposes. It is hoped,
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