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

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CME

Caregiver Burden in Parkinsons Disease

Pablo Martnez-Martn, MD, PhD,1* Maria Joao Forjaz, PhD,1 Belen Frades-Payo, MSc,1 Angels 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
Neuroepidemiology Unit, National Center for Epidemiology, Carlos III Institute of Public Health, Madrid 2 Parkinsons Disease Unit, Teknon Medical Center, Barcelona 3 Department of Neurology, Basurto General Hospital, Bilbao 4 Department of Neurology, Mostoles General Hospital, Madrid 5 Department of Neurology, University Teaching Hospital, Malaga 6 Department of Neurology, Mutua de Terrassa Hospital, Barcelona 7 Department of Neurology, Severo Ochoa Hospital, Leganes, Madrid 8 Unit of Movement Disorders, Department of Neurology, San Carlos University Teaching Hospital, Madrid, Spain
1

Abstract: Parkinsons disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patients 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-specic 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 signicant 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 signicant 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. 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 progression, until caring for the patient becomes the caregivers main or almost only activity.

This article is part of the journalss CME program. The CME form can 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, 28029 Madrid, Spain. E-mail: [email protected] Received 31 October 2006; Accepted 2 November 2006 Published online 19 January 2007 in Wiley InterScience (www. interscience.wiley.com). DOI: 10.1002/mds.21355

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 relationship 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);

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CAREGIVER BURDEN IN PD (2) there is a relationship between CB and caregivers HRQoL; (3) CB and caregivers HRQoL are signicantly associated with patients disability and PD severity; (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-intime assessment. Patients and Caregivers Eighty hospital out-patients and their respective caregivers participated in the study. Inclusion criteria were as follows: (1) patient diagnosed with PD as per international criteria8 by expert neurologist specializing in movement disorders; (2) presence of stable main caregiver, dened 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 directly implicated in the patients care or is directly affected 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 explained, 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

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1. Neurological assessment: Hoehn and Yahr scale (HY),9 Barthel Index (IB),10 Activities of Daily Living subscale of the SCOPA-Motor scale (SMSADL),11,12 and Clinical Global Impression-Severity scale (CGI-S).13 2. Caregiver self-assessment: socio-demographic and patient-care questionnaire, Hospital Anxiety and Depression Scale (HADS),14 SF-36 questionnaire,15 EuroQoL,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 modied-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 activities 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 (Normal) to 3 (Severe). It has satisfactory metric characteristics and it has been validated in Spain.12 The present study took the SMS-ADL (7 items) as a specic measure of disability. The CGI-S represents the clinicians subjective assessment 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 suitable for any kind of patient.22 The HADS is formed by 14 items, 7 measuring anxiety 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 measure. It includes a descriptive part, consisting of 5 items scored from 1 (no problems or symptoms) to 3 (serious problems or symptoms). Each score prole can then be converted into a value (EQ-Tariff), ranging from 0 (death) to 1 (perfect health state), albeit can adopt negative values for some health states considered worse than death. It also includes a Visual Analogue Scale (EQVAS) 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 experienced by caregivers of elderly or disabled persons. It is formed by 22 items about the impact of the patients disabilities on caregivers physical and emotional health, as well as its repercussions on social and nancial aspects. 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 individual items (range: 0 88). A higher score indicates

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TABLE 1. Descriptives (frequency and percentages) of categorical variables
Caregiver n Sex Male Female Marital status Married Widowed/separated/divorced Education No formal education Primary education Secondary education University education Activity Self employed Retired Housework/other Relationship Spouse Children Other Attention to patient 3 months 3 months Transitory Proportion of caregivers day Day and night Daytime Hours Less Supervision due to danger Yes No 17 62 74 5 11 34 26 8 15 21 44 61 15 3 71 2 7 18 11 27 22 39 40 % 21.25 77.50 92.50 6.25 13.75 42.50 32.50 10.00 18.75 26.25 55.00 76.25 18.75 3.75 88.75 2.50 8.75 22.50 13.75 33.75 27.50 48.75 50.00 n 52 28 68 12 19 37 22 2 7 60 13 Patient % 65.00 35.00 85.00 15.00 23.75 46.25 27.50 2.50 8.75 75.00 16.25

