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Evaluation of health related quality of life in patients with Parkinson's disease

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  • University of Health Sciences in Istanbul

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To evaluate the socio-demographic and clinical feature of patients with Parkinson`s disease, their health-related quality of life (HRQoL), and the relationship between these. This cross-sectional study was conducted in Istanbul University Cerrahpasa Medical Faculty Hospital, and Ministry of Health, Taksim and Haseki Education and Research Hospitals in Istanbul, Turkey. The sample consisted of 80 Parkinson`s disease patients who attended the Parkinson`s and Movement Disorders Outpatient Clinics between March and July 2006. Data were collected using the questionnaire form, which included socio-demographic and clinical characteristics, the Hoehn and Yahr clinical staging scale, the Unified Parkinson`s Disease Rating Scale (UPDRS), and the Nottingham Health Profile. The mean age of the patients was 67.5 +/- 8.76 years, 62.5% were males, and approximately 47.5% were in stage one of Parkinson`s disease. The highest mean score on the UPDRS was for the "motor function" part (11.62 +/- 7.45); the quality of life dimensions of, in particular, "energy" (69.79 +/- 21.17), "physical movement" (44.95 +/- 24.23), "sleep" (36.36 +/- 31.96), and "emotional reactions" (35.01 +/- 31.55) were affected. This study indicates that patients with Parkinson`s disease who experienced the most problems in mobilizing, had an increase in their scores on the UPDRS with the advancing stage of the disease, and their HRQoL was also negatively affected. Studies such as this one have the potential to improve the quality of individualized care.
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Evaluation of health related quality of life in patients with
Parkinsons disease
Cemile Savci, BSN, MSc, Merdiye Sendir, BSN, PhD.
60
Parkinsons disease (PD) is a chronic progressive
neurodegenerative disease of the central nervous
system and is characterized by motor, cognitive, and
behavioral disturbances. Its onset generally occurs
between the ages of 50 and 65, and it is a leading cause
ABSTRACT
 

 (HRQoL)
  
       

80 

2006
2006

     
NHPUPDRS
62.5% 67.5±8.76 
47.5%
11.62±7.45UPDRS
69.79±21.17     
±36.36  44.95±24.23  
31.55 ±35.0131.96



UPDRS
(HRQoL)
 

Objectives: To evaluate the socio-demographic and
clinical feature of patients with Parkinson’s disease,
their health-related quality of life (HRQoL), and the
relationship between these.
Methods: is cross-sectional study was conducted
in Istanbul University Cerrahpasa Medical Faculty
Hospital, and Ministry of Health, Taksim and Haseki
Education and Research Hospitals in Istanbul,
Turkey. e sample consisted of 80 Parkinson’s disease
patients who attended the Parkinsons and Movement
Disorders Outpatient Clinics between March and July
2006. Data were collected using the questionnaire
form, which included socio-demographic and clinical
characteristics, the Hoehn and Yahr clinical staging
scale, the Unified Parkinson’s Disease Rating Scale
(UPDRS), and the Nottingham Health Profile.
Results: e mean age of the patients was 67.5 ±
8.76 years, 62.5% were males, and approximately
47.5% were in stage one of Parkinson’s disease.
e highest mean score on the UPDRS was for the
“motor function” part (11.62 ± 7.45); the quality of
life dimensions of, in particular, “energy” (69.79 ±
21.17), “physical movement” (44.95 ± 24.23), “sleep
(36.36 ± 31.96), and “emotional reactions” (35.01 ±
31.55) were affected.
Conclusion: is study indicates that patients with
Parkinson’s disease who experienced the most problems
in mobilizing, had an increase in their scores on the
UPDRS with the advancing stage of the disease, and
their HRQoL was also negatively affected. Studies
such as this one have the potential to improve the
quality of individualized care.
Neurosciences 2009; Vol. 14 (1): 60-66
From the Departments of Neurology (Savci), Ministry of Health, Taksim
Education and Research Hospital, and Fundamentals of Nursing
Department (Sendir), Florence Nightingale College of Nursing, Istanbul
University, Istanbul, Turkey.
Received 1st July 2008. Accepted 19th November 2008.
Address correspondence and reprint request to: Dr. Merdiye Sendir, Istanbul
University, Florence Nightingale College of Nursing, Abide-i Hürriyet
Cad 34381, Istanbul, Turkey. Tel. + 90 (212) 4400000 Ext. 27119.
