care giver burdan in parkinson

8/3/2019 Care Giver Burdan in Parkinson

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Caregiver Burden in Parkinsons Disease

Pablo Martnez-Martn, MD, PhD,1* Maria Joao Forjaz, PhD,1 Belen Frades-Payo, MSc,1Angels Bayes Rusinol, MD,2 Jose Manuel Fernandez-Garca, MD,3 Julian Benito-Leon, MD, PhD,4

Vctor Campos Arillo, MD,5 Miquel Aguilar Barbera, MD,6

Margarita Pondal Sordo, MD, PhD,7 and Mara Jose Catalan, MD8

1 Neuroepidemiology Unit, National Center for Epidemiology, Carlos III Institute of Public Health, Madrid2Parkinsons Disease Unit, Teknon Medical Center, Barcelona3Department of Neurology, Basurto General Hospital, Bilbao

4Department of Neurology, Mostoles General Hospital, Madrid5Department of Neurology, University Teaching Hospital, Malaga6Department of Neurology, Mutua de Terrassa Hospital, Barcelona7Department of Neurology, Severo Ochoa Hospital, Leganes, Madrid

8Unit of Movement Disorders, Department of Neurology, San Carlos University Teaching Hospital, Madrid, Spain

Abstract: Parkinsons disease (PD) is a neurodegenerativedisorder that imposes an important burden upon the patientscaregiver. This study aims at assessing caregiver burden (CB)and analyzing its relationship with sociodemographic, emo-tional, and functional factors, as well as health-related qualityof life (HRQoL). The following measures were applied to 80patients 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 wasfound to be a valid and reliable measure in the context of PD.

There was a significant association between CB and caregiversHRQoL (r 0.29 to 0.64). Mental aspects of caregiversHRQoL and burden were affected by disability and diseaseseverity. 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 andseverity), and HRQoL of patients and caregivers. This studyunderscores 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;Parkinsons 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-

givers 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.1

Impact of PD on patients and caregivers health-related

quality of life (HRQoL),2 and on CB3-7 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.

PATIENTS AND METHODS

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 journalss CME program. The CME formcan be found on page 1060 and is available online at http://www.movementdisorders.org/education/activities.html

*Correspondence to: P. Martnez Martn, Centro Nacional de Epi-demiologa, Instituto de Salud Carlos III, C/ Sinesio Delgado, 6,28029Madrid, Spain. E-mail: [email protected]

Received 31 October 2006; Accepted 2 November 2006Published online 19 January 2007 in Wiley InterScience (www.

interscience.wiley.com). DOI: 10.1002/mds.21355

Movement DisordersVol. 22, No. 7, 2007, pp. 924931 2007 Movement Disorder Society CME

924


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(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 criteria8 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 patients care or is directly af-

fected by the patients health problem. Absence of

stable caregiver and patient or caregivers inability to

complete self-assessment questionnaires, as judged by

the neurologist, were exclusion criteria.

Procedure

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.

Assessments

1. Neurological assessment: Hoehn and Yahr scale

(HY),9 Barthel Index (IB),10 Activities of Daily Liv-

ing subscale of the SCOPA-Motor scale (SMS-ADL),11,12 and Clinical Global Impression-Severity

scale (CGI-S).13

2. Caregiver self-assessment: socio-demographic and

patient-care questionnaire, Hospital Anxiety and De-

pression Scale (HADS),14 SF-36 questionnaire,15 Eu-

roQoL,16 and a CB interview (Zarit CB Inventory,

ZCBI).17

3. Patient self-assessment: HADS and EuroQoL.

The original HY scale9 is made up of 6 points of

increasing progression. The UPDRS18 included a modi-

fied-version HY with 8 stages, which is now commonly

used. The HY is universally used as a severity

indicator.19

The BI20 is a widely-used scale that provides a rapid

assessment of the patients functional state in 10 activi-

ties of daily living (ADL), through direct observation or

interview of patient or caregiver. It has excellent metric

properties,20,21 rating patients from 0 (dependent) to 100

(totally independent).

The SCOPA-Motor scale (SMS)11 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.12 The present

study took the SMS-ADL (7 items) as a specific measure

of disability.

