Caregiver burden in Parkinson's disease

Article (PDF Available)inMovement Disorders 22(7):924-31; quiz 1060 · May 2007with486 Reads
DOI: 10.1002/mds.21355 · Source: PubMed
Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being.
Caregiver Burden in Parkinson’s Disease
Pablo Martı´nez-Martı´n, MD, PhD,
* Maria Joa˜o Forjaz, PhD,
Bele´n Frades-Payo, MSc,
Angels Baye´s Rusin˜ol, MD,
Jose´ Manuel Ferna´ndez-Garcı´a, MD,
Julia´n Benito-Leo´n, MD, PhD,
´ctor Campos Arillo, MD,
Miquel Aguilar Barbera´, MD,
Margarita Pondal Sordo, MD, PhD,
and Marı´a Jose´ Catala´n, MD
Neuroepidemiology Unit, National Center for Epidemiology, Carlos III Institute of Public Health, Madrid
Parkinson’s Disease Unit, Teknon Medical Center, Barcelona
Department of Neurology, Basurto General Hospital, Bilbao
Department of Neurology, Mo´stoles General Hospital, Madrid
Department of Neurology, University Teaching Hospital, Malaga
Department of Neurology, Mutua de Terrassa Hospital, Barcelona
Department of Neurology, Severo Ochoa Hospital, Legane´s, Madrid
Unit of Movement Disorders, Department of Neurology, San Carlos University Teaching Hospital, Madrid, Spain
Abstract: Parkinson’s disease (PD) is a neurodegenerative
disorder that imposes an important burden upon the patient’s
caregiver. This study aims at assessing caregiver burden (CB)
and analyzing its relationship with sociodemographic, emo-
tional, and functional factors, as well as health-related quality
of life (HRQoL). The following measures were applied to 80
patients with PD: the Hospital Anxiety and Depression Scale
(HADS); the EuroQoL (for HRQoL); and PD-specific mea-
sures (Hoehn and Yahr staging and SCOPA-Motor ADL sub-
scale). Patients’ main caregivers completed the HADS, SF-36,
EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was
found to be a valid and reliable measure in the context of PD.
There was a significant association between CB and caregivers’
HRQoL (r ⫽⫺0.29 to 0.64). Mental aspects of caregivers’
HRQoL and burden were affected by disability and disease
severity. The presence of caregivers’ depression had a signifi-
cant negative effect on both CB and HRQoL. The main pre-
dictors of CB were caregivers’ psychological well-being, pa-
tients’ mood and clinical aspects of PD (disability and
severity), and HRQoL of patients and caregivers. This study
underscores the need to consider the impact of PD on caregiv-
ers’ well-being. © 2007 Movement Disorder Society
Key words: caregiver burden; health-related quality of life;
Parkinson’s disease; Zarit caregiver burden inventory.
Neurodegenerative diseases have major consequences
for society, owing to the high prevalence and resources
needed to take suitable care of such neurodegenerative
patients. The role of the main caregiver, usually a family
member, is crucial in these circumstances. This role
becomes progressively more important with disease pro-
gression, until caring for the patient becomes the care-
giver’s main or almost only activity.
Taking care of a patient is an extremely demanding
task, resulting in caregiver burden (CB). CB refers to the
realm of physical, mental, and socio-economic problems
experienced by the caregivers of chronic patients.
Impact of PD on patients’ and caregivers’ health-related
quality of life (HRQoL),
and on CB
are aspects of PD
that have come in for growing interest in recent years.
This study sought to assess the burden and HRQoL of
caregivers of PD patients and to determine the relation-
ship between this and socio-demographic, patient-care,
functional, and emotional factors.
Working Hypotheses
(1) CB is positively associated with level of patient
care (hours of caregiving, supervision to prevent danger);
This article is part of the journals’s CME program. The CME form
can be found on page 1060 and is available online at http://www.
*Correspondence to: P. Martı´nez Martı´n, Centro Nacional de Epi-
demiologı´a, Instituto de Salud Carlos III, C/ Sinesio Delgado, 6,
28029 –Madrid, Spain. E-mail:
Received 31 October 2006; Accepted 2 November 2006
Published online 19 January 2007 in Wiley InterScience (www. DOI: 10.1002/mds.21355
Movement Disorders
Vol. 22, No. 7, 2007, pp. 924 –931
© 2007 Movement Disorder Society
(2) there is a relationship between CB and caregivers’
HRQoL; (3) CB and caregivers’ HRQoL are signifi-
cantly associated with patients’ disability and PD sever-
ity; (4) the presence of caregivers’ depression is more
closely linked to their HRQoL than to their CB; and (5)
the presence of patients’ depression has an impact upon
CB and caregivers’ HRQoL.
Study Design
Cross-sectional, multicenter study with a one point-in-
time assessment.
Patients and Caregivers
Eighty hospital out-patients and their respective care-
givers participated in the study. Inclusion criteria were as
follows: (1) patient diagnosed with PD as per interna-
tional criteria
by expert neurologist specializing in
movement disorders; (2) presence of stable main care-
giver, defined as “any person who, without being a
professional or belonging to a social support network,
usually lives with the patient and, in some way, is di-
rectly implicated in the patient’s care or is directly af-
fected by the patient’s health problem.” Absence of
stable caregiver and patient or caregiver’s inability to
complete self-assessment questionnaires, as judged by
the neurologist, were exclusion criteria.
