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Journal of the Neurological Sciences 335 (2013) 204–209

Contents lists available at ScienceDirect

Journal of the Neurological Sciences


journal homepage: www.elsevier.com/locate/jns

Development of a short form of Stroke-Specific Quality of Life Scale


for patients after aneurysmal subarachnoid hemorrhage
George Kwok Chu Wong a,⁎, Sandy Wai Lam a, Karine Ngai a, Adrian Wong b, Wai Sang Poon a, Vincent Mok b
a
Division of Neurosurgery, Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong
b
Division of Neurology, Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong

a r t i c l e i n f o a b s t r a c t

Article history: Background: The identification of aneurysmal subarachnoid hemorrhage (aSAH) patients with a decrease in
Received 12 August 2013 health-related quality of life (HRQOL) is challenging. Stroke-Specific Quality of Life (SS-QOL) Scale is one of the
Received in revised form 11 September 2013 commonest disease-specific quality of life measures initially developed and validated for ischemic stroke pa-
Accepted 25 September 2013 tients. A disadvantage is subject burden and a short form is more practical to use in clinical and research setting.
Available online 2 October 2013
Aim: This study aimed to develop a short form (12-item) of a Chinese version of Stroke-Specific Quality of
Life Scale for aSAH (SSQOL-a) for clinical and research applications.
Keywords:
Cognition
Methods: We carried out a prospective observational assessor-blinded multi-center study in Hong Kong.
Depression The study was registered at ClinicalTrials.gov of the U.S. National Institutes of Health (NCT01038193),
Quality of life and was approved by hospital ethics committees.
Stroke Results: One hundred and eighty-six aSAH patients were recruited over a 30 month period during admis-
Subarachnoid hemorrhage sion. One hundred (54%) aSAH patients completed the 12-month assessment battery and were included
Validation study into the current study. The total score, physical component score, and psychosocial score of the 12-item
Chinese version showed satisfactory internal consistency and explained high percentages of variance of
the full Chinese version (92% to 96%). The 12-item Chinese version showed significant correlations with
neurological, functional, generic quality of life, psychiatric, and cognitive outcome measures at 12 months.
Chinese version calculated physical subscore had better discrimination in detecting complete recovery
than the Dutch version calculated physical subscore in our Chinese population.
Conclusions: The 12-item Chinese version of SSQOL-a has a satisfactory internal consistency and criterion
validity for SAH patients at 12 month assessments.
© 2013 Elsevier B.V. All rights reserved.

1. Introduction for ischemic stroke patients in 1999 [10], and subsequently in a mixed
ischemic and hemorrhagic stroke patients in 2007 [11]. For SAH, our
Subarachnoid hemorrhage (SAH) from a ruptured intracranial group had validated the Chinese version of Stroke-Specific Quality of
aneurysm accounts for approximately 5% of all strokes, occurs at a Life Scale for aneurysmal subarachnoid hemorrhage (SSQOL-a) in a
relatively young age, and carries a worse prognosis for survival, local population [12]. As compared to European versions, our analysis
despite improvement in medical care with time [1–3]. Moreover, suggested a different dichotomization of physical (upper extremity, vi-
quality of life is often decreased in SAH survivors, as confirmed in sion, work productivity, energy, family roles, mobility, self-care) and psy-
reported case series [4,5] and is another important measure of out- chosocial (personality, thinking, mood, language, social role) component
come in SAH patients [6–8]. Health-related quality of life measurements scores, which might reflect cultural differences [3,12].
are commonly used to quantify burden of disease, to evaluate treatment A disadvantage of the full version is subject burden and a short form is
method, and to facilitate benchmarking. For outcome research, a combi- more practical to use in clinical and research settings as quality of life
nation of generic (allows comparisons across different disease popula- measure is usually only one part of a larger assessment battery [13].
tions) and disease-specific (sensitive to disease-specific problems) Hence, development of a short form for a Chinese version is urgently
measures is recommended [9]. required.
Stroke-Specific Quality of Life (SS-QOL) Scale is one of the commonest
disease-specific quality of life measures initially developed and validated
2. Aims
⁎ Corresponding author at: Department of Surgery, 4/F Clinical Science Building, Prince
of Wales Hospital, 30-32 Ngan Shing Street, Shatin, New Territories, Hong Kong.
Tel.: + 852 2632 2624; fax: + 852 2637 7974. We therefore aimed to develop a 12-item Chinese version of Stroke-
E-mail address: georgewong@surgery.cuhk.edu.hk (G.K.C. Wong). Specific Quality of Life Scale for aneurysmal subarachnoid hemorrhage.

