Motor and Non-Motor
Symptoms in Turkish
Parkinsons disease (PD) decreases the quality of life
(QoL) of both caregivers and patients by increasing
stress and burden, and it has a negative impact on
their psychological state. In the present study, the
authors examined the impact of PD-patient motor
and non-motor clinical symptoms on the
psychological health, burden, and QoL of Turkish
caregivers. The study included 50 patients with PD
and their caregivers. Patients disease severity and
disability, motor and non-motor symptoms, disease
complications, sleep disturbances, anxiety, and
depressive symptoms were assessed with various
scales. Data were analyzed by multiple linear-
regression models to identify variables associated
with caregiver burden, psychological status, and
QoL. Anxiety and depressive symptoms exhibited
by the patients significantly affected the
psychological state of the caregivers. Caregiver
burden was increased by disease severity; the
patients degree of disability, anxiety, and
depressive symptoms; and excessive daytime
sleepiness. Caregiver QoL was significantly affected
by the presence of dyskinesia, sialorrhea, and
anxiety symptoms in patients with PD. These
findings indicate that caregiving for patients with
PD, particularly those in later stages, with
psychiatric symptoms, affects caregiver
psychological status, QoL, and caregiver burden.
478 http://neuro.psychiatryonline.org
Patients With Parkinsons
Disease Affecting Family
Caregiver Burden and
Quality of Life
Betul Ozdilek, M.D.
Dilek Ince Gunal, M.D.
These results can be used to develop treatment
approaches to improve caregivers psychological
status and QoL and decrease caregiver burden.
(The Journal of Neuropsychiatry and Clinical
Neurosciences 2012; 24:478483)
P arkinsons disease (PD) is a chronic and progressive
neurodegenerative movement disorder character-
ized by resting tremor, rigidity, bradykinesia, and
postural instability. In addition to these motor symp-
toms, non-motor symptoms, such as autonomic dys-
function; sleep problems; and affective, cognitive, and
psychiatric disorders, occur frequently in PD.1 The pro-
gressive debilitating nature of the disease often makes
having caregivers necessary.
In Turkey, much of the long-term care of these patients
is provided by family members, particularly their spouses.
Caring for a PD patient is an extremely demanding
task that can result in caregiver burden, anxiety, and
depression. These symptoms are present in caregivers
dealing with all stages of the disease, and they have
been shown to increase as the disease progresses.2
The impact of PD on quality of life (QoL) and caregiver
burden has received growing attention in recent years.
Caregiver burden is a multidimensional response to
Received October 26, 2011; revised February 11, 2012; accepted March
22, 2012. Department of Neurology, Marmara University Hospital,
Istanbul Turkey. Send correspondence to Betul Ozdilek, M.D., Erenkoy
Research and Training Hospital for Neurology and Psychiatry; e-mail:
betulozdilek@yahoo.com
Copyright 2012 American Psychiatric Association
J Neuropsychiatry Clin Neurosci 24:4, Fall 2012

physical, psychological, emotional, social, and financial
stressors associated with caring for a chronically ill
patient.3,4
QoL, with regard to health, refers to an individuals
perception of his or her well-being in the physical and
psychological, health, social, and environmental domains.
The physical health domain measures perception of the
effort necessary to perform daily activities. The social
domain measures the degree to which an individual can
get in touch and interact with family members, neighbors,
colleagues, and individuals in other communities. The
psychological health domain assesses psychological and
emotional states such as depression, anxiety, fear, anger,
and happiness.5
PD decreases the QoL of both the caregiver and pa-
tient by increasing stress and burden, and it has a nega-
tive impact on their psychological state.6 It is necessary
to understand the extent of caregiver burden and the
factors associated with it to support caregivers in their
role. Thus, we conducted a study using multidimensional
instruments to identify factors that affect anxiety and
depression, caregiver burden, and QoL among caregivers
of patients with PD.
METHODS
The study included 50 outpatients diagnosed with
clinically idiopathic PD and their primary caregivers,
who volunteered to be interviewed after a routine clinic
visit. Inclusion criteria were 1) patients age between 45
and 90 years, and caregivers age over 18 years, with at
least 5 years of education; 2) patients in Stage 2, 3, 4, or 5
of the Hoehn & Yahr (HY) scale; 3) patients Mini-Mental
State Exam (MMSE) score .24; 4) patient contact with
a responsible caregiver at least 3 hours per day for at
least the past 6 months; 5) patients who had used
antiparkinsonian therapy regularly for 6 months; and 6)
patients who were accompanied by their usual care-
givers for more than three consecutive consultations.