Patients and caregivers were consecutively selected
from seven medical centers in four Spanish provinces.
During a regular medical visit, the neurologist performed
a standard evaluation. Once the study had been ex-
plained, patients/caregivers gave their informed consent
to participate, and independently performed the relevant
self-assessments within a maximum period of two weeks
after the medical evaluation.
1. Neurological assessment: Hoehn and Yahr scale
Barthel Index (IB),
Activities of Daily Liv-
ing subscale of the SCOPA-Motor scale (SMS-
and Clinical Global Impression-Severity
scale (CGI-S).
2. Caregiver self-assessment: socio-demographic and
patient-care questionnaire, Hospital Anxiety and De-
pression Scale (HADS),
SF-36 questionnaire,
and a CB interview (Zarit CB Inventory,
3. Patient self-assessment: HADS and EuroQoL.
The original HY scale
is made up of 6 points of
increasing progression. The UPDRS
included a modi-
fied-version HY with 8 stages, which is now commonly
used. The HY is universally used as a severity
The BI
is a widely-used scale that provides a rapid
assessment of the patient’s functional state in 10 activi-
ties of daily living (ADL), through direct observation or
interview of patient or caregiver. It has excellent metric
rating patients from 0 (dependent) to 100
(totally independent).
The SCOPA-Motor scale (SMS)
is composed of 3
sections, namely, Motor examination, ADL, and Motor
complications. The scoring system ranges from 0 (Nor-
mal) to 3 (Severe). It has satisfactory metric character-
istics and it has been validated in Spain.
The present
study took the SMS-ADL (7 items) as a specific measure
of disability.
The CGI-S represents the clinician’s subjective assess-
ment of global disease severity at a given point in time,
on a scale from 1 (Normal) to 7 (Extremely severe). This
information is considered to be valid, reliable, and suit-
able for any kind of patient.
The HADS is formed by 14 items, 7 measuring anx-
iety and 7 depression.
The item scoring ranges from 0
(No problem) to 3 (Extreme problem).
The SF-36 is a generic measure of HRQoL
comprises 36 items grouped into 8 dimensions. Each
domain yields a score from 0 (worse health state) to 100
(best health state). Two summary scores, the so-called
physical and mental components, are also generated.
The EuroQoL
is a preference-based HRQoL mea-
sure. It includes a descriptive part, consisting of 5 items
scored from 1 (no problems or symptoms) to 3 (serious
problems or symptoms). Each score profile can then be
converted into a value (EQ-Tariff), ranging from 0
(death) to 1 (perfect health state), albeit can adopt neg-
ative values for some health states considered worse than
death. It also includes a Visual Analogue Scale (EQ-
VAS) to assess current health state (from 0 worse
imaginable health state to 100 best imaginable health
is used to ascertain the distress experi-
enced by caregivers of elderly or disabled persons. It is
formed by 22 items about the impact of the patient’s
disabilities on caregiver’s physical and emotional health,
as well as its repercussions on social and financial as-
pects. For each item, caregivers have to indicate how
often they have felt the suggested feeling or perception,
from never (score 0) to nearly always (score 4). The
ZCBI is scored by summing the responses of the indi-
vidual items (range: 0 88). A higher score indicates
Movement Disorders, Vol. 22, No. 7, 2007
higher perceived CB. By means of confirmatory factor
analysis, two subscales (personal strain and role strain),
have been obtained from the ZCBI.
Although chiefly
used on caregivers of dementia patients, the ZCBI allows
for broader application including PD.
Data Analysis
For the ZCBI, quality of data was analyzed, with a
limit of 90% of total computable scores being set as
In addition, the following metric attributes
of the ZCBI were determined: floor and ceiling effects
(limit 15% for both)
; skewness (limits: 1to1)
scaling assumptions (total-item corrected correlation
; internal consistency (Cronbach’s alpha
; convergent validity with other measures
(Spearman r 0.30)
; discriminative validity (magni-
tude of difference and P value), taking into account PD
severity according to HY level (1 to 2.5 mild; 3
moderate; and 4-5 severe); and precision (standard
error of measurement, using alpha as the reliability
The CB and level of patient care relationship was
determined using the Spearman rank correlation coeffi-
cient. The same analysis was used to explore the rela-
tionship between CB and caregivers’ HRQoL, by deter-
mining the ZCBI’s association with the SF-36 and
EuroQoL parameters. The association between CB and
caregivers’ HRQoL, on the one hand, and patients’ dis-
ability and severity of PD, on the other, was determined
by calculating the correlation between the ZCBI, SF-36,
and caregivers’ EuroQoL, and the patients’ disability
(BI, SMS-ADL) and severity (HY, CGI-S) scales. The
strength of the association was deemed weak for a cor-
relation coefficient value of r 0.30, moderate for r
0.30 0.59, and strong for r 0.60.
The differential effect of patients’ and caregivers’
depression (HADS-Depression 11)
on CB and care-
givers’ HRQoL was analyzed using the Mann–Whitney
Owing to the high number of variables that could be
used as potential predictors of CB, and to collinearity
problems, an exploratory factor analysis was performed
using the principal-components method with varimax
rotation, so as to allow the variables to be grouped. The
resulting factors were then used as independent variables
of CB in a step-wise multiple regression.