0022-510X/$ – see front matter © 2013 Elsevier B.V. All rights reserved.
http://dx.doi.org/10.1016/j.jns.2013.09.033
G.K.C. Wong et al. / Journal of the Neurological Sciences 335 (2013) 204–209 205

3. Methods medications, and ability to handle finances. The Chinese version


was validated and used previously [25].
This was a prospective observational assessor-blinded study carried
out in Hong Kong and was an extension of the previously reported co- 3.6. Geriatric Depression Scale (GDS) [26]
hort [12]. The current report analyzes data from the study which is reg-
istered at ClinicalTrials.gov of the U.S. National Institutes of Health Post-stroke depressive symptoms were assessed using the validated
(NCT01038193), and was approved by hospital ethics committees. The Chinese version of the 15-item version of the GDS [27]. Normal mood
study conforms to the Declaration of Helsinki, and written informed was defined as 0 to 10; mild depression was defined as 11–20; and
consent was obtained from all participants or their next of kin. moderate-to-severe depression was defined as 21–30 [26].
For aSAH patients, inclusion criteria were: 1) spontaneous subarach-
noid hemorrhage with angiography-confirmed etiology of intracranial 3.7. Cognitive outcome: Montreal Cognitive Assessment (MoCA) [28]
aneurysms; 2) hospital admission within 96 h after ictus; 3) age be-
tween 21 and 75 years; 4) a speaker of Chinese (Mandarin or Canton- The MoCA is a one-page, 30-point test that is usually administered
ese); and 5) informed consent from patients or their next of kin. within 15 min and evaluates the following six subtests: visuospatial/
Patient exclusion criteria were: a) a history of previous cerebrovascular executive functions, naming, attention, abstraction, recall, and orienta-
or neurological disease other than unruptured intracranial aneurysm; tion [28]. One point is added for participants with less than 12 years of
or b) history of neurosurgery prior to ictus. Patient demographics and education. We had recently reported the application of the Hong Kong
clinical data were obtained before their discharge. version of MoCA in SAH patients [29,30].

3.1. Assessments 3.8. Development of the 12-item version of SSQOL-a

Assessments were carried out 12 months after ictus by research as- Stroke-Specific Quality of Life Scale was initially generated and
sistants (psychology graduates) trained by a post-doctoral research psy- constructed by identification of the 12 commonly affected domains in
chologist blinded to other clinical data. poststroke patients in 1999 [10]. These 12 domains were found to be
unidimensional and responsive to change [10]. Thus, for the 12-item
Chinese version of SSQOL-a one item is selected from each of the 12
3.2. Stroke-Specific Quality of Life Chinese version
domains of the full version and the items with the highest item total
correlation, thereby being most representative for the domain score
The SSQOL-a has the same structure as the English version and can
were selected. These 12 items were grouped into physical and psycho-
be obtained from the corresponding author [10,12,14]. It comprises 49
social dimensions, according to our previous study [12]. The subscores
items and results in 12 domain scores and a total score. In our previous
and total score of the 12-item Chinese version SSQOL-a were calculated
study using principal component analysis, we identified a two-
as the unweighted averages of the respective item scores and ranged
component scoring system for a Chinese version [12]. The physical
from 1 up to 5. Therefore, a score in the short Chinese version should
component score comprises seven domains (self-care, mobility,
reflect the same level of quality of life as on the full Chinese version.
upper extremity function, vision, work productivity, energy, and
Similarly, Dutch version calculated subscore and total score were also
family role). The psychosocial component score comprises five do-
calculated for comparisons [3,13].
mains (thinking, personality, mood, language, and social roles).
The dichotomization showed no significant floor or ceiling effects
3.9. Sample size
in our previous study [12].