Fax.+ 90 (212) 2244990. E-mail: msendir@istanbul.edu.tr
61
Neurosciences 2009; Vol. 14 (1)
HRQoL in patients with Parkinson’s disease … Savci & Sendir
of neurological disability in individuals older than 60
years.1 e disease affect males and females equally in
all races.2 Parkinsons disease include many symptoms
that can result in a reduction in the quality of life
(QoL). ey have major adverse impact on patients’
lives. Patients’ symptom such as tremor, hypokinesia,
rigidity, hypophonic voice, painful dystonia, postural
abnormalities, gait disorders, sleep disturbances,
depression, and drug related problems may progressively
lead to falls, social embarrassment, loneliness, and
increasing dependence on others for activities of daily
living (ADLs).3 e symptoms associated with PD and
its management affect an individuals’ usual or expected
physical, social, and mental well-being, referred to
here, as health-related quality of life (HRQoL).3,4
e concept of QoL goes beyond the dimensions of
health functioning to performance of social roles,
mental acuity, emotional states, subjective well-being,
and interrelationships. Life satisfaction, self-esteem,
and physical health have also been identified as key
elements of QoL.5,6 Health-related quality of life refers
to a diverse range of the patients’ own perceptions and
experiences of their disease, and could be considered as
the ultimate outcome measure of health care, beyond
single symptoms.6 Health care professionals are learning
to recognize and accept QoL as a major criterion in
the evaluation of health interventions. Also, QoL has
been reported to be the primary concern of patients
with PD and their family members.5 Quality of life
of patients with a chronic disease like PD includes the
patient’s symptoms and physical functioning, as well as,
psychosocial variables. A few studies have estimated that
QoL in PD is influenced by depression, motor disability,
and cognitive impairment.7-9 A study published by
Slawek et al10 shows not only QoL in relation to clinical
parameters, but also the impact of certain psychosocial
and demographic factors included in the analysis.
Current literature has focused on the management of
mobility in PD, and little attention has been devoted
to psychosocial issues. is paucity of literature
is attributed to the belief that if motor symptoms
are treated, psychosocial aspects of the disease will
spontaneously improve.5 Behari et al3 emphasized that
health care professionals today not only give treatment
and care to increase their patients’ lifespan, they also
have the goal of increasing their HRQoL. To improve
QoL in patients with PD, health care professionals must
have information about the factors affecting patients’
physical and emotional well-being. Understanding the
factors that weigh most on the patient’s own perception
of themselves and their disease, will lead to appropriate
care interventions that would improve patient’s
well-being, and help modify HRQoL deficits. us,
individualized care will be assisted in facilitating the
development of goals with the patient and family, which
are congruent with achieving maximum QoL.4,5,11,12
Several researchers stress the contribution that nurses
can make to the fulfilment of QoL, life satisfaction, self-
esteem and physical health, as well as, the importance
of setting goals with the patient and their family.5,11,12
e overall goal of care in PD patients is to improve the
prognosis, and reduce the impact of the disease in both
patients and their caregivers, with skilled medical and
nursing intervention, to maintain functional ability,
and retain independence. Medical treatment with drugs
and surgical techniques is effective in PD, but there is
also a major role for nurses in helping the patient come
to terms with the disease, providing information, and
managing care. e provision of timely and appropriate
care for patients can do much to enhance QoL.5,7,12-14
is study aimed to determine the socio-demographic
and clinical features of patients with PD, their HRQoL,
and the relationship between these.
Methods. is cross-sectional study was undertaken
in one university and 2 state hospitals in Istanbul,
Turkey between March and July 2006. Eighty patients
with Parkinson’s disease, who attended the Parkinson’s
and Movement Disorders Outpatient Clinics of Istanbul
University Cerrahpasa Medical Faculty Hospital, and
Ministry of Health, Taksim and Haseki Education
and Research Hospitals, were included in this study.
e inclusion criteria for these patients were having
the ability to communicate, being cooperative in an
interview, and willingness to participate in the research.
e permission to undertake this study was received
from the ethical committee of the hospitals. Prior to the
study, the patients were informed of the purpose of the
research, and what would be expected of them. Informed
consent was obtained from each participant, and they
were assured of their right of refusal to participate, or to
withdraw from the study at any stage. e anonymity
and confidentiality of participants were guaranteed.
In the data collection questionnaire form, the unified
Parkinson’s disease rating scale (UPDRS), the Hoehn
and Yahr clinical staging scale, and the Nottingham
health profile (NHP) were used. e questionnaire form
was based on the literature review,2,3,7,14,15 including
questions on socio-demographical characteristics and
diseases of the patients, as well as, details such as age,
gender, marital status, duration of illness, working
status, type of first PD symptoms, and treatment.
Parkinsonian disability was assessed by the UPDRS.
is scale is frequently used in PD-focused research. In
this study, the first of the 2 dimensions of full UPDRS
was used. e second UPDRS dimension, which
query complications of dopaminergic therapy, was not
included. e first dimension of the UPDRS is divided
62
HRQoL in patients with Parkinson’s disease … Savci & Sendir
Neurosciences 2009; Vol. 14 (1)
into 3 parts, all scored on a quantitative 5-point scale
(0-4), measuring the severity of signs and symptoms
of PD: UPDRS-mental (mental symptoms, behavior,
or mood), UPDRS-activities of daily living (ADLs),
and UPDRS-motor (based on a motor examination).
ese parts in the UPDRS were used to evaluate illness
severity and sickness influences on ADLs performance
and mobility; each item representing a certain sign or
symptom of Parkinsonism, is rated according to severity
from 0 (normal) - 4 (most severe). e UPDRS score
can range from 0 - 124, and is calculated from the
sum of the scores of 31 items. A higher score indicates
more severe PD. e validity and the reliability of
the Turkish version of the UPDRS was established by
Memis,12 the UPDRS was used along with Hoehn and
Yahr clinical staging scale.3,8,11,16 e Hoehn and Yahr
clinical staging scale is a standard way to classify the
stages of PD. e Hoehn and Yahr scale give scores for
severity of the disease from 0 (no sign of disease) - 5
(wheelchair-bound, or walking only with assistance).