higher perceived CB. By means of conrmatory factor analysis, two subscales (personal strain and role strain), have been obtained from the ZCBI.25 Although chiey 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: oor 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 (magnitude 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 coefcient).31,33 The CB and level of patient care relationship was determined using the Spearman rank correlation coefcient. The same analysis was used to explore the relationship between CB and caregivers HRQoL, by determining the ZCBIs association with the SF-36 and EuroQoL parameters. The association between CB and caregivers HRQoL, on the one hand, and patients disability 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 correlation coefcient 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)34 on CB and caregivers 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 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. 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 signicantly 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% computable scores. Floor and ceiling effects (both 1.3%) and skewness (0.67) all proved satisfactory.29 Item-total corrected correlation coefcients ranged from 0.31 to 0.78. Items 1, 4, and 20 yielded correlation coefcients below criteria (r 0.38, 0.32, and 0.34, respectively). ZCBI Cronbachs 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 caregiving hours (r 0.40 0.62); (2) the caregivers mood (r 0.54 0.65); and (3) the patients clinical variables ( r 0.46 0.56). The ZCBI registered signicantly higher scores as PD progressed, namely: mild, 21.9 17.7;

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TABLE 2. Descriptives of continuous variables related to caregivers and patients
N Mean SD Minimum Maximum Caregiver Caregivers age No. hours helping patient with ADL No. hours helping with instrumental tasks Hours invested in care (less time for oneself) SF-36 physical function SF-36 role-physical SF-36 bodily pain SF-36 general health SF-36 vitality SF-36 social function SF-36 emotional function SF-36 mental health SF-36 physical component SF-36 mental component ZCBI HADS-anxiety HADS-depression EQ-T EQ-VAS Patient Patients age Age at PD onset PD duration Barthel Index SMS-ADL Hoehn and Yahr (median) Clinical Global Impression-Severity scale (median) HADS-anxiety HADS-depression EQ-T EQ-VAS 76 61.3 71 72 56 80 80 80 80 80 80 80 80 80 80 72 79 79 78 79 2.2 3.5 3.9 71.7 72.5 61.9 58.4 55.1 77.0 70.4 58.9 46.1 43.1 26.5 7.1 6.1 0.8 69.9 13.2 4.5 5.6 5.3 24.2 38.9 26.9 22.7 23.6 24.7 40.4 23.8 10.3 13.2 18.7 4.7 4.1 0.2 17.4 11.4 11.9 5.0 20.5 4.0 30.0 0.0 0.0 0.0 15.0 0.0 10.0 10.0 0.0 12.5 0.0 12.0 22.8 11.3 0.0 0.0 0.0 0.2 30.0 42.0 33.0 1.0 0.0 1.0 1.5 2.0 0.0 0.0 0.4 10.0 85.0 24.0 24.0 24.0 100.0 100.0 100.0 100.0 100.0 100.0 100.0 100.0 67.1 67.8 69.0 18.0 15.0 1.0 100.0 87.0 83.0 22.0 100.0 21.0 5.0 7.0 20.0 20.0 1.0 100.0

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80 69.4 76 61.4 76 7.7 80 84.5 80 8.1 79 (1.5)

79 (2.0) 80 8.2 4.4 80 8.6 4.6 79 0.5 0.3 78 60.0 19.5

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 physical ( 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 nonsignicant. Table 4 also shows the correlation coefcients between caregivers depression and their HRQoL and CB (hypothesis four). SF-36 Physical components, as well as their dimensions, showed low correlations with HADSDepression (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 EuroQoL measures, as they were with the ZCBI (r 0.54, P 0.01). Depressed caregivers (n 12) registered signicantly 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.

ZCBI, Zarit caregiver burden inventory; SMS-ADL, SCOPA motoractivities of daily living; EQ-T, EuroQoL-tariff; EQ-VAS, EuroQoLvisual analogue scale.