The minimal sample size was calculated to demonstrate the agree-


3.3. Short Form-36 (SF-36)
ment between the short form and the full Chinese version if the limits
of agreements were 0 +/− 0.6 and the standard deviation of the differ-
SF-36 is a 36-item generic general health questionnaire that yields
ences is estimated to be 0.2 as in Post et al. [13]. Assuming that the limits
scores on eight health subscales relating to physical health and social
of agreement must cover 99% of the samples with 95% confidence, the
and mental well-being [15,16]. The Chinese version has previously
two-sided normal distribution tolerance interval factors k2 was 3 and
been validated, and population-based norms are available [17,18]. The
the minimal sample size was 100 [31].
HRQOL assessment was omitted if the patient was unable to follow
commands or to comprehend and answer the questions correctly. The
3.10. Statistical analysis
scores of the various scales are combined to form physical health and
mental health component scores. The procedures for scoring and the
The trial data were collected on printed forms and entered into a
computation of the scale and component scores of SF-36 have been
computer using Access 2003 software (Microsoft Corp., Redmond, WA,
described previously using norms for the Hong Kong population [19].
USA). Statistical analyses were generated using SPSS for Windows
Version 15.0 (SPSS Inc., Chicago, IL, USA). Categorical data are given
3.4. Modified Rankin Scale (mRS) [20–22] as numbers (percentages), unless otherwise specified; numerical
data are given as means and standard deviations (SD); and ordinal
The mRS is a valid and clinically relevant instrument that is used to data are given as medians and interquartile ranges. A difference
assess recovery (death, disability, and dependence) and provides an with a p value of less than 0.05 was regarded as statistically signifi-
end-point in aneurysmal subarachnoid hemorrhage trials [23]. The cant (two-tailed test). Categorical data were analyzed using the
mRS ranges from 0 (no symptom) to 6 (death). Fisher's exact test or the Chi-square test, with odds ratios and 95%
confidence intervals (CI) as appropriate. Item total domain correla-
3.5. Chinese Lawton Instrumental Activities of Daily Living (IADL) Scale [24] tions were assessed using Spearman's rank order correlation coeffi-
cients. Cronbach's alpha was used to assess internal consistency. A
The Lawton IADL Scale is an appropriate instrument to assess in- Cronbach's alpha coefficient of at least 0.70 suggested internal con-
dependent living skills. Items that are assessed include ability to sistency. Agreement between the short form and the full Chinese
use the telephone, go shopping, prepare food, do the housekeeping, version was further examined at group level by comparing the
and do the laundry, mode of transportation, responsibility for own mean difference and 95% confidence interval, and at the individual
206 G.K.C. Wong et al. / Journal of the Neurological Sciences 335 (2013) 204–209

level by computing the limits of agreement (+/− 1.96 × SD differ- 4.3. Criterion validity of the 12-item Chinese version
ence) [32]. The magnitude of the difference was expressed as effect
sizes by dividing the SD of the corresponding full Chinese version. The total score, physical component score, and psychosocial score of
The conventional interpretation of effect sizes is: 0.2 is small, 0.5 is the 12-item Chinese version showed satisfactory internal consistency
medium, and 0.8 is large [33]. Correlations with other outcome mea- (Table 3). The 12-item Chinese version scores explained high percent-
sures (mRS, IADL, GDS, MoCA, SF-36 physical health and mental ages of variance of the full Chinese version (92% to 96%) (Table 3).
health scores) were assessed using Spearman's rank order correla- The mean differences between the scores on the 12-item and full
tion coefficients. Chinese versions were very small (0.1–0.2) (Table 3). Limits of agree-
To examine any difference in differentiating excellent neurological ment analyses showed that the 12-item Chinese version was wider for
outcome (mRS 0–1), complete recovery (mRS 0), and normal mood the psychosocial component score as compared to the physical compo-
(GDS 0–10) at one year, receiver operating characteristic curves (ROC) nent score. The effect sizes of the individual differences between the 12-
were constructed to examine the Chinese 12-item version and Dutch item and the full Chinese version total scores were small for most
12-item version. The area under the curve (AUC) was calculated for patients: between 0 and 0.2 for 70% of patients, between 0.2 and 0.5
each ROC. AUC represents the probability that, when one sample is for 23% of patients, and between 0.5 and 0.8 for 4% of patients.
drawn from a truly normal population and another sample from a Total and component score responsiveness was assessed with corre-
truly abnormal population, the score of the normal sample will be lations with neurological, functional, generic quality of life, psychiatric,
higher than that of the abnormal sample. A larger AUC denotes better and cognitive outcome measures at 12 months. Both the 12-item and
correlation. AUCs were presented with 95% CI. Statistical significance full SSQOL-a Chinese version total and component scores correlated
of the differences between AUCs was assessed with the nonparametric with mRS, IADL, GDS, SF-36 physical health and mental health scores.
approach of DeLong et al. [34]. The SF-36 physical health scores correlated better with the physical
component scores of both 12-item and full SSQOL-a Chinese versions,
whereas GDS scores correlated better with the psychosocial component
4. Results scores. The 12-item version psychosocial component score correlated
better with MoCA than the physical component scores (Table 4).
4.1. Study cohort