e stages are classified as mild (stage 1-2), moderate
(stage 3), and severe (stage 4-5).1,8,11,16 e NHP is
a widely used British-designed instrument for the
assessment of health status, to determine perceived
health-related problems in the physical, emotional, and
social domains. e NHP is a 2-part-self-administered
questionnaire. It is common for NHP-1 to be used
alone, and this approach was adopted in this study,
omitting the optional part 2, that is supposed to give
a rough guide to how far such distress is affecting the
ADLs. In this study, HRQoL was evaluated with the
first part of the NHP (NHP-1), which contains 38
statements covering 6 health dimensions: pain (8 items),
social isolation (5 items), emotional reactions (9 items),
physical mobility (8 items), sleep (5 items), and energy
(3 items). Respondents answered “yes” or “no” to a total
of 38 questions. Each item carries a specific weight, so
that within each dimension the weighted scores range
from 0 (indicating good health) - 100 (indicating poor
health). A higher score indicates poorer HRQoL. e
NHP-1’s usefulness in PD research has been reported
elsewhere. e NHP is short, easy to complete, generic,
valid, and reliable.8,15-19 In this study, the Turkish version
was used; the reliability and the validity of the Turkish
version of NHP has established by Küçükdeveci et
al.17 Data collection instruments were administered by
a researcher to all patients in a face-to-face interview.
Most of the patients needed assistance in filling the
questionnaire. During data collection, each question
was read to the patients, and their responses were
entered into the questionnaires, as most of the subjects
were poor at basic reading, and writing skills.
e statistical analysis of the data was conducted
using the Statistical Package for Social Sciences version
10.0 for Windows licensed to Istanbul University.
Descriptive statistics were used to determine patients’
socio-demographic and disease characteristics. e
relationship between UPDRS and NHP dimensions was
examined using Spearman’s rank correlation procedure.
Finally, the Kruskal-Wallis test was used to compare
the differences between the NHP dimensions and
the Hoehn and Yahr stages. A p<0.05 was considered
statistically significant.
Results. A total of 47.5% of the patients were in
the 61-70 year old age group, and their mean age
was 67.5 ± 8.76 years. Most of them were male, and
married. For the majority, the duration of PD was
between 5 and 9 years, with an average of 7.41 ± 4.02
years. Most of them were not working for reasons other
than PD (for example, retirement). e beginning
symptoms of PD most frequently experienced were
hand tremors, and slowness in movement. e most
common medication patients used in the treatment of
PD were levodopa (L-dopa), and dopamine agonists. It
was determined that 47.5% of patients were in stage-1.
Due to problems with communication and advanced
functional deficits, no patients in stage-5 were included
in the study (Table 1). e mean UPDRS score was
25.09 ± 15.85. e highest mean from the UPDRS
parts was for “motor examination”, followed by ADLs”
and “behavior, mental, and mood”. In the examination
of the UPDRS item score means, the highest (1.38 ±
1.23) was for an item (turning in bed and adjusting
bedclothes) in part II; the next highest (1.26 ± 0.56)
was for an item (body bradykinesia and hypokinesia) in
part III. e lowest mean (0.98 ± 1.01) was for an item
(motivation/initiative) in UPDRS part I. Regarding
NHP dimensions, “energy” was affected the most, and
“pain” the least (Table 2). e relationship between NHP
and UPDRS is shown in Table 3. ere was a significant
positive correlation between NHP’s “physical mobility”
dimension and the “behavior, mental, and mood”,
ADLs”, and “motor examination” parts of UPDRS, as
well as, with the UPDRS total score. As the parts and
total scores of UPDRS increased, the NHP “physical
mobility” score also increased. Also, we found a
significant positive correlation between NHP’s “energy
dimension and the “behavior, mental, and mood”,
and ADLs” parts, and the total score of UPDRS; the
positive correlation with the “motor examination” part
score was also significant, but at a p<0.05 level (Table 3).
ere was a significant positive correlation between the
“paindimension of NHP and the UPDRS “behavior,
mental, and mood”, “ADLs”, and “motor examination
parts, as well as, UPDRS total score (Table 3). We found
a positive correlation between the sleep” dimension
of NHP and the “behavior, mental, and mood” part
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Neurosciences 2009; Vol. 14 (1)
HRQoL in patients with Parkinson’s disease … Savci & Sendir
Table 1 - Socio-demographic and clinical features of
patients (N=80).