Tables 1 and 2 presents the descriptive statistics for
the study variables and measures. The distribution of the
patients by HY stage was as follows: stage 1.5, 5 pa-
tients; stage 2, 25 patients; stage 2.5, 19 patients; stage 3,
20 patients; stage 4, 8 patients; and stage 5, 2 patients.
Table 2 includes some variables common to both
patients and caregivers: patients were significantly older
and registered a higher depression and worse HRQoL
than their respective caregivers (Mann–Whitney test; all,
P 0.001).
ZCBI data-quality was acceptable, with 90.0% com-
putable scores. Floor and ceiling effects (both 1.3%) and
skewness (0.67) all proved satisfactory.
Item-total cor-
rected correlation coefficients ranged from 0.31 to 0.78.
Items 1, 4, and 20 yielded correlation coefficients below
criteria (r 0.38, 0.32, and 0.34, respectively). ZCBI
Cronbach’s alpha was 0.93 and the standard error of
measurement was 4.95 (1/3 SD).
Relative to convergent construct validity (Table 3),
there were moderate-to-high correlation between the
ZCBI and 3 groups of variables: (1) number of caregiv-
ing hours (r 0.40 0.62); (2) the caregiver’s mood (r
0.54 0.65); and (3) the patient’s clinical variables (r
0.46 0.56). The ZCBI registered significantly higher
scores as PD progressed, namely: mild, 21.9 17.7;
TABLE 1. Descriptives (frequency and percentages) of
categorical variables
Caregiver Patient
Male 17 21.25 52 65.00
Female 62 77.50 28 35.00
Marital status
Married 74 92.50 68 85.00
Widowed/separated/divorced 5 6.25 12 15.00
No formal education 11 13.75 19 23.75
Primary education 34 42.50 37 46.25
Secondary education 26 32.50 22 27.50
University education 8 10.00 2 2.50
Self employed 15 18.75 7 8.75
Retired 21 26.25 60 75.00
Housework/other 44 55.00 13 16.25
Spouse 61 76.25
Children 15 18.75
Other 3 3.75
Attention to patient
3 months 71 88.75
3 months 2 2.50
Transitory 7 8.75
Proportion of caregiver’s day
Day and night 18 22.50
Daytime 11 13.75
Hours 27 33.75
Less 22 27.50
Supervision due to danger
Yes 39 48.75
No 40 50.00
926 P. MARTI
Movement Disorders, Vol. 22, No. 7, 2007
moderate, 29.5 17.0; and severe, 43.0 16.7
(Kruskal–Wallis, P 0.003).
Concerning the first working hypothesis, CB was sig-
nificantly associated with the proportion of the day de-
voted to caregiving (Kruskal–Wallis, P 0.004) and the
need for supervision due to potential danger (Mann–
Whitney test, 37.3 17.2 vs. 18.3 15.6, P 0.0001).
Relative to the second working hypothesis, the ZCBI
showed high correlations with mental HRQoL variables,
and low-to-moderate correlations with SF-36 physical
HRQoL (Table 4). Correlations between the caregivers’
EuroQoL and ZCBI were moderate (r ⫽⫺0.33 to
0.49, P 0.01).
As regards the third hypothesis, disability (BI and
SMS-ADL) and PD severity (HY) correlated moderately
with CB (ZCBI) (r 0.46 0.53, P 0.01) (Table 4).
The SF-36 dimensions correlated weakly to moderately
with disability/severity measures. Similar correlations
were registered between these measures and SF-36 phys-
ical (r 0.03– 0.19) and mental components (r 0.23–
0.38). Correlations between patient disability/severity
measures and caregivers’ EuroQoL proved to be low and
statistically nonsignificant.
Table 4 also shows the correlation coefficients be-
tween caregivers’ depression and their HRQoL and CB
(hypothesis four). SF-36 Physical components, as well as
their dimensions, showed low correlations with HADS-
Depression (r ⫽⫺0.14 to 0.36). In contrast, SF-36
mental measures yielded moderate-to-high correlations
(r ⫽⫺0.44 to 0.68). Attention should be drawn to the
high correlations between caregivers’ depression and
two SF-36 measures, namely, Mental health (r ⫽⫺0.68,
P 0.01) and Mental component (r ⫽⫺0.62, P 0.01).
Correlations were moderate (r ⫽⫺0.40 to 0.56, P
0.01) between caregivers’ HADS-Depression and Euro-
QoL measures, as they were with the ZCBI (r 0.54,
P 0.01).
Depressed caregivers (n 12) registered significantly
higher CB than did nondepressed caregivers (n 67)
(diff. 18.7; 95% CI 6.7–30.7; Mann–Whitney test,
P 0.0041), worse perceived health status (EQ-VAS:
diff. ⫽⫺16.2; 95% CI ⫽⫺26.2 to 5.8; P 0.0056),
and worse HRQoL in all measures (for instance, SF-36
mental component: diff. ⫽⫺18.4; 95% CI ⫽⫺25.6 to
11.2; P 0.0001), except SF-36 bodily pain, SF-36
physical component, and EQ-tariff.
TABLE 3. Convergent validity: correlations between CB
(ZCBI) and other related variables
Caregiver variables
Caregiver’s age 0.05
No. hours of helping patient with ADL 0.55*
No. hours helping with instrumental tasks 0.40*
Hours invested in care (less time for oneself) 0.62*
HADS-anxiety 0.65*
HADS-depression 0.54*
Patient variables
Patient’s age 0.24*
Age at PD onset 0.24*
PD duration 0.07
Barthel index 0.52*
SMS-ADL 0.53*
Hoehn and Yahr 0.46*
Clinical global impression-severity scale 0.56*
Spearman rank correlation coefficients. *P 0.05.