The CGI-S represents the clinicians subjective assess-ment of global disease severity at a given point in time,13

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.22

The HADS is formed by 14 items, 7 measuring anx-

iety and 7 depression.14 The item scoring ranges from 0

(No problem) to 3 (Extreme problem).

The SF-36 is a generic measure of HRQoL15 that

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.23

The EuroQoL16,24 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

state).

The ZCBI17 is used to ascertain the distress experi-

enced by caregivers of elderly or disabled persons. It isformed by 22 items about the impact of the patients

disabilities on caregivers 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

CAREGIVER BURDEN IN PD 925

Movement Disorders, Vol. 22, No. 7, 2007


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higher perceived CB. By means of confirmatory factor

analysis, two subscales (personal strain and role strain),

have been obtained from the ZCBI.25 Although chiefly

used on caregivers of dementia patients, the ZCBI allows

for broader application including PD.4,26

Data Analysis

For the ZCBI, quality of data was analyzed, with a

limit of 90% of total computable scores being set as

acceptable.27 In addition, the following metric attributes

of the ZCBI were determined: floor and ceiling effects

(limit 15% for both)28; skewness (limits: 1 to 1)29;

scaling assumptions (total-item corrected correlation

0.40)30; internal consistency (Cronbachs alpha

0.70)31; convergent validity with other measures

(Spearman r 0.30)32; 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

coefficient).31,33

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 ZCBIs 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

0.300.59, and strong for r 0.60.

The differential effect of patients and caregivers

depression (HADS-Depression 11)34 on CB and care-

givers HRQoL was analyzed using the MannWhitney

test.

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 varimaxrotation, 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.

RESULTS

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 (MannWhitney 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.29 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

Cronbachs alpha was 0.93 and the standard error ofmeasurement 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 0.400.62); (2) the caregivers mood (r

0.540.65); and (3) the patients 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) ofcategorical variables

Caregiver Patient

n % n %

Sex

Male 17 21.25 52 65.00Female 62 77.50 28 35.00Marital status

Married 74 92.50 68 85.00Widowed/separated/divorced 5 6.25 12 15.00

EducationNo formal education 11 13.75 19 23.75Primary education 34 42.50 37 46.25Secondary education 26 32.50 22 27.50University education 8 10.00 2 2.50

ActivitySelf employed 15 18.75 7 8.75Retired 21 26.25 60 75.00Housework/other 44 55.00 13 16.25

RelationshipSpouse 61 76.25Children 15 18.75

Other 3 3.75Attention to patient

3 months 71 88.753 months 2 2.50Transitory 7 8.75

Proportion of caregivers dayDay and night 18 22.50Daytime 11 13.75Hours 27 33.75Less 22 27.50

Supervision due to dangerYes 39 48.75No 40 50.00

926 P. MARTI NEZ-MARTI N ET AL.



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moderate, 29.5 17.0; and severe, 43.0 16.7

(KruskalWallis, P 0.003).

Concerning the first working hypothesis, CB was sig-

nificantly associated with the proportion of the day de-

voted to caregiving (KruskalWallis, 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 0.460.53, 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 0.030.19) and mental components (r 0.230.38). 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 6.730.7; MannWhitney 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

ZCBI

Caregiver variablesCaregivers age 0.05No. 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

Patients age 0.24*Age at PD onset 0.24*PD duration 0.07Barthel 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 tocaregivers and patients

N Mean SD Minimum Maximum

CaregiverCaregivers age 76 61.3 13.2 30.0 85.0No. hours helping patient

with ADL 71 2.2 4.5 0.0 24.0No. hours helping with

instrumental tasks 72 3.5 5.6 0.0 24.0Hours invested in care

(less time for oneself) 56 3.9 5.3 0.0 24.0SF-36 physical function 80 71.7 24.2 15.0 100.0SF-36 role-physical 80 72.5 38.9 0.0 100.0SF-36 bodily pain 80 61.9 26.9 10.0 100.0SF-36 general health 80 58.4 22.7 10.0 100.0SF-36 vitality 80 55.1 23.6 0.0 100.0SF-36 social function 80 77.0 24.7 12.5 100.0SF-36 emotional function 80 70.4 40.4 0.0 100.0SF-36 mental health 80 58.9 23.8 12.0 100.0SF-36 physical

component 80 46.1 10.3 22.8 67.1SF-36 mental component 80 4 3.1 13.2 11.3 67.8ZCBI 72 26.5 18.7 0.0 69.0HADS-anxiety 79 7.1 4.7 0.0 18.0HADS-depression 79 6.1 4.1 0.0 15.0EQ-T 78 0.8 0.2 0.2 1.0EQ-VAS 79 69.9 17.4 30.0 100.0