Variables n (%)
Age
40-50
51-60
61-70
71 and up
6
9
38
27
(7.5)
(11.3)
(47.5)
(33.7)
Gender
Female
Male
30
50
(37.0)
(63.0)
Marital status
Married
Unmarried
Widow
55
4
21
(68.8)
(5.0)
(26.2)
Duration of diseases
1-4 years
5-9 years
10 years and up
20
33
27
(25.0)
(41.3)
(33.7)
Working status
Working
Not working due to PD
Not working due to other reasons
7
8
65
(8.7)
(10.0)
(81.3)
e symptoms present at the
beginning of the diseases*
Bradykinesia
Rigidity
Pain
Gait disorders
Speech disorders
63
25
19
9
8
3
(78.7)
(31.2)
(23.8)
(11.3)
(10.0)
(3.8)
Treatment*
L-Dopa
Dopamine agonists
Catechol-O-Metil Transferaz (COMT)
Amantadine
Anticholinergics
76 (95.0)
42 (52.5)
10 (12.5)
8 (10.0)
1 (1.3)
Hoehn and Yahr Stages
Stage-1 ( unilateral involvement only)
Stage-2 (bilateral involvement only)
Stage-3 (disability is mild to moderate)
Stage-4 (fully developed severe disease;
disability marked)
Stage-5 (confinement to bed or
wheelchair)
38 (47.5)
22 (27.5)
17 (21.2)
3 (3.8)
- -
*Multiple choices have been selected
Table 2 - Mean scores and standard deviations of UPDRS
and NHP.
Scale Mean ± SD
UPDRS parts
I- Behavior, mental and mood 2.59 ± 2.17
II- Activities of daily living (ADL) 11.02 ± 7.40
III- Motor examination 11.62 ± 7.45
NHP dimensions
Physical mobility 44.95 ± 24.23
Energy 69.79 ± 21.17
Pain 20.41 ± 28.79
Sleep 36.36 ± 31.96
Social isolation 27.97 ± 31.29
Emotional reactions 35.01 ± 31.55
UPDRS - Unified Parkinson’s Disease Rating Scale,
NHP - Nottingham Health Profile
of UPDRS, and a significant positive correlation with
ADLs” and “motor examination” parts (Table 3). ere
was a significant positive correlation between NHP’s
“social isolation” dimension and UPDRS’s “behavior,
mental, and mood”, “ADLs”, and “motor examination
parts, as well as, UPDRS total score (Table 3). In addition,
we found a positive relationship direction between
the “emotional reactions” dimension of NHP and the
UPDRS “behavior, mental, and mood”, “ADLs”, motor
examination” parts, and a total score. It was determined
that the worsening of patients’ functional status had a
negative effect on their QoL (Table 3). In comparing
the patients’ disease stage with the dimensions of NHP,
significant differences were found in NHP results,
depending on the PD stage. e advancement of the
PD stage had a negative effect on patients’ QoL (Table
4).
Discussion. Parkinson’s disease is an illness, which
has a negative effect on the physical, emotional, and
social aspects of ADLs, thereby decreasing QoL. e
assessment of socio-demographic and clinical feature of
patients with PD, their HRQoL, and the relationship
between these, may assist in determining individualized
care goals, and strategies. In this way, enhanced
psychosocial adjustment to PD may improve HRQoL.
e age demographic results obtained in our study are
similar to those reported in the literature, that PD patients
are between 40-75 years, and that, it is frequently seen
in individuals over 60 years.2,3,15,20 Although a significant
difference in prevalence based on gender was not found
for PD, women are slightly more likely to have it.2,21 Our
findings were supported by the literature, and by Behari
et al,3 and Delil et al’s2 studies, in which the majority of
the patients were male.
In the beginning, PD patients reported that they
experienced hand tremors and slowness in movement.
Delil et al2 reported. that the first beginning symptom
of the disease in 456 patients was tremors, and in 174
patients it was bradykinesia. ese research results are
similar to ours, which are supported by some additional
literature.2,15,20 e goal of the medical treatment
and management of PD, is to keep to a minimum,
limitations in movement, and to maintain hope for life.3
Levodopa is the most effective medication in relieving
the symptoms of PD, and its use improves the QoL
of most patients. Physicians prefer dopamine agonists
because there are indications that they have long-term
effects, and may slow the advance of the disease. e fact
that the majority of patients in this study were taking
L-dopa and dopamine agonists in the treatment of PD,
is consistent with the literature.4,20,22
According to Hoehn and Yahr’s clinical staging scale,
the majority of the patients were in the first 2 stages,
64
HRQoL in patients with Parkinson’s disease … Savci & Sendir
Neurosciences 2009; Vol. 14 (1)
Table 3 - Correlations of NHP dimensions with parts and total scores of UPDRS.
NHP UPDRS
Behavior, mental, and mood
(I)
Activities of daily living
(II)
Motor examination
(III)
Total score
rsp-value rsp-value rsp-value rsp-value
Physical mobility 0.693 0.001** 0.559 0.001** 0.727 0.001** 0.615 0.001**
Energy 0.333 0.003** 0.369 0.001** 0.284 0.011* 0.299 0.007**
Pain 0.509 0.001** 0.410 0.001** 0.466 0.001** 0.512 0.001**
Sleep 0.281 0.011* 0.382 0.001** 0.346 0.001** 0.160 0.158
Social isolation 0.557 0.001** 0.523 0.001** 0.538 0.001** 0.522 0.001**
Emotional
reactions 0.496 0.001** 0.567 0.001** 0.483 0.001** 0.411 0.001**
rs - Spearman correlation co-efficient, UPDRS - Unified Parkinson’s Disease Rating Scale, NHP - Nottingham Health Profile,
*p<0.05, **p<0.01
Table 4 - Comparison of NHP dimensions mean scores and Hoehn and Yahr stages.