ZCBI, Zarit caregiver burden inventory; SMS-ADL, SCOPA motor-
activities of daily living; EQ-T, EuroQoL-tariff; EQ-VAS, EuroQoL-
visual analogue scale.
TABLE 2. Descriptives of continuous variables related to
caregivers and patients
N Mean SD Minimum Maximum
Caregiver’s age 76 61.3 13.2 30.0 85.0
No. hours helping patient
with ADL 71 2.2 4.5 0.0 24.0
No. hours helping with
instrumental tasks 72 3.5 5.6 0.0 24.0
Hours invested in care
(less time for oneself) 56 3.9 5.3 0.0 24.0
SF-36 physical function 80 71.7 24.2 15.0 100.0
SF-36 role-physical 80 72.5 38.9 0.0 100.0
SF-36 bodily pain 80 61.9 26.9 10.0 100.0
SF-36 general health 80 58.4 22.7 10.0 100.0
SF-36 vitality 80 55.1 23.6 0.0 100.0
SF-36 social function 80 77.0 24.7 12.5 100.0
SF-36 emotional function 80 70.4 40.4 0.0 100.0
SF-36 mental health 80 58.9 23.8 12.0 100.0
SF-36 physical
component 80 46.1 10.3 22.8 67.1
SF-36 mental component 80 43.1 13.2 11.3 67.8
ZCBI 72 26.5 18.7 0.0 69.0
HADS-anxiety 79 7.1 4.7 0.0 18.0
HADS-depression 79 6.1 4.1 0.0 15.0
EQ-T 78 0.8 0.2 0.2 1.0
EQ-VAS 79 69.9 17.4 30.0 100.0
Patient’s age 80 69.4 11.4 42.0 87.0
Age at PD onset 76 61.4 11.9 33.0 83.0
PD duration 76 7.7 5.0 1.0 22.0
Barthel Index 80 84.5 20.5 0.0 100.0
SMS-ADL 80 8.1 4.0 1.0 21.0
Hoehn and Yahr
(median) 79 (1.5) 1.5 5.0
Clinical Global
scale (median) 79 (2.0) 2.0 7.0
HADS-anxiety 80 8.2 4.4 0.0 20.0
HADS-depression 80 8.6 4.6 0.0 20.0
EQ-T 79 0.5 0.3 0.4 1.0
EQ-VAS 78 60.0 19.5 10.0 100.0
ZCBI, Zarit caregiver burden inventory; SMS-ADL, SCOPA motor-
activities of daily living; EQ-T, EuroQoL-tariff; EQ-VAS, EuroQoL-
visual analogue scale.
Movement Disorders, Vol. 22, No. 7, 2007
In the case of the fifth working hypothesis, a moderate
correlation of patients’ HADS-Depression with CB (r
0.50; P 0.01) and a low correlation with caregivers’
HRQoL (r ⫽⫺0.10 to 0.35) was found (Table 4).
CB was higher for depressed (n 28) than for non-
depressed patients (n 52) (diff. 19.2; 95% CI
11.1–27.4; Mann–Whitney, P 0.0001). Furthermore,
caregivers of depressed patients also registered signifi-
cantly worse HRQoL in the following SF-36 measures,
viz., mental component (diff. ⫽⫺7.1; 95% CI ⫽⫺13.1
to 1.1; P 0.02), vitality (diff. ⫽⫺11.4; 95% CI
22.2 to 0.7; P 0.03), and social function (diff.
18.9; 95% CI ⫽⫺29.7 to 8.1; P 0.002).
Depressed patients displayed worse disability (BI, diff.
9.7; 95% CI ⫽⫺19.1 to 0.3; Mann–Whitney test, P
0.04; SMS-ADL, diff. 2.2; 95% CI 0.4 4.0; P
0.01) and more severe PD than did nondepressed patients
(CGI-S, diff. 0.62; 95% CI 0.14 –1.10; P 0.02).
Even when disability was statistically controlled for (SMS-
ADL), depressed patients generated a higher CB and pre-
sented a worse social function than did their nondepressed
counterparts (ANCOVA, P 0.001).
Table 5 reports the factor analysis results used in the
multiple regression model of CB. The variable “hours in-
vested in care (less time for oneself)” was excluded from
this analysis, because of the high proportion of missing data
(30.9%). The factor analysis suggested the presence of five
factors that accounted for 80% of the variance.
The contribution of these five factors to the CB was
analyzed in a multiple regression model, which proved to
be statistically significant [F(4) 18.61, P 0.001],
explaining 55.7% of the variance. Caregiver’s psycho-
logical well-being (␤⫽0.52, P 0.001) and PD clinical
aspects (␤⫽0.37, P 0.001) were the most important
predictors, followed by patient’s mood and HRQoL (␤⫽
0.29, P 0.002) and caregiver’s physical and global
HRQoL (␤⫽⫺0.27, P 0.007). The factor caregiving
hours was not significantly associated with CB. In brief,
CB was influenced by caregivers’ mood and HRQoL, as
well as by the patients’ disability, PD severity, and
According to Pasetti et al.,
relatively few studies
have addressed caregiving-related problems in PD, rea-
son enough for conducting an in-depth study into knowl-
edge about the burden and HRQoL of PD-patient
To our knowledge, there was no previous experience
with the application of the Spanish version ZCBI in a PD
context, and so the first step was to explore some basic
metric attributes of the scale in this setting. Results
showed the ZCBI to be both feasible and possessing
satisfactory acceptability and internal consistency. Ac-
cordingly, the ZCBI was considered a valid measure for
evaluating CB in PD patients.