One hundred and eighty-six aSAH patients were recruited over a 4.4. Comparisons of the Chinese 12-item and Dutch 12-item scoring
30 month period during admission. One hundred (54%) aSAH patients systems of Stroke-Specific Quality of Life Scale
completed the 12-month assessment battery and were included into
the current study (Table 1). In the comparison of included patients The data are shown in Table 5. For complete recovery (mRS 0), AUC
with non-included patients, included patients were more likely to for the Chinese 12-item version calculated physical subscore was signif-
have coiling and achieved better mRS at 12 months. icantly higher than the Dutch 12-item version calculated physical
subscore (0.82 vs 0.74, p = 0.028). For excellent outcome (mRS 0–1),
there was also a trend towards higher AUC for the Chinese 12-item
4.2. Development of the 12-item Chinese version version calculated physical subscore as compared to the Dutch 12-
item version calculated physical subscore (0.85 vs 0.80, p = 0.091).
In all the item total domain correlations of the 12 selected items For normal mood (GDS 0–10), there was also a trend towards higher
were very high (0.82–1.00) (Table 2). The highest correlations were in AUC for the Chinese 12-item version calculated physical subscore as
self-care and work. The selected items are also listed in Table 2. compared to the Dutch 12-item version calculated physical subscore

Table 1
Characteristics of the aneurysmal subarachnoid hemorrhage patients included and not included in the study.

Patients included (n = 100) Patients not included (n = 86) p value

Sex (% male) 31 44 0.063


Age (years, mean +/− SD) 54 +/− 11 66 +/− 10 0.285
Education (years, mean +/− SD) 8 +/− 4 8 +/− 4 0.402
Location of ruptured aneurysm (%) 0.251
Anterior circulation 85 90
Posterior circulation 15 10
Aneurysm size (mm) 5.3 +/− 2.4 5.1 +/− 2.4 0.703
Aneurysm treatment 0.004⁎
Clipping (%) 45 66
Coiling (%) 55 34
Delayed cerebral infarction (%) 35 40 0.483
Hydrocephalus requiring VP shunt (%) 12 6 0.164
mRS at one year (%) 0.011⁎
0 28 6
1 18 0
2 36 59
3 10 24
4 5 6
5 3 0
6 0 6
49 item SSQOL-a scores (mean +/− SD)
Physical component 4.3 +/− 0.9
Psychosocial component 4.0 +/− 0.9
Total score 4.2 +/− 0.8

SSQOL-a: Stroke-Specific Quality of Life Scale for aneurysmal subarachnoid hemorrhage (Chinese version).
⁎ p value b 0.05.
G.K.C. Wong et al. / Journal of the Neurological Sciences 335 (2013) 204–209 207

Response set 1: (1) could not do it at all; (2) a lot of trouble; (3) some trouble; (4) little trouble; (5) no trouble at all. [Corresponding English version]. Response set 2: (1) strongly agree; (2) moderately agree; (3) neither agree nor disagree;
(0.85 vs 0.80, p = 0.075). There was no difference in the psychosocial

4d. Did you have to stop and rest more than you would like when walking
subscore and total score between the two versions of scoring systems.

11a. Did you have trouble seeing the television well enough to enjoy
3e. Did you have to repeat yourself so others could understand you?
5. Discussion

12a. Did you have trouble doing daily work around the house?
5.1. 12-Item Chinese version of Stroke-Specific Quality of Life Scale for

8e. My physical condition interfered with my social life.


aneurysmal subarachnoid hemorrhage total and component scores

7d. Did you need help taking a bath or shower?

10c. Did you have trouble buttoning buttons?