NHP
dimension
Hoehn and Yahr Stage Xkw P-value
1 2 3-4
Mean ± SD Mean ± SD Mean ± SD
Physical
mobility 34.89 ± 22.13 44.29 ± 23.95 64.80 ± 15.3 22.58 0.001
Energy 62.92 ± 17.46 70.0 ± 20.40 82.60 ± 23.27 11.82 0.001
Pain 7.43 ± 16.51 18.17 ± 24.67 47.50 ± 33.58 27.61 0.001
Sleep 29.02 ± 26.31 32.60 ± 32.17 54.43 ± 35.88 7.59 0.022
Social isolation 14.45 ± 25.22 27.74 ± 25.13 53.88 ± 32.57 21.47 0.001
Emotional
reactions 23.71 ± 23.01 26.96 ± 23.80 65.28 ± 34.45 18.93 0.001
Xkw- Kruskal Wallis, UPDRS - Unified Parkinson’s Disease Rating Scale, NHP - Nottingham Health Profile
which suggests that they had not yet become dependent
in their ADLs. e data from studies by Karlsen et al,8
Delil et al,2 and Kul et al23 are consistent with these
findings. Parkinsonian disability was experienced the
most in the motor examination (body bradykinesia and
hypokinesia), and ADLs (turning in bed and adjusting
bedclothes) parts. Bradykinesia is one of PD’s 3 basic
symptoms that causes the most significant disability,
and can develop early or late. Bradykinesia causes a
clear slowness in all ADLs.20 In their study, Delil et al2
determined that tremors and bradykinesia began at the
same time, as the first symptom in patients. Kul et al23
reported that PD patients have difficulty getting from
a back-lying position in bed to sitting up. Our study
findings are consistent with these studies, and the
literature.2,20,22,23
In all of the studies that evaluated QoL in PD, it
was determined that there is a parallel increase in the
negative effect of the disease on QoL as the PD stage
increases.1,3,8,11,15 In research evaluating the QoL of
individuals with PD using the NHP, as reported by
Karlsen et al,15 Wasielewski and Koller,7 Karlsen et al,8
and Pechevis et al,9 it was determined that particularly
the QoL dimensions of “energy”, “sleep” and “emotional
reactionswere negatively affected by the progression of
PD. In our study, the NHP dimension most affected was
“energy”, and the dimension least affected was pain”.
In our study, a significant relation was found between
the NHP “physical mobility” dimension and several
UPDRS parts, as well as, the total UPDRS. Karlsen et al8
determined that as the diseases’ clinical degree increased
physical inability, UPDRS scores also increased. Low
65
Neurosciences 2009; Vol. 14 (1)
HRQoL in patients with Parkinson’s disease … Savci & Sendir
energy is commonly seen together with depressive signs
and symptoms, such as fatigue. Karlsen et al15 also
determined low energy for 30% of the patients in their
study. Rigidity and inability to move extremities in PD
often causes muscle pain. Although rigidity is rarely seen
in the spinal area, it can cause patients to have back pain.
Rigidity in the muscles supporting the femur and feet
can result in painful cramps.15,20,24 In this research, the
significant correlation between NHP’s “pain” dimension
and UPDRS’s parts is consistent with the literature.
Immobility and rigidity that continues all night
have been reported in the literature along with repeated
Parkinsons signs and symptoms, such as irregular
respiration, and nocturia or psychiatric disorders, such as
depression and anxiety. All of these can lead to changes in
sleep pattern and sleep disorders, and can have a negative
effect in both the patient and the spouse’s QoL.11,20,25
In the study by Yüksel et al,25 it was determined that as
UPDRS scores increased, Parkinsons disease sleep scale
(PDSS) scores decreased. As PDSS scores decreased, an
individual’s problem with sleep increased, as the patients’
QoL and ADLs worsened. e results of this study are
consistent with those found by Yüksel et al.25
Within the scope of an individual’s wholeness, it
is inevitable that patients whose emotional and social
aspects are good, will be better able to continue their
ADLs, and maintain their QoL. e emotional reactions
of anxiety and depression are important determinants of
the QoL of an individual with PD.26,27 In a study by Onur
et al,27 the UPDRS mean score for Parkinsons patients
with depression was found to be higher at a statistically
significant level, than for those without depression.
Similarly, we found significant correlations between
NHP’s social isolation and “emotional reactions
dimensions, and the UPDRS. According to our findings,
as the disease stage advanced, all dimensions of NHP, and
consequently the patients’ QoL were negatively affected.
Delil et al,2 determined a clear relationship between
advanced stages and bradykinesia; as the disease stage
advanced, physical inability increased dependence, and
the need for assistance with ADLs. Furthermore, Kul et
al23 examined the patientsability to perform physical
activities according to their illness stage, and a direct
decrease was found from stage-1 to stage-4. Karlsen et
al15 determined, as the illness stage increased, patients’
energy level decreased. In the literature, it has also been
reported that as the disease stage increases, there is an
increase in the pain score due to the increased rigidity.15,28
Also, together with an advance in disease stage, there is
a parallel increase in the difficulty of carrying out social
roles and responsibilities. Patients who see themselves
as a burden in social settings frequently feel lonely and
inadequate, and may experience feelings of guilt, and
social isolation.5,29 Emotional reactions are frequently
seen, in the form of anxiety and depression. Psychotic
symptoms are seen as a major symptom or treatment
complication of the advanced stages of PD.29 In a study
by Öztürk et al,26 more than 40% of patients with PD
were found to have anxiety disorders, including panic
attacks and social phobias.