PatientPatients age 80 69.4 11.4 42.0 87.0Age at PD onset 76 61.4 11.9 33.0 83.0PD duration 76 7.7 5.0 1.0 22.0Barthel Index 80 84.5 20.5 0.0 100.0SMS-ADL 80 8.1 4.0 1.0 21.0Hoehn and Yahr

(median) 79 (1.5) 1.5 5.0Clinical Global

Impression-Severityscale (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 20.0EQ-T 79 0.5 0.3 0.4 1.0EQ-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.




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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

11.127.4; MannWhitney, 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 13.1to 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; MannWhitney test, P

0.04; SMS-ADL, diff. 2.2; 95% CI 0.44.0; P

0.01) and more severe PD than did nondepressed patients

(CGI-S, diff. 0.62; 95% CI 0.141.10; 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 themultiple 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. Caregivers 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 patients mood and HRQoL (

0.29, P 0.002) and caregivers 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

mood.

DISCUSSION

According to Pasetti et al.,35 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

caregivers.

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.2,4,6 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.2,3,6 A relationship between disease

TABLE 4. Correlations between CB and caregivers HRQoL, and study variables

CB, ZCBI

Disability/severity (patients) HADS-depression

IB SMS-ADL HY Caregiver Patient

Caregivers HRQoLSF-36

SF-36 Physical function 0.36** 0.17 0.33** 0.05 0.25* 0.10SF-36 Role-physical 0.45** 0.24* 0.15 0.01 0.36** 0.16SF-36 Bodily pain 0.50** 0.14 0.20 0.23* 0.31** 0.21SF-36 General health 0.33** 0.01 0.04 0.02 0.29** 0.25SF-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** 0.11SF-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 0.14SF-36 Mental component 0.63** 0.38** 0.23* 0.28* 0.62** 0.29**

EuroQoLEQ-T 0.48** 0.19 0.20 0.16 0.56** 0.20EQ-VAS 0.37** 0.12 0.16 0.13 0.40** 0.20

Caregiver burdenZCBI 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-visualanalogue scale.




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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.26,36

Once again in line with previous studies, both in

PD5,6,36,37 and non-PD36,38,39 settings, the time devoted to

caring and strain linked to the caregivers 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.38,40

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 severity2,6,7,37,41 and dis-

ability2-4,6,7,37,41 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 CB3,5,41 and

caregivers psychosocial adaptation and HRQoL.2,6,37

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.2,3,6,7,42,43 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 moredisabled than were nondepressed patients, a fact that may

explainat least in partthe 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,clinicalaspects

Factor 2, caregiverspsychol. well-being

Factor 3, patientsmood and HRQoL

Factor 4, caregiversphysical and global

HRQoL

Factor 5,caregiving

hours

Hoehn and Hahr 0.89Barthel Index 0.85

Clinical global impression-severity scale 0.84SMS-ADL 0.79SF-36 mental component 0.87HADS-anxiety caregiver 0.84HADS-depression caregiver 0.84HADS-depression patient 0.84HADS-anxiety patient 0.78EQ-VAS patient 0.70EQ-T patient 0.70SF-36 physical component 0.91EQ-VAS caregiver 0.74EQ-T caregiver 0.67No. hours helping with instrumental tasks 0.92No. hours helping patient with ADL 0.86Explained 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.




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2. time devoted to caring and strain deriving from the

patients 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 byfunds from Instituto de Salud Carlos III (network of excellence

Red IRYSS G03/202) and a grant (to MJF) from the Ramon yCajal Research Fellowship Program sponsored by the SpanishMinistry of Education and Science.

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