Demographic and clinical information obtained from
patients and their caregivers included age, gender,
marital status, years of education, presence of chronic
illness, working status, monthly family income, care-
giver relationship to the patient, living arrangements,
duration of caregiving (months), daily hours of caregiv-
ing, duration of disease (years), severity of PD, and drug
therapy. The presence or absence of motor fluctuations,
dyskinesia, hallucinations, delusions, sialorrhea, urinary
J Neuropsychiatry Clin Neurosci 24:4, Fall 2012
OZDILEK and GUNAL
and bowel incontinence, and sleep disturbances was
recorded.
The present study was approved by the University
Institutional Review Board. Patients and their caregivers
provided written informed consent.
The same neurologist interviewed all patients and
their caregivers and completed questionnaires using
face-to-face survey interviews. All questionnaires for
patients and caregivers were developed through quali-
tative research and a validation study in accordance
with Turkish cultural characteristics.
Instruments
Each patient was assessed with the Unified Parkinsons
Disease Rating Scale (UPDRS), the Schwab-England
Activities of Daily Living (SE-ADL), the Hoehn & Yahr
(HY) scale, and MMSE scales. The HY and SE-ADL
scales assess patients disease severity and disability.
Motor and non-motor symptoms, both disease and drug
complications were evaluated with the UPDRS. Sleep
disturbances in patients with PD were assessed with the
Parkinsons Disease Sleep (PDS) and Epworth Sleepiness
(ES) scales.
The Hospital Anxiety and Depression Scales (HADS)
and the Beck Depression Inventory (BDI) were used to
assess anxiety and depressive symptoms in PD patients
and their caregivers. The HADS consists of 14 items (7
for assessment of anxiety and 7 for assessment of
depressive symptoms). The scores on each scale were
summed, and, the higher the score, the higher the
degree of anxiety or depression. A HADSAnxiety scale
score of $10 indicates risk of anxiety, and a HADS
Depression score of $7 indicates risk for depression.7
The BDI is a widely-used, 21-item inventory covering
somatic, affective, and behavioral symptoms of de-
pression. Scores can range from 0 to 63, with higher
scores representing a stronger tendency toward de-
pressive feelings. A score of $17 indicates risk for
depression.8
The Zarit Burden Inventory (ZBI) measures the care-
burden on caregivers. It is a 22-item questionnaire, with
a total score range of 0 to 88. No cut-off scores have been
established, but higher scores indicate greater levels of
caregiver burden.3
The QoL of patients and their caregivers was evalu-
ated using the Turkish version of the World Health
Organization Quality of Life Assessment-Bref (WHOQOL-
BREF). The WHOQOL-BREF questionnaire consists of
27 items. Two questions assess global QoL, and the
http://neuro.psychiatryonline.org 479
PD SYMPTOMS AND FAMILY CAREGIVER BURDEN
remaining items assess specific aspects of QoL that
include the physical health, psychological health, so-
cial relationships, and environmental domains.9 The
scores of the domains were transformed into a linear
0100-point scale. Higher scores indicated better QoL
in each domain.
Statistical Analyses
We used multiple linear-regression analyses to identify
variables related to caregiver burden, psychological
status of the caregivers, and caregiver scores in each
WHOQOL-BREF domain. We used the Mann-Whitney
U test or Kruskal-Wallis test to compare the distribution
of scores for independent samples, and the Pearsons
correlation coefficient (r) to test the association between
caregiver burden or WHOQOL-BREF and the other
measures. Variables were included in the above models
following a stepwise procedure, with statistical signifi-
cance defined as p,0.05. All analyses were carried out
using SPSS software (Version 15.0 for Windows; SPSS,
Inc.; Chicago, IL, USA).