In line with previous studies, CB was unrelated to care-
givers’ age and showed a tendency to be higher in female
than in male caregivers.
In contrast, we failed to observe
a significant relationship with disease duration, a factor
displaying low-to-moderate association with CB and psy-
chosocial disadaptation.
A relationship between disease
TABLE 4. Correlations between CB and caregiver’s HRQoL, and study variables
Disability/severity (patients) HADS-depression
IB SMS-ADL HY Caregiver Patient
Caregiver’s HRQoL
SF-36 Physical function 0.36** 0.17 0.33** 0.05 0.25* 0.10
SF-36 Role-physical 0.45** 0.24* 0.15 0.01 0.36** 0.16
SF-36 Bodily pain 0.50** 0.14 0.20 0.23* 0.31** 0.21
SF-36 General health 0.33** 0.01 0.04 0.02 0.29** 0.25
SF-36 Vitality 0.64** 0.34** 0.34** 0.41** 0.55** 0.29**
SF-36 Social function 0.61** 0.31** 0.25* 0.18 0.44** 0.35**
SF-36 Emotional function 0.52** 0.26* 0.17 0.08 0.48** 0.11
SF-36 Mental health 0.61** 0.37** 0.25* 0.32** 0.68** 0.33**
SF-36 Physical component 0.29** 0.03 0.19 0.01 0.14 0.14
SF-36 Mental component 0.63** 0.38** 0.23* 0.28* 0.62** 0.29**
EQ-T 0.48** 0.19 0.20 0.16 0.56** 0.20
EQ-VAS 0.37** 0.12 0.16 0.13 0.40** 0.20
Caregiver burden
ZCBI 0.52** 0.53** 0.46** 0.54** 0.50**
Spearman rank correlation coefficients. *P 0.05; **P 0.01.
ZCBI, Zarit caregiver burden inventory; SMS-ADL, SCOPA motor-activities of daily living; EQ-T, EuroQoL-tariff; EQ-VAS, EuroQoL-visual
analogue scale.
928 P. MARTI
Movement Disorders, Vol. 22, No. 7, 2007
duration and CB might well be expected, since PD is
progressive. However, earlier studies applied measures
other than the ZCBI, and many complex factors may also
intervene to modify the theoretically linear relationship
between disease duration and CB.
Once again in line with previous studies, both in
and non-PD
settings, the time devoted to
caring and strain linked to the caregiver’s role were
significantly associated with CB. The first working hy-
pothesis of the study was thus confirmed.
As postulated, a significant, albeit moderate, associa-
tion was found between CB and both global and physical
HRQoL. The correlation between CB and SF-36 mental
components was high, however. There is some informa-
tion linking CB and HRQoL, but in scenarios other than
PD and using different types of measures.
In the present study, patient-related variables measur-
ing disability and disease severity displayed similar re-
lationships vis-a`-vis CB and HRQoL. Previous studies
reported the influence of global severity
and dis-
on CB and HRQoL. Our results point to
a preferential impact of the earlier mentioned variables
on CB and mental aspects of HRQoL.
In PD, caregivers’ depression impacts CB
caregivers’ psychosocial adaptation and HRQoL.
Our results showed the highest association to be between
depression and SF-36 mentally-related aspects, while the
physical component and dimensions registered low-to-
moderate correlation coefficients. The effect of caregiv-
ers’ depression on their EuroQoL global index, was
similar to its effect on CB. Moreover, depressed care-
givers reported more CB and worse HRQoL than non-
depressed carers.
Several studies have reported the association between
CB and strain and patients’ depression.
In the
present study, patients’ depression was moderately asso-
ciated with CB level, but its correlation with caregivers’
HRQoL was weak. Nonetheless, significant differences,
both in burden and HRQoL, were found between care-
givers of patients with and without depression. Never-
theless, patients with depression were significantly more
disabled than were nondepressed patients, a fact that may
explain—at least in part—the apparent influence of pa-
tients’ depression on CB and well-being.
The most important predictors of CB were the psy-
chological well-being of the caregivers themselves, clin-
ical aspects of disease, patients’ mood, and the HRQoL
of patients and caregivers alike. It is essential that these
aspects be borne in mind when it comes to designing
interventions to lessen CB.
Study limitations were mainly related to sample size
and distribution, even though all stages of PD disease
were represented. The EuroQoL was applied to carers
and patients to allow for direct comparison. PD-specific
HRQoL measures were not used, in order to avoid ad-
ministrative and respondent burden. This strategy, how-
ever, probably prevented us from obtaining more specific
data on patients’ HRQoL.