In conclusion, the results obtained from this study
show that the socio-demographic characteristics, such
as, age and gender of the PD patients participating in
this study, reflected those of PD patients reported in
the literature. In addition, a significant relationship was
determined between illness characteristics, and HRQoL.
As the stage of PD increased, the UPDRS scale and
item scores increased, and had a negative effect on all
dimensions of the NHP, and therefore on HRQoL.
Patient problems can be determined by continually
monitoring patients’ behavior, their mental and
emotional state, and their ADLs and motor examination
findings, planning the appropriate care can increase the
quality of individual care.
Educational programs, which will systematically give
all information needed about the illness, diagnosis and
treatment, and for maintaining ADLs, must be planned
and continued for individuals who assist PD patients.
In this way, the providers well be able to give care that
is based on patients’ needs, determined by individual
interviews. Collaborating with other health disciplines in
the health care facility is important. Counseling is needed
for patients, their families, and others who care for the
patients, as are support groups, and social organizations.
In particular, for young patients, increasing the number
of organizations and facilities that can assist them with
relationships within their families, and also with finding
financial assistance needed because of the possible early
retirement, could decrease the individuals’ concerns
about their future, and help them with psychosocial
adaptation to their illness.
is study has several limitations. First, the sample
size was small. Second, a generic instrument for
evaluation of HRQL was used in this study. Furthermore,
there have been a few studies on this subject in Turkey.
erefore, this research could be repeated with larger
samples using QoL questionnaires specific for PD. It is
also recommended that studies be conducted, not just
with the patients, but also with their life partners, and
with those who provide their care.
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... 3.25 (Savci and Sendir, 2009) 5.75 (Schrag et al., 2000) 3.75 (Slawek et al., 2005) 5.75 (Soh et al., 2013) 7.50 (Winter et al., 2010a) 2.13 (Winter et al., 2011) Speech problems 4 3 (J. C. Gomez-Esteban et al., 2007;Muslimovic et al., 2008;Schrag et al., 2000) 1.56 6.25 6.25 (Nutt et al., 2014) TREMOR PD SUBTYPE tremor/ non-tremor/ global rigiditystiffness*/ akinesia* ...
... Y SCORES ATTITUDE UPDRS part 1 Item: "motivation initiative*"/ Inherent control believe: Mastery*/ Illness perception: "Serious consequences and timeline cyclical"/ second control order theory of mind/ optimism*/ pessimism/ resilience*/ locus of control "powerful others"/ coping style "escape avoidance score" and "emotion-function coping" and "painful problem solving*" and "accepting responsibility*"/ personality traits "extraversion" and "neuroticism*" and "type D"/ somatic perception/ sense of coherence*/ self-perceived autonomy*/ self-esteem/ positive affect 9.00 (Frazier, 2000) 8.75 (Gison et al., 2014a) 2.25 (Gison, et al., 2014) 4.88 (Gruber-Baldini et al., 2009) 6.50 21.25 (Hurt et al., 2013) 8.50 (Koplas et al., 1999) 9.00 (Montel et al., 2009) 9.00 (Robotto m et al., 2012) 15.00 (Roh et al., 2009) 4.25 (Simpson et al., 2014) 10.00 (Spadaro et al., 2013) (Gan, et al., 2014) 24.00 (Hinnel et al., 2011) 2.50 17.00 (Li et al., 2010) 18.00 ( (Andreadou et al., 2011;Avidan et al., 2013;Benito-Leon et al., 2012;Cano-de-la-Cuerda et al., 2011;Carod-Artal et al., 2007;Cubo et al., 2002;Duncan et al., 2013;Gallagher et al., 2010;Gruber-Baldini et al., 2009;Hurt et al., 2013;Karlsen et al., 1999;Kleiner-Fisman et al., 2010;Koplas et al., 1999;Kudlicka et al., 2013;Li et al., 2010;Muslimovic et al., 2008;Qin, Zhang, Sun, Liu, et al., 2009;Rahman et al., 2008;Rodriguez-Violante et al., 2013;Schrag et al., 2000;Shimbo et al., 2004;Simpson et al., 2014;Winter, von Campenhausen, Gasser, et al., 2010b;Zhao et al., 2008;Ziropada et al., 2009) 6.00 (Karlsen et al., 1998) 3.50 (Klepac and Trkulja, 2009) 14.00 (Kuopio et al., 2000) 5.25 (Lee et al., 2006) 3.33 7.00 (Leroi et al., 2012) 25.00 (Nutt et al., 2014) 0.59 (Qin et al., 2009a) 5.00 3.00 (Ray et al., 2006) 7.50 (Roh et al., 2009) 12.75 (Santos-Garcia and de la Fuente-Fernande z, 2013) 6.50 (Savci and Sendir, 2009) 13.50 (Shearer et al., 2012) 9.38 (Slawek et al., 2005) 14.25 (Soh et al., 2012a) 5.75 (Soh et al., 2013) 13.00 (Song et al., 2014) 10.5 (Suzuka mo et al., 2006) 9.00 (Tamás et al., 2014) 7.50 (Valkovic et al., 2014) ...