RESULTS
Demographic, Clinical, and Psychological Status of
Patients and Caregivers
Of the 50 patients, 34 (68%) were men, and the mean
age was 67.6 (standard deviation [SD]: 9.3 years (range:
4689). Forty-six patients (92%) had the tremors/rigid
form of PD, and eight patients (16%) had a family history
of PD. The distribution of patients according to HY
stage: 13 patients at Stage 2, 16 at Stage 3, 14 at Stage
4, and 7 patients at Stage 5 of the disease. The mean
duration of PD was 9.7 (3.4) years (range: 417). The
average SE-ADL score was 50%. Of all patients, 27 (54%)
had lucid dreams; 8 (16%) had mild or moderate
hallucinations; 42 (84%) had sialorrhea; 19 (38%) had dys-
kinesia; 41 (82%) had motor fluctuations; 25 (50%) had
motor blocks; 8 (16%) had objective orthostatic hypoten-
sion; and 5 patients had urinary or bowel incontinence.
All patients were receiving antiparkinsonian drugs; 5
patients (10%) used an antidepressant; 8 (16%) used an
antipsychotic agent; and 10 patients (20%) used more
than one type of psychotropic drug.
The mean age of the caregivers was 56.6 (13.2) years
(range: 2085). Most caregivers were women (N=39;
78%). Three groups of caregivers were identified ac-
cording to their relationship with the patient: spouses
480 http://neuro.psychiatryonline.org
(N=37; 74%), children (N=11; 22% [daughter: N=8; son:
N=3), and siblings (N=2; 4%). The mean duration of
marriage was 38.2 (12.0) years. All caregivers were
family members. Patients were most frequently cared for
by a spouse or daughter at the patients home. The
average caregiving duration was 26 months, and the
average amount of time spent in daily caregiving was 10
hours. Psychotropic drugs were prescribed for 10% of
the caregivers.
The HADS score revealed that 9 of the PD patients
(18%) had anxiety symptoms, and 29 (58%) had de-
pression symptoms. The ES scale revealed that 9
patients (18%) had pathological sleepiness. According
to the PDS scale, 40 patients reported that they were
satisfied with their sleep.
The caregiver scores on the HADSAnxiety scale
revealed that 18 (36%) had anxiety symptoms, and,
according to the HADSDepression and BDI scales, 22
(44%) and 14 (28%) of caregivers, respectively, had
depression symptoms. No caregiver experienced path-
ological sleepiness.
Variables Affecting Caregivers Psychological State
No significant correlation was found between the pa-
tient and caregiver demographic characteristics and
clinical data and the caregiver HADS and BDI scores.
However, a significant difference was found between
the HADS scores of PD patients and the HADS and
BDI scores of the caregivers (p ,0.05).
Variables Affecting Caregiver Burden
According to the ZBI scale, caregivers reported feeling a
mild burden (score 27.6 [15.1]). Variables that signifi-
cantly affected caregiver burden were stage of the
disease (HY scale; r=0.42; p=0.02), the SE-ADL score
(r = 20.46; p=0.001); UPDRS I, II, III, IV-A, B, C and Total
patient score (r=0.32, p=0.02; r=0.40, p=0.004; r=0.28,
p=0.04; r=0.41, p=0.003; r=0.33, p=0.01; r=0.42, p=0.002;
r=0.37, p=0.007, respectively); dyskinesia, motor fluctu-
ations, sudden motor blocks, and daily off time
(r=0.28, p=0.04; r=0.04, p=0.01; r=0.28, p=0.04; r=0.29,
p=0.04, respectively), daily caregiving hours (r=0.47,
p,0.001), patient HADSAnxiety and Depression scores
(r=0.47, p ,0.001; r=0.43, p=0.002, respectively), patient
daytime sleepiness level (r=0.28, p=0.04), caregiver
HADSAnxiety and Depression scores (r=0.53, p=0.001;
r=0.44, p=0.001, respectively), and caregiver BDI scores
(r=0.48, p=0.001).
J Neuropsychiatry Clin Neurosci 24:4, Fall 2012

TABLE 1. Correlations Among WHOQOL-BREF Domains of the Caregivers and Other Variables in Patients and Caregivers, r (p)
WHOQOL- BREF Caregiver Domains
Variables Physical Health
Dyskinesia 20.32 (0.02)
Sialorrhea 0.01 (NS)
Patient HADSAnxiety scores 20.35 (0.01)
Caregiver HADSAnxiety scores 20.49 (0.001)
Caregiver HADSDepression scores 20.55 (0.001)
Caregiver BDI scores 20.62 (0.001)
Caregiver ZBI scores 20.30 (0.02)
WHOQOLBREF: World Health Organization Quality of Life AssessmentBref; HADS: Hospital Anxiety and Depression Scale; BDI: Beck
Depression Inventory; ZBI: Zarit Burden Inventory.