TABLE 3. Convergent validity: correlations between CB (ZCBI) and other related variables
ZCBI

moderate, 29.5 17.0; and severe, 43.0 16.7 (KruskalWallis, P 0.003). Concerning the rst working hypothesis, CB was signicantly associated with the proportion of the day devoted 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

Caregiver variables Caregivers age No. hours of helping patient with ADL No. hours helping with instrumental tasks Hours invested in care (less time for oneself) HADS-anxiety HADS-depression Patient variables Patients age Age at PD onset PD duration Barthel index SMS-ADL Hoehn and Yahr Clinical global impression-severity scale

0.05 0.55* 0.40* 0.62* 0.65* 0.54* 0.24* 0.24* 0.07 0.52* 0.53* 0.46* 0.56*

Spearman rank correlation coefcients. *P 0.05. ZCBI, Zarit caregiver burden inventory; SMS-ADL, SCOPA motoractivities of daily living; EQ-T, EuroQoL-tariff; EQ-VAS, EuroQoLvisual analogue scale.

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TABLE 4. Correlations between CB and caregivers HRQoL, and study variables
Disability/severity (patients) CB, ZCBI IB SMS-ADL HY HADS-depression Caregiver Patient

Caregivers HRQoL SF-36 SF-36 Physical function SF-36 Role-physical SF-36 Bodily pain SF-36 General health SF-36 Vitality SF-36 Social function SF-36 Emotional function SF-36 Mental health SF-36 Physical component SF-36 Mental component EuroQoL EQ-T EQ-VAS Caregiver burden ZCBI

0.36** 0.45** 0.50** 0.33** 0.64** 0.61** 0.52** 0.61** 0.29** 0.63** 0.48** 0.37**

0.17 0.24* 0.14 0.01 0.34** 0.31** 0.26* 0.37** 0.03 0.38** 0.19 0.12 0.52**

0.33** 0.15 0.20 0.04 0.34** 0.25* 0.17 0.25* 0.19 0.23* 0.20 0.16 0.53**

0.05 0.01 0.23* 0.02 0.41** 0.18 0.08 0.32** 0.01 0.28* 0.16 0.13 0.46**

0.25* 0.36** 0.31** 0.29** 0.55** 0.44** 0.48** 0.68** 0.14 0.62** 0.56** 0.40** 0.54**

0.10 0.16 0.21 0.25 0.29** 0.35** 0.11 0.33** 0.14 0.29** 0.20 0.20 0.50**

Spearman rank correlation coefcients. *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.

In the case of the fth 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 nondepressed patients (n 52) (diff. 19.2; 95% CI 11.127.4; MannWhitney, P 0.0001). Furthermore, caregivers of depressed patients also registered signicantly 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; MannWhitney 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 (SMSADL), depressed patients generated a higher CB and presented 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 invested 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 ve factors that accounted for 80% of the variance. The contribution of these ve factors to the CB was analyzed in a multiple regression model, which proved to be statistically signicant [F(4) 18.61, P 0.001],

explaining 55.7% of the variance. Caregivers psychological 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 signicantly associated with CB. In brief, CB was inuenced 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, reason enough for conducting an in-depth study into knowledge 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 rst 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. Accordingly, the ZCBI was considered a valid measure for evaluating CB in PD patients. In line with previous studies, CB was unrelated to caregivers age and showed a tendency to be higher in female than in male caregivers.2,4,6 In contrast, we failed to observe a signicant relationship with disease duration, a factor displaying low-to-moderate association with CB and psychosocial disadaptation.2,3,6 A relationship between disease

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TABLE 5. Exploratory factor analysis with varimax rotation
Factor 1, clinical aspects Hoehn and Hahr Barthel Index Clinical global impression-severity scale SMS-ADL SF-36 mental component HADS-anxiety caregiver HADS-depression caregiver HADS-depression patient HADS-anxiety patient EQ-VAS patient EQ-T patient SF-36 physical component EQ-VAS caregiver EQ-T caregiver No. hours helping with instrumental tasks No. hours helping patient with ADL Explained variance 0.89 0.85 0.84 0.79 0.87 0.84 0.84 0.84 0.78 0.70 0.70 0.91 0.74 0.67 21.13 16.67 16.56 13.05 Factor 2, caregivers psychol. well-being Factor 3, patients mood and HRQoL Factor 4, caregivers physical and global HRQoL

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Factor 5, caregiving hours

0.92 0.86 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.