In the current study, we developed a 12-item Chinese version of
1c. I was too tired to do what I wanted to do.

5a. I was discouraged about my future. Stroke-Specific Quality of Life Scale for aneurysmal subarachnoid hem-
2b. I felt I was a burden to my family.

9b. I had trouble remembering things.


orrhage. The 12-item Chinese version demonstrated satisfactory inter-
nal consistency and criterion validity. The 12-item Chinese version
6c. My personality has changed.

also explained more than 90% of variance in the total, physical compo-
Responsea Dutch version selected items

nent, and psychosocial component scores of the full 49-item Chinese


version. Both component scores were sensitive to change in functional,
or using a wheelchair?

neurological, psychiatric, and cognitive outcomes. SF-36 physical health


scores and GDS correlated better with the physical and psychosocial
component scores respectively, which further supported the relevant
and distinct nature of the component scores.
a show?

Cognitive domain deficits were found to be a significant indepen-


dent contributor to functional outcome in patients after aneurysmal
subarachnoid hemorrhage [29,35]. MoCA had been demonstrated to
be a valid and sensitive screening tool for cognitive domain deficits
after aSAH [36]. In concordance with the associations with cognitive
1

2
1

1
2
2

1
2
1
2
1

complaint and cognitive functioning [8], the 12-item total score was
8b. I did my hobbies and recreation for shorter periods of time than I would like.

also found to be sensitive to change in MoCA, which would be ideal to


11a. Did you have trouble seeing the television well enough to enjoy a show?

detect the chronic sequalae after aSAH.


3a. Did you have trouble speaking, for example, get stuck, stutter, stammer,
Item total domain correlations Items selected for 12 item SSQOL-aSAH (corresponding English version)

5.2. Items selected for the 12-item Chinese version


12a. Did you have trouble doing daily work around the house?

Three out of the 12 items selected in the current study of a Chinese


2c. My physical condition interfered with my family life.

version corresponded to those selected in the Dutch version (thinking,


vision, and work domains) (Table 2) [13]. These differences might be
accounted by cultural differences between populations and supported
that individual language versions should be validated accordingly. The
10a. Did you have trouble writing or typing?

Chinese version of physical components: 1, 2, 4, 7, 10, 11, 12 (in italics); psychosocial components: 3, 5, 6, 8, 9.

item total domain correlations were both strong in both the Dutch
4c. Did you have trouble climbing stairs?

SSQOL-a: Stroke-Specific Quality of Life Scale for aneurysmal subarachnoid hemorrhage (Chinese version).
12-Item Chinese version of Stroke-Specific Quality of Life Scale for aneurysmal subarachnoid hemorrhage.

7a. Did you need help preparing food?

and Chinese versions [13]. Previously, we had also identified a different


9b. I had trouble remembering things.
5d. I had little confidence in myself.

two-component scoring systems between the Chinese and Dutch ver-


6b. I was impatient with others.
1a. I felt tired most of the time.

sions [12,13]. For our Chinese population, Chinese version calculated


physical subscore had better discrimination in neurological outcomes
and mood status than the Dutch version calculated physical subscore
in our Chinese population. The total score and psychosocial subscore
or slur your words?

were shown to have excellent discrimination in our population, using


(4) moderately disagree; (5) strongly disagree. [Corresponding English version].

both Chinese and Dutch versions of scoring system.

5.3. Limitations of the current study

The current study had several limitations. First, the sample size was
limited and did not allow individual assessments of all 49 items by
Rasch analysis. Second, test–retest reliability of the 12-item version
and validation in a separate cohort were not assessed in the current
study. Third, sensitivity to events such as rebleed, treatment modality,
cerebral infarction, and hydrocephalus was not assessed. Fourth, the as-
0.81–0.91

0.83–0.93

0.75–0.82

0.92–0.97
0.80–0.90
0.62–0.89

0.72–0.86

0.68–1.00
0.90–0.95
0.71–0.83
0.74–0.90
0.73–0.96

sessment was performed at a chronic phase and whether the perfor-


mance would be equivalent in the subacute phase remained to be
determined.
Upper extremity

In conclusion, the 12-item Chinese version of SSQOL-a has a satisfac-


Personality
Family role

Social role

tory internal consistency and criterion validity for aneurysmal sub-


Language

Thinking
Self-care
Mobility
Categories Domain

Energy

arachnoid hemorrhage patients at 12 month assessments. Chinese


Mood

Vision

Work

version calculated physical subscore had better discrimination in neu-


rological outcomes and mood status than the Dutch version calculated
physical subscore in our Chinese population. Further validation in a pro-
Table 2

spective cohort with assessment of test–retest reliability should be


10
11

12
1
2
3

5
6
7
8
9

carried out.
208 G.K.C. Wong et al. / Journal of the Neurological Sciences 335 (2013) 204–209

Table 3
Internal consistency and validity of the 12-item Chinese version.