No significant relationship was found between patient
and caregiver demographics and clinical features and
other measures of caregiver burden.
Variables Affecting Caregiver QoL
No significant relationship was found between patient
and caregiver demographic characteristics and care-
giver WHOQOL-BREF domain scores (p .0.05). A
significant negative correlation was found between the
presence of sialorrhea in patients and the caregivers
Environmental Domain score and between the pres-
ence of dyskinesia and the caregivers Psychological
Health domain score. Furthermore, a significant neg-
ative correlation was found between patient HADS
Anxiety scores and caregiver scores on the Physical
Health and Environmental domains of the WHOQOL-
BREF. The caregiver HADS and BDI scores showed
a significant negative correlation with each of the
caregiver WHOQOL-BREF domain scores. Thus, care-
giver burden was negatively correlated with every
WHOQOL-BREF domain except Social Relationships
(Table 1).
DISCUSSION
In the present study, we investigated the impact of
clinical PD symptoms on the level of anxiety and de-
pression in caregivers, their QoL, and caregiver burden.
Caregiver burden and QoL should be considered when
arranging patient treatment, and measures should be
taken to lessen the burden, particularly for caregivers of
patients in the later stages of PD.2
In our study, 78% of the caregivers were women, and
22% were men. This finding is consistent with previous
studies showing that the majority of caregivers are
J Neuropsychiatry Clin Neurosci 24:4, Fall 2012
OZDILEK and GUNAL
Psychological Health Social Relationships Environment
20.29 (0.03) 20.11 (NS) 20.23 (0.10)
0.22 (NS) 0.13 (NS) 20.29 (0.03)
20.27 (0.05) 20.16 (NS) 20.37 (0.002)
20.67 (0.001) 20.29 (0.03) 20.40 (0.004)
20.76 (0.001) 20.43 (0.002) 20.55 (0.001)
20.70 (0.001) 20.28 (0.04) 20.46 (0.001)
20.42 (0.002) 20.27 (0.05) 20.44 (0.001)
women.1013 Caregiving is perceived to be a job for
wives and daughters for a variety of socioeconomic
reasons, but primarily because it is considered the mans
place to work outside the home.
All of the caregivers in our study were spouses,
children, or siblings, attesting to the impact of PD on the
family of patients. We did not intend to study only
caregivers who were family members, but we found that
the caregivers of patients who were eligible for our study
were all family members, indicating that, in Turkish
society, caregiving is primarily imposed on family
members. Our results are consistent with those of
a previous study showing that patients are cared for
by wives or daughters in the patients home.14 An
association between caregiver burden and the care-
givers relationship to the patient has been reported;15
however, we did not find a significant difference in
caregiver burden between spouses and children.
Our findings were consistent with those of Martinez-
Martin et al.,12 who reported that the daily hours of
caregiving increased as the severity of the disease in-
creased (p=0.03) and daily functioning decreased (p=0.01).
We found a significant relationship between severity of
disease, as measured by the HY scale and the SE-ADL
percentage, and daily hours of caregiving.
Depression symptoms have been reported in 40%
50% of caregivers, and 30% have been found to ex-
perience anxiety.1114 Using psychological tests, we
found depression symptoms in 28% of the caregivers,
according to the BDI, and in 44% of the caregivers
according to the HADSDepression scale. The percent-
age of caregivers with depression symptoms, as mea-
sured by the HADSDepression scale, was similar to that
reported in previous studies; however, the percentage of
caregivers suffering depression according to the BDI
score was lower than that previously reported. We used
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PD SYMPTOMS AND FAMILY CAREGIVER BURDEN
a score of 17 as the cut-off point on the BDI scale;
however, previous studies used a cut-off point of 10.
Thus, either the HADSDepression or BDI should be
used to detect symptoms of depression in caregivers. We
found that the BDI was more appropriate for caregivers
because the HADSDepression scale includes a broader
range of depression symptoms. Female caregivers have
been reported to have more depressive symptoms than
male caregivers;11,16 however, we did not find a signif-
icant relationship between caregiver gender and other
sociodemographic features.