The main conclusions of this study are as follows:
1. the ZCBI is a valid measure for measurement of CB
in a PD setting;
TABLE 5. Exploratory factor analysis with varimax rotation
Factor 1,
Factor 2, caregiver’s
psychol. well-being
Factor 3, patient’s
mood and HRQoL
Factor 4, caregiver’s
physical and global
Factor 5,
Hoehn and Hahr 0.89
Barthel Index 0.85
Clinical global impression-severity scale 0.84
SMS-ADL 0.79
SF-36 mental component 0.87
HADS-anxiety caregiver 0.84
HADS-depression caregiver 0.84
HADS-depression patient 0.84
HADS-anxiety patient 0.78
EQ-VAS patient 0.70
EQ-T patient 0.70
SF-36 physical component 0.91
EQ-VAS caregiver 0.74
EQ-T caregiver 0.67
No. hours helping with instrumental tasks 0.92
No. hours helping patient with ADL 0.86
Explained variance 21.13 16.67 16.56 13.05 12.49
Only loadings 0.50 are shown. N 62.
SMS-ADL, SCOPA motor-activities of daily living; EQ-T, EuroQoL-tariff; EQ-VAS, EuroQoL-visual analogue scale.
Movement Disorders, Vol. 22, No. 7, 2007
2. time devoted to caring and strain deriving from the
patient’s condition influences CB;
3. there is an association between CB and HRQoL;
4. disability and disease severity have an impact on CB
and mental aspects of HRQoL;
5. caregivers’ depression is associated with higher CB
and lower HRQoL;
6. patients’ depression was moderately associated with
CB and weakly associated with caregivers’ HRQoL,
yet severity of illness and disability were significantly
higher among depressed patients. Patients’ depression
may thus be reflecting the indirect influence of these
factors on caregivers; and
7. the psychological well-being of caregivers, clinical
aspects of disease, patients’ mood, and HRQoL of
both patients and caregivers, are predictors of CB.
Acknowledgments: This study was partially supported by
funds from Instituto de Salud Carlos III (network of excellence
Red IRYSS G03/202) and a grant (to MJF) from the Ramon y
Cajal Research Fellowship Program sponsored by the Spanish
Ministry of Education and Science.
1. Zarit SH, Todd PA, Zarit JM. Subjective burden of husbands and
wives as caregivers: a longitudinal study. Gerontologist 1986;26:
260 –266.
2. Martinez-Martin P, Benito-Leon J, Alonso F, et al. Quality of life
of caregivers in Parkinson’s disease. Qual Life Res 2005;14:463–
3. Caap-Ahlgren M, Dehlin O. Factors of importance to the caregiver
burden experienced by family caregivers of Parkinson’s disease
patients. Aging Clin Exp Res 2002;14:371–377.
4. Edwards NE, Scheetz PS. Predictors of burden for caregivers of
patients with Parkinson’s disease. J Neurosci Nurs 2002;34:184
5. Happe S, Berger K. The association between caregiver burden and
sleep disturbances in partners of patients with Parkinson’s disease.
Age Ageing 2002;31:349 –354.
6. Schrag A, Hovris A, Morley D, Quinn N, Jahanshahi M. Care-
giver-burden in Parkinson’s disease is closely associated with
psychiatric symptoms, falls, and disability. Parkinsonism Relat
Disord 2006;12:35– 41.
7. Whetten-Goldstein K, Sloan F, Kulas E, Cutson T, Schenkman M.
The burden of Parkinson’s disease on society, family, and the
individual. J Am Geriatr Soc 1997;45:844 849.
8. Hughes AJ, Daniel SE, Kilford L, Lees AJ. Accuracy of clinical
diagnosis of idiopathic Parkinson’s disease: a clinico-pathological
study of 100 cases. J Neurol Neurosurg Psychiatry 1992;55:181–
9. Hoehn MM, Yahr MD. Parkinsonism: onset, progression and mor-
tality. Neurology 1967;17:427– 442.
10. Mahoney F, Barthel D. Functional evaluation: the Barthel index.
Md State Med J 1965;14:61– 65.
11. Marinus J, Visser M, Stiggelbout AM, et al. A short scale for the
assessment of motor impairments and disabilities in Parkinson’s
disease: the SPES/SCOPA. J Neurol Neurosurg Psychiatry 2004;
75:388 –395.
12. Martinez-Martin P, Benito-Leon J, Burguera JA, et al. The
SCOPA-Motor Scale for assessment of Parkinson’s disease is a
consistent and valid measure. J Clin Epidemiol 2005;58:674 679.
13. Guy W. Early Clinical Drug Evaluation Unit (ECDEU) assessment
manual for psychopharmacology (revised). Bethesda, MD: Na-
tional Institute of Mental Health; 1976. p 217–222.
14. Zigmond AS, Snaith RP. The hospital anxiety and depression
scale. Acta Psychiatr Scand 1983;67:361–370.
15. Ware JE, Jr, Sherbourne CD. The MOS 36-item short-form health
survey (SF-36). I. Conceptual framework and item selection. Med
Care 1992;30:473– 483.
16. EuroQol Group. EuroQol–a new facility for the measurement of
health-related quality of life. The EuroQol Group. Health Policy
1990;16:199 –208.
17. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired
elderly: correlates of feelings of burden. Gerontologist 1980;20:
649 655.
18. Fahn S, Elton R, Members of the UPDRS Development Commit-
tee. Unified Parkinson’s disease rating scale. In: Fahn S, Marsden
C, Calne D, Goldstein M, editors. Recent Developments in Par-
kinson’s Disease, Vol. 2. Florham Park, NJ: Macmillan Health
Care; 1987. p 153–164.