Cronbach's alpha Explained variance (%) Mean differencea (95% CI) Limits of agreement

Physical component 0.88 0.93 0.2 (0.1 to 0.2) 0.36 to −0.68


Psychosocial component 0.71 0.92 0.1 (0.0 to 0.1) 0.50 to −0.53
Total 12 item SSQOL-a 0.90 0.96 0.1 (0.1 to 0.2) 0.24 to −0.51

12 item SSQOL-a: 12 item Stroke-Specific Quality of Life Scale for aneurysmal subarachnoid hemorrhage (Chinese version).
a
Mean difference between 49 item and 12 item SSQOL-a.

Table 4
Correlations between the Chinese version of Stroke Specific Quality of Life Scales and other outcome assessments.

mRS IADL SF-36 PH SF-36 MH MoCA GDS

49 item SSQOL-a
Total score −0.59 0.43 0.74 0.69 0.14 −0.72
Physical component score −0.58 0.44 0.81 0.61 0.40 −0.62
Psychosocial component score −0.54 0.37 0.61 0.70 0.21 −0.72

12 item SSQOL-a
Total score −0.70 0.67 0.77 0.71 0.43 −0.72
Physical component score −0.71 0.64 0.80 0.67 0.32 −0.61
Psychosocial component score −0.63 0.60 0.62 0.66 0.48 −0.71

SSQOL-a: Stroke-Specific Quality of Life Scale for aneurysmal subarachnoid hemorrhage (Chinese version).
Physical component: energy, family role, mobility, self-care, upper extremity function, vision, work.
Psychosocial component: language, mood, personality, social role, thinking.
mRS: modified Rankin Scale; IADL: Chinese Lawton's Instrumental ADL Scale.
SF-36: Short Form 36; PH: Physical Health score; MH: Mental Health score.
MoCA: Montreal Cognitive Assessment; GDS: Geriatric Depression Scale.
Correlations were bold if significant at a p value of 0.001 (two tailed) using a Bonferroni correction for 36 simultaneous tests.

Table 5
Comparisons of the Chinese and Dutch versions of 12-item Stroke-Specific Quality of Life Scale.

Excellent outcome z statistic p value Complete recovery z statistic p value Normal mood z statistic p value

Chinese 12-item version


Physical subscore 0.85 (0.77 to 0.91) 1.690 0.091* 0.82 (0.74 to 0.89) 2.198 0.028** 0.85 (0.76 to 0.92) 1.780 0.075*
Psychosocial subscore 0.83 (0.74 to 0.89) 0.261 0.794 0.78 (0.69 to 0.86) 0.275 0.783 0.86 (0.77 to 0.92) 1.066 0.287
Total score 0.86 (0.77 to 0.92) 0.785 0.432 0.82(0.73 to 0.89) 0.79 0.430 0.88 (0.80 to 0.94) 0.710 0.478

Dutch 12-item version


Physical subscore 0.80 (0.71 to 0.87) 0.74 (0.64 to 0.82) 0.80 (0.70 to 0.87)
Psychosocial subscore 0.82 (0.73 to 0.89) 0.79 (0.70 to 0.87) 0.89 (0.81 to 0.95)
Total score 0.84 (0.76 to 0.91) 0.80 (0.71 to 0.88) 0.90 (0.82 to 0.95)

Receiver operator curve (ROC) area under the curves (AUC) were presented with 95% CI.
Statistical differences were assessed between the two versions; *0.05 b p b 0.10; **p b 0.05.
Excellent outcome: modified Rankin Scale 0–1.
Complete recovery: modified Rankin Scale 0.
Normal mood: Geriatric Depression Scale 0–10.

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