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 signicantly associated with CB. The rst working hypothesis of the study was thus conrmed. As postulated, a signicant, albeit moderate, association 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 information 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 measuring disability and disease severity displayed similar relationships vis-a-vis CB and HRQoL. Previous studies ` reported the inuence of global severity2,6,7,37,41 and disability2-4,6,7,37,41 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-tomoderate correlation coefcients. The effect of caregivers depression on their EuroQoL global index, was similar to its effect on CB. Moreover, depressed care-

givers reported more CB and worse HRQoL than nondepressed 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 associated with CB level, but its correlation with caregivers HRQoL was weak. Nonetheless, signicant differences, both in burden and HRQoL, were found between caregivers of patients with and without depression. Nevertheless, patients with depression were signicantly more disabled than were nondepressed patients, a fact that may explainat least in partthe apparent inuence of patients depression on CB and well-being. The most important predictors of CB were the psychological well-being of the caregivers themselves, clinical 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-specic HRQoL measures were not used, in order to avoid administrative and respondent burden. This strategy, however, probably prevented us from obtaining more specic 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;

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13. Guy W. Early Clinical Drug Evaluation Unit (ECDEU) assessment manual for psychopharmacology (revised). Bethesda, MD: National Institute of Mental Health; 1976. p 217222. 14. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361370. 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. EuroQola 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 Committee. Unied Parkinsons disease rating scale. In: Fahn S, Marsden C, Calne D, Goldstein M, editors. Recent Developments in Parkinsons Disease, Vol. 2. Florham Park, NJ: Macmillan Health Care; 1987. p 153164. 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, Perez de Molino J, Alarcon T, San Cristobal E, Man zarbeitia I. Indice de Barthel: instrumento valido para la valoracion 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: SpringerVerlag; 1993. 23. MOS. Puntuacion del Cuestionario de Salud SF-36. Version es panola (Espana). 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. Efcacy 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 Parkinsons 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 clinical practice: are available health status surveys adequate? Qual Life Res 1995;4:293307. 29. Holmes W, Bix B, Shea J. SF-20 score and item distributions in a human immunodeciency virus-seropositive sample. Med Care 1996;34:562569. 30. Campbell DT, Fiske DW. Convergent and discriminant validation by the multitrait-multimethod matrix. Psychol Bull 1959;56:81105. 31. Scientic Advisory Committee of the Medical Outcomes Trust. Assessing health status and quality-of-life instruments: attributes and review criteria. Qual Life Res 2002;11:193205. 32. van der Linden FA, Kragt JJ, Klein M, van der Ploeg HM, Polman CH, Uitdehaag BM. Psychometric evaluation of the multiple sclerosis impact scale (MSIS-29) for proxy use. J Neurol Neurosurg Psychiatry 2005;76:16771681. 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, Bascaran M, Saiz P, Bousono M. Banco de instrumentos basicos para la practica de la psiquiatra clnica. Barcelona: Psiquiatra Editores SL; 2002. 35. Pasetti C, Rossi FS, Fornara R, Picco D, Foglia C, Galli J. Caregiving and Parkinsons disease. Neurol Sci 2003;24:203204. 36. Habermann B, Davis LL. Caring for family with Alzheimers disease and Parkinsons disease: needs, challenges and satisfaction. J Gerontol Nurs 2005;31:49 54.

2. time devoted to caring and strain deriving from the patients condition inuences 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 signicantly higher among depressed patients. Patients depression may thus be reecting the indirect inuence 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.

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