19. Goetz CG, Poewe W, Rascol O, et al. Movement Disorder Society
Task Force report on the Hoehn and Yahr staging scale: status and
recommendations. Mov Disord 2004;19:1020 –1028.
20. Wade DT, Collin C. The Barthel ADL Index: a standard measure
of physical disability? Int Disabil Stud 1988;10:64 67.
21. Baztan JJ, Pe´rez de Molino J, Alarco´n T, San Cristo´bal E, Man-
zarbeitia I. Indice de Barthel: instrumento va´lido para la valoracio´n
funcional de pacientes con enfermedad cerebrovascular. Rev Esp
Geriatr Gerontol 1993;28:32– 40.
22. Bech P. Rating Scales for Psychopathology, Health Status, and
Quality of Life. Berlin: Springer–Verlag; 1993.
23. MOS. Puntuacio´n del Cuestionario de Salud SF-36. Versio´n es-
pan˜ola (Espan˜a). Boston, MA: Medical Outcomes Trust; 1995.
24. Badia X, Roset M, Montserrat S, Herdman M, Segura A. [The
Spanish version of EuroQol: a description and its applications.
European Quality of Life scale]. Med Clin (Barc) 1999;112(Suppl
1):79 85.
25. Whitlatch CJ, Zarit SH, von Eye A. Efficacy of interventions with
caregivers: a reanalysis. Gerontologist 1991;31:9 –18.
26. Secker DL, Brown RG. Cognitive behavioural therapy (CBT) for
carers of patients with Parkinson’s disease: a preliminary randomised
controlled trial. J Neurol Neurosurg Psychiatry 2005;76:491– 497.
27. WHOQOL Group. The World Health Organization quality of life
assessment (WHOQOL): development and general psychometric
properties. Soc Sci Med 1998;46:1569 –1585.
28. McHorney CA, Tarlov AR. Individual-patient monitoring in clin-
ical practice: are available health status surveys adequate? Qual
Life Res 1995;4:293–307.
29. Holmes W, Bix B, Shea J. SF-20 score and item distributions in a
human immunodeficiency virus-seropositive sample. Med Care
30. Campbell DT, Fiske DW. Convergent and discriminant validation by
the multitrait-multimethod matrix. Psychol Bull 1959;56:81–105.
31. Scientific Advisory Committee of the Medical Outcomes Trust.
Assessing health status and quality-of-life instruments: attributes
and review criteria. Qual Life Res 2002;11:193–205.
32. van der Linden FA, Kragt JJ, Klein M, van der Ploeg HM, Polman
CH, Uitdehaag BM. Psychometric evaluation of the multiple scle-
rosis impact scale (MSIS-29) for proxy use. J Neurol Neurosurg
Psychiatry 2005;76:1677–1681.
33. Beaton DE, Bombardier C, Katz JN, Wright JG. A taxonomy for
responsiveness. J Clin Epidemiol 2001;54:1204 –1217.
34. Bobes J, G-Portilla M, Bascara´n M, Sa´iz P, Bouson˜o M. Banco de
instrumentos ba´sicos para la pra´ctica de la psiquiatrı´a clı´nica.
Barcelona: Psiquiatrı´a Editores SL; 2002.
35. Pasetti C, Rossi FS, Fornara R, Picco D, Foglia C, Galli J. Care-
giving and Parkinson’s disease. Neurol Sci 2003;24:203–204.
36. Habermann B, Davis LL. Caring for family with Alzheimer’s
disease and Parkinson’s disease: needs, challenges and satisfaction.
J Gerontol Nurs 2005;31:49 –54.
930 P. MARTI
Movement Disorders, Vol. 22, No. 7, 2007
37. Glozman JM. Quality of life of caregivers. Neuropsychol Rev
38. Chappell NL, Reid RC. Burden and well-being among caregivers:
examining the distinction. Gerontologist 2002;42:772–780.
39. Yates ME, Tennstedt S, Chang BH. Contributors to and mediators
of psychological well-being for informal caregivers. J Gerontol B
Psychol Sci Soc Sci 1999;54:12–22.
40. Hughes SL, Giobbie-Hurder A, Weaver FM, Kubal JD, Henderson
W. Relationship between caregiver burden and health-related qual-
ity of life. Gerontologist 1999;39:534 –545.
41. Carter JH, Stewart BJ, Archbold PG, et al. Living with a person
who has Parkinson’s disease: the spouse’s perspective by stage of
disease. Parkinson’s Study Group. Mov Disord 1998;13:20 –28.
42. Thommessen B, Aarsland D, Braekhus A, Oksengaard AR, En-
gedal K, Laake K. The psychosocial burden on spouses of the
elderly with stroke, dementia and Parkinson’s disease. Int J Geriatr
Psychiatry 2002;17:78 84.
43. Aarsland D, Larsen JP, Karlsen K, Lim NG, Tandberg E. Mental
symptoms in Parkinson’s disease are important contributors to
caregiver distress. Int J Geriatr Psychiatry 1999;14:866 874.