... 6.51 (Savci and Sendir, 2009) 5.75 (Soh et al., 2013) 6.00 (Song et al., 2014) 12.00 (Visser et al., 2008) 8.50 (Winter et al., 2010a) 5.00 (Winter et al., 2010b) 5.32 (Winter et al., 2011) 4.50 (Zhao et al., 2008) 14.25 (Ziropada et al., 2009) PRESENCE OF NEUROPSYCHIATRIC SYMPTOMS paranoid symptoms/ psychiatric symptoms/ neuropsychiatric disorders (NPI)/ taking antipsychotic medication/ mental health 11 7 (Barone et al., 2009;Gallagher et al., 2010;Kleiner-Fisman et al., 2010;Pontone et al., 2011;Winter et al., 2011;Winter, von Campenhausen, Gasser, et al., 2010b;Winter, von Campenhausen, Popov, et al., 2010) 4.88 58.51 14.25 (Bach et al., 2012) 10.00 (Gomez-Esteban, 2011) 9.50 (Lawson et al., 2014) 18.75 (Nutt et al., 2014) 6.00 (Visser et al., 2008) COMORBIDITY IN GENERAL-heart function/ cardiovascular symptoms/ dyslipidemia/ diabetes mellitus/ arthritis/ stroke/ osteoporosis/ skin disorders/ respiratory systems/ hyperventilation/ number of comorbidities 15 11 (Andreadou et al., 2011;Benito-Leon et al., 2012;Carod-Artal et al., 2008;Duncan et al., 2013;Gallagher et al., 2010;Greene & Camicioli, 2007;Hinnel et al., 2011;Hurt et al., 2013;Quittenbaum & Grahn, 2004;Shimbo et al., 2004;S. E. Soh, McGinley, Watts, Iansek, Murphy, et al., 2012) 3.54 60.25 12.00 (Barone et al., 2009) 3.25 (Jones et al., 2009) 12.50 (Muslimo vic et al., 2008) 18.75 (Nutt et al., 2014) 5.75 (Soh et al., 2013) 8.00 (Spadaro L., 2013) LONGER DISEASE DURATION medical records/ asked patient 58 38 (Bach et al., 2012;Behari et al., 2005;Bucks et al., 2011;Cano-dela-Cuerda et al., 2011;Carod-Artal et al., 2008;Chapuis et al., 2005;Cubo et al., 2002;Dubayova et al., 2009aDubayova et al., , 2009bGallagher et al., 2010;Gan et al., 2014;J. ...
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To identify the clinical and demographic factors that are associated with a poor quality of life in patients with Parkinson's disease. 233 of a total of 245 patients identified in a community based study in a Norwegian county participated in the study. Quality of life was measured by the Nottingham Health Profile (NHP). The results were compared with those in 100 healthy elderly people. Clinical and demographic variables were determined during a semistructured interview and by clinical examination by a neurologist. Multiple regression analyses were used to determine which variables were associated with higher distress scores. Patients with Parkinson's disease had higher distress scores than the healthy elderly people for all the NHP dimensions. The variables that most strongly predicted a high total NHP score were depressive symptoms, self reported insomnia, and a low degree of independence, measured by the Schwab and England scale. Severity of parkinsonism contributed, but to a lesser extent. Nearly half the patients with Parkinson's disease reported lack of energy, compared with a fifth of the control group. Severity of depressive symptoms and a higher score on the UPDRS motor subscale only partly accounted for this finding. Only 30% of the variation in NHP energy score was explained by the predictive variables identified in this study. Parkinson's disease has a substantial impact on health related quality of life. Depressive symptoms and sleep disorders correlated strongly with high distress scores. Patients with Parkinson's disease should be examined for both conditions, which require treatment. Low energy was commonly reported and may be a separate entity of Parkinson's disease.
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Quality of life is an important issue in the treatment of Parkinson's disease. Both general and disease specific quality of life scales are now being used in interventional trials. In the Sinemet CR First trial, the long-acting preparation was found to be superior to the immediate release preparation in several measures of the Nottingham Health Profile, a generic quality of life scale. In particular social isolation and emotional reactivity was better with Sinemet CR. The long acting drug was also superior for all five years of the study, for activities of daily living subscale of the UPDRS. It is concluded the Sinemet CR may have advantages over the immediate release preparation on Quality of life issues in PD.
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In recent years it has become apparent that nurses have several key roles in the treatment of Parkinson's disease. These include the practice of skilled clinical care, the provision of advice and education, communicating with patients and carers, and also between health and social care agencies. Their goals are to facilitate good clinical care, to reduce morbidity (both physical and psychological) and to achieve better informed patients by the reduction of misinformation, fear and distress caused by the diagnosis and consequences of this disease. The overall goal is to improve the prognosis and to reduce the impact of this disease on patients and their care givers. To achieve these goals the specialist nurse needs skills in assessment, reassessment and counselling in addition to knowledge of the disease and its management. The training needs have been established for the nursing profession to address these issues, and courses have been established and approved. A scale comprising four clinical management stages has been proposed: initially around the time of diagnosis; stable maintenance therapy; a more complex management stage, and palliative care. Nursing interventions and priorities differ in these arbitrary stages. Several models of nursing provision have been piloted in the United Kingdom, and results of evaluations are keenly awaited. Meanwhile, specialist nurses are proving to be popular with patients and carers, medical specialists, and the Parkinson's Disease Society which aims to see their provision in each Health District throughout the United Kingdom. In summary, the nursing role is complementary to those of the other members of the multi-disciplinary health team that aims to improve the quality of life of PD patients and their carers.