We found that patient anxiety and depression was the
most significant patient characteristic contributing to
caregiver anxiety and depression. This finding was
consistent with that of Miller.17 Furthermore, symptoms
of anxiety and depression in patients can cause a subtle
increase in caregiver burden and decrease QoL. These
results are consistent with those of previous studies.2,1820
According to the ZBI scores, caregivers reported
feeling a mild burden. A significant relationship was
found between the ZBI score and phase of disease,
specifying the clinical status of patients, stage of the
disease, the SE-ADL percentage, UPDRS scores, anxiety
and depression scores, and motor and non-motor
symptoms. This finding is consistent with reports in
the literature.2,1114,17,18 Thus, the burden score increases
as the severity of the disease increases and as the patient
SE-ADL percentage decreases. We did not examine the
impact of cognitive symptoms on caregivers in the present
study. Although a previous study reported a significant
relationship between caregiver burden and patient QoL,11
we found no evidence of such a relationship.
No significant difference was found between men
and women in the burden levels of daily hours of
caregiving and total caregiving time.11,16 We found that
daily hours of caregiving was significantly related to
caregiving burden (p ,0.001), but observed no signifi-
cant relationship between burden and age, gender, or
education of the caregiver. These results are consistent
with the literature.1013
Caregiver burden has been reported to cause anxiety
and depression in the caregivers.12,18,19 In the present
study, we found a relationship between the level of
caregiver anxiety and depression and the burden they
felt. It is likely that caregiver depression and anxiety
increase the caregiver burden and that increased burden
may, in turn, increase depression and anxiety.
We found no significant relationship between care-
giver QoL and WHOQOL-BREF domain scores and
482 http://neuro.psychiatryonline.org
patient sociodemographic variables. Moreover, no re-
lationship was found between the QoL of patients and
their caregivers, suggesting that caregiver QoL may
not depend on the QoL of the people they are caring
for. Anxiety and depression symptoms of the care-
givers have a direct influence on their QoL. A
significant relationship was found between the pres-
ence of dyskinesia and sialorrhea in patients and
caregiver QoL, particularly between dyskinesia and
the Physical and Psychological Health domains
(p=0.02 and p=0.03, respectively) and sialorrhea and
the environmental domain (p=0.03). Of the psycholog-
ical symptoms, patient anxiety had the most significant
effect on caregiver QoL in the Physical Health and
Environmental domains (p=0.01 and p=0.002, respec-
tively). Our data indicated that the presence of
dyskinesia, sialorrhea, and anxiety in the patients
had a substantial effect on caregiver QoL scores, and
the degree of caregiver burden influenced caregiver
QoL. Furthermore, our findings suggest that the
patient characteristics that influence caregiver burden
(i.e., severity of the disease, disability of the patients,
and UPDRS scores) have an indirect effect on caregiver
QoL; in particular, the presence of dyskinesia had
a significant effect on both caregiver QoL and burden.
These results are consistent with those reported in the
literature.12,14,21,22
Limitations of the present study include a rela-
tively small sample size and use of only scales for
assessing patient and caregiver psychological status.
A psychological-status examination may provide a
more accurate measure. Furthermore, in contrast to
the findings of Hirayama et al.,23 we believe that the
WHOQOL-BREF scale may be more useful for assess-
ing QoL in caregivers than in patients with PD because
the patients did not understand the questions clearly.
Each question was repeated three times in order to get
the most accurate response.
In conclusion, patient anxiety was the most significant
patient factor affecting caregiver psychological status.
Patient disease severity, UPDRS scores, disability,
anxiety and depression symptoms, and excessive day-
time sleepiness significantly affected caregiver burden,
and the presence of dyskinesia, sialorrhea, and anxiety
symptoms in patients with PD significantly affected
caregiver QoL. Moreover, anxiety and depression
symptoms in the caregivers, caregiver burden, and
QoL have significant mutual effects. Thus, Turkish
family members caring for patients with PD, particularly
J Neuropsychiatry Clin Neurosci 24:4, Fall 2012

patients in late stages, with psychiatric symptoms,
experience a decrease in psychological well-being, QoL,
and increased caregiver burden. These results can be
useful for developing treatment approaches that increase
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