Movement Disorders, Vol. 22, No. 7, 2007
    • "after the treatment, the partner still seems to feel the need to force a behavior considered right, but that is still perceived as obviously not in " harmony " with his/her fears. On the other hand, the patient feels more fulfilled in their his/her need for autonomy, and is perceived as " more able to do things " autonomously by the partner (Martinez-Martin et al., 2007). As for the dyadic satisfaction, which, as shown from the results, was greater for the partner than for the patient, we can say that this increase might be attributed to the partner's ability to feel freer to express his/her own difficulties and needs without experience a sense of guilt. "
    [Show abstract] [Hide abstract] ABSTRACT: This research wants to verify the effectiveness of couple's treatment, when a neurodegenerative disease affects one of the two partners. The disease affects not only the ailing individual, but also the dynamics within the couple. Fourteen patients affected by neurodegenerative diseases participated in an emotionally focused couple therapy (EFT) with their spouses. We collected a measure of the quality of life (SF-36) and relationship satisfaction (DAS) at the beginning and at the end of the treatment for both partners. The results show an improvement in quality of life and couple contentment, underlining the usefulness of such a psychotherapeutic intervention on the couple.
    Full-text · Article · Sep 2016
    • "Our results appear to be comparable to HRQOL reported in diseases with high functional impairment and high care need in adult patients. For example, EQ-5D utility measures were reported to average 0.5 and 0.8 for patients with Parkinson's disease and their caregivers, respectively (Martín et al. 2007). At the same time, a recent study of HRQOL in caregivers of children with autism found the mean utility score of female caregivers (representing the vast majority of caregivers in our study) to be 0.81 (Khanna et al. 2013), as compared to 0.72 in caregivers of children with FXS in our sample. "
    [Show abstract] [Hide abstract] ABSTRACT: Background Fragile X syndrome (FXS) is the main hereditary cause of intellectual disability. Although the associated burden appears to be considerable, to date no study has comprehensively assessed the cost incurred because of FXS, including its specific impact on health-related quality of life and the burden on caregivers using standardised quantitative tools. The aim of this article is to provide data in order to increase awareness of the repercussions of FXS on patients and caregivers as well as on the health and social care systems in France.MethodsA retrospective cross-sectional study was carried out on 145 patients recruited through Le Goëland X-Fragile and Mosaïques, the French FXS patient associations. Data on their demographic characteristics and resource use were obtained from an online questionnaire, and costs were estimated by a bottom-up approach. The EQ-5D health questionnaire was used to measure patients' and caregivers' health-related quality of life. Perceived burden of care was measured using the Zarit Caregiver Burden Interview. The Barthel index, a non-utility-based assessment, was used to measure patients' level of dependence.ResultsThe annual total direct cost of FXS was estimated at €25 800 per patient. The main contributors were informal care provided by the main caregiver (€10 500) and social services (€8400). Healthcare costs, estimated at €2700, represented only a minor share. Mean EQ-5D utility scores were 0.49 for patients and 0.75 for caregivers. The mean burden for caregivers as measured by the Zarit Caregiver Burden Interview was 39.9.Conclusions Fragile X syndrome requires significant resources that are mainly of a non-medical nature and are higher for children than for adults. Compared with related diseases, it constitutes a particularly high burden for caregivers. Using a bottom-up approach and a wide range of standardised measures, this study underscores the need for greater awareness of the burden of FXS as well as an assessment of new and existing interventions to address it.
    Full-text · Article · Sep 2015
    • "However, we found no correlation between baseline CBI, motor aspects of daily living, motor severity or motor fluctuations (as assessed by MDS-UPDRS Parts II–IV) in our study, suggesting that caregiver burden in PD patients undergoing DBS is not associated with motor function. Caregiver burden in PD has been consistently associated with the Hoehn and Yahr stage, a measure of disease severity [1, 2, 5, 10], but has been variably associated with the UPDRS motor score [10, 11]. Our cohort was uniform in terms of disease severity with all subjects at Hoehn and Yahr stage 2. Finally, the average caregiver burden score in our cohort was low, going from 17.8 ± 10.7 at baseline to 18.7 ± 13.1 at the 6 month evaluation. "
    [Show abstract] [Hide abstract] ABSTRACT: Background: Little is known about caregiver burden in Parkinson disease (PD) patients undergoing brain stimulation (DBS) surgery. Objective: The aim of this exploratory analysis was to evaluate whether caregiver burden improves after bilateral subthalamic nucleus (STN) DBS for PD patients and identify baseline factors associated with caregiver burden. Methods: We analyzed the motor, cognitive and behavioral data of 12 PD patients (9 men/3 women) who underwent bilateral STN DBS and whose caregivers completed the Caregiver Burden Inventory (CBI) both before and approximately 6 months after bilateral STN DBS. Results: Total CBI score did not change from baseline (17.8 ± 10.7) to the 6 month evaluation (18.7 ± 13.1), despite a 29% improvement in the MDS-UPDRS motor score (baseline 40.3 ± 12.1 compared to 28.7 ± 8.4 at 6 months, p = 0.01). Change in total CBI score did not correlate with change in MDS-UPDRS Parts I-IV or MoCA from baseline to 6 months. In post-hoc analyses looking at baseline characteristics that may correlate with caregiver burden, only the disinhibition subscore on the Frontal Systems Behavioral Scale correlated positively with the baseline total CBI score (ρ = 0.763, p = 0.004). Conclusion: Caregiver burden for PD patients (as measured by the CBI) does not change 6 months after bilateral STN DBS, despite significant improvement in motor function. Only baseline behavioral problems, specifically disinhibition, correlated with higher baseline caregiver burden. Clinicians may need to better counsel patients on expectations for caregiver burden after DBS.
    Full-text · Article · Jun 2014
Show more