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Outcome measures are increasingly used to assess the impact of diseases such as Parkinson's disease (PD) from the patient's perspective. These measures, in the form of questionnaires to assess health-related quality of life (HR-QOL), are of 2 main kinds: generic and disease-specific. The former is intended to be relevant to the widest range of health problems; the latter is developed specifically to assess HR-QOL for a specific condition. Possible consequences of PD have been assessed by generic instruments such as the Sickness Impact Profile (SIP), the Nottingham Health Profile (NHP), the Medical Outcomes Study 36-Item Short Form (SF-36) Health Survey and also by disease-specific instruments; in particular, the Parkinson's Disease Quality-of-Life Questionnaire (PDQL) and 39-Item Parkinson's Disease Questionnaire (PDQ-39). This article summarises the criteria whereby such instruments should be evaluated by potential users and describes in more detail the methods of developing and testing such disease-specific instruments for use in PD. There is a range of valid and feasible methods available for taking into account patients' views of PD outcomes. These will become important outcome measures in future clinical trials of treatment regimes.
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The Nottingham Health Profile (NHP) is a widely used measure of perceived health status. The aim of the present study was to adapt the NHP for use in Turkey and to test its psychometric properties. Following translation and testing for its face and content validity, 50 patients with osteoarthritis were interviewed on two occasions. Each interview included administration of the NHP and the Stanford Health Assessment Questionnaire (HAQ), a measure of functional disability. Test-retest reliability of the new version was satisfactory and comparable with other available language versions. As predicted, high correlations were found between the HAQ and the physical mobility, pain and energy level sections of the NHP and low correlations between the HAQ and emotional reactions, social isolation and sleep, confirming the construct validity of the NHP. It is concluded that the adaptation of the NHP into Turkish was successful but that additional studies are required to assess its suitability for use with other patient populations and its equivalence to other language versions of the measure.
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Gender symptom differences were studied in 948 subjects with Parkinson's disease (PD) using a questionnaire covering the most common symptoms associated with PD at debut (SP-1) and at present (SP-2). The symptoms most frequently reported by both genders were: tremor, fumblingness, writing problems, rigidity and fatigue. At SP-1 females reported neck-pain and low back pain more frequently than males. At SP-2 subjects reported an increased number of symptoms. The following symptoms were more frequent among males than females: writing difficulties, fumblingness, gait problems, speech problems, increased flow of saliva, lack of initiative. Sleep problems were common in both sexes with inability to turn in bed and calf muscle cramps in a high percentage. A majority of female subjects find their symptoms (e.g. depression) constantly distressing. Although depression is not one of primary reported symptoms (36%) attention is called for, due to the problem with compliance to treatment regimes. About 30% do not report having tremor and rigidity. This study indicates the usefulness of a symptom profile instrument capable of capturing the many symptoms involved in PD. Such an instrument could be used to detect apparent mistakes in medication and thereby increase the function and quality of life for the individual.
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To examine the change over time in health related quality of life (HRQL) in a community based cohort of patients with Parkinson's disease. One hundred and eleven patients were evaluated for HRQL in 1993 and then again in a follow up study 4 years later. The patients included in the study in 1993 were derived from a prevalence study of patients with Parkinson's disease in the county of Rogaland, Norway. The HRQL was measured by the Nottingham health profile (NHP). At both evaluations clinical and demographic variables were determined during semistructured interviews and by clinical examinations by a neurologist. During the 4 year follow up period there was a significant increase in NHP scores, reflecting a decreased HRQL, in the dimensions of physical mobility, emotional reactions, pain, and social isolation. In the same time period mean total NHP score increased from 120.0 (SD 102.6) to 176.0 (SD 119.4) (p<0.01). There were no clinical or demographic factors found in 1993 that identified patients at higher risk for developing decreased HRQL. Increased UPDRS score (unified Parkinson's disease rating scale) and Hoehn and Yahr stage during the 4 year study period correlated with increased NHP scores. Even though there was no increase in depressive symptoms or self reported insomnia, these symptoms, together with lower Schwab and England score, were the most important factors for a poor HRQL in 1997. Parkinson's disease has a substantial impact on HRQL. Despite modern care, we found a significantly increased distress during the 4 year follow up period. Increased parkinsonism, measured by UPDRS and Hoehn and Yahr stage, correlated with increased stress, not only in the dimension of physical mobility, but also in the areas of pain, social isolation, and emotional reactions. In addition to the clinical examination, HRQL scoring provides valuable information on the total health burden of Parkinson's disease in both cross sectional and longitudinal evaluations, and contributes to a more comprehensive picture of the total disease impact.