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Quality of life among caregivers of individuals with affective disorders
Journal of Affective Disorders 136 (2012) 660–665
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Journal of Affective Disorders journal homepage: www.elsevier.com/locate/jad
Research report
Quality of life among caregivers of individuals with affective disorders Xavier Zendjidjian a, b, Raphaelle Richieri a, c, Marc Adida c, Sandrine Limousin b, Nina Gaubert c, Nathalie Parola c, Christophe Lançon a, c, Laurent Boyer a, d,⁎ a b c d
Aix-Marseille Univ., EA 3279 Research Unit, 13385 Marseille, France Department of Psychiatry, La Conception University Hospital, Marseille, France Department of Psychiatry, Sainte-Marguerite University Hospital, Marseille, France Department of Public Health, La Timone University Hospital, Marseille, France
a r t i c l e
i n f o
Article history: Received 21 July 2011 Received in revised form 10 October 2011 Accepted 10 October 2011 Available online 17 November 2011 Keywords: Caregiver Major depressive disorder Bipolar disorder Quality of life
a b s t r a c t Objective: The aims of this study were as follows: 1. to assess the quality of life (QoL) of caregivers of individuals with affective disorders (major depressive disorder and bipolar disorder); 2. to compare QoL levels with those observed in caregivers of individuals with schizophrenia and in the general population; 3. to determine the impact of sociodemographic and clinical factors on the caregivers' QoL. Methods: Data were collected from the psychiatric departments of a French public teaching hospital. QoL was measured with the SF-36 questionnaire. The QoL of 232 caregivers of individuals with affective disorders was compared with 246 caregivers of individuals with schizophrenia and 232 French age–sex-matched controls. Results: Caregivers of individuals with affective disorders experienced lower QoL levels than French age–sex-matched controls. The most severe impairment concerned psychological distress, social and role disability due to emotional problems (SF36-mental composite score=38.2). In contrast, caregivers of individuals with affective disorders reported higher SF36 dimension scores than caregivers of individuals with schizophrenia. Among caregivers of individuals with affective disorders, women (p=0.010), parents/family or spouse (p=0.017), caregivers living in the same home (p =0.003) and caregivers of individuals with MDD (p=0.005) were significantly associated with a lower SF36-mental composite score. Conclusion: The QoL of caregivers of individuals with affective disorders is seriously impaired, mainly because of an altered psychological or mental well-being and social life. QoL adds interesting and complementary information to information that has been traditionally collected (burden, stress, perceived stigma) and facilitates the identification of specific needs that should be addressed in support groups for caregivers. © 2011 Elsevier B.V. All rights reserved.
1. Introduction Bipolar disorder (BD) and major depressive disorder (MDD) are major causes of suffering for patients, but they also affect the functioning of patients' families and caregivers
⁎ Corresponding author at: Aix-Marseille Univ., EA 3279, Boulevard Jean Moulin, 13385 Marseille cedex 05, France. Tel.: + 33 686936276; fax: + 33 491433516. E-mail address: [email protected] (L. Boyer). 0165-0327/$ – see front matter © 2011 Elsevier B.V. All rights reserved. doi:10.1016/j.jad.2011.10.011
(Ogilvie et al., 2005). Caregivers' negative experiences may affect their ability to care for the patient, restrict their roles and activities, and increase their psychosomatic, anxious, or depressive symptoms (Perlick et al., 2007; Steele et al., 2010). This is an important concern because the involvement of family caregivers is essential for the optimal treatment of patients by ensuring treatment compliance, continuity of care, and social support (Perlick et al., 2004). Therefore, maintaining caregivers' well-being is an important issue, both for the caregivers themselves and, indirectly, for the patients' health.
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Caregivers of individuals with BD or MDD have received significant attention in the past few years. Most of this research has focused on the caregiver's burden (objective and subjective) (Bauer et al., 2011; Hadryś et al., 2011; MollerLeimkuhler and Obermeier, 2008; Ogilvie et al., 2005; Ostacher et al., 2008), stress (Moller-Leimkuhler, 2006), perceived stigma (Gonzalez et al., 2007; Perlick et al., 2007), depression (Perlick et al., 2007) and psychiatric symptoms (Steele et al., 2010). Although studies have been conducted on specific issues in caregiving, few studies have focused on exploring quality of life (QoL) among caregivers of individuals with BD or MDD, in contrast to other diseases, such as schizophrenia (Caqueo-Urizar et al., 2009; Richieri et al., 2011) or cancer (Edwards and Ung, 2002; Mancini et al., 2011). QoL is one of the most important components involved in delivering an integral service to an ill person and their family and emphasises the subjective perspective of the patient and the family (Caqueo-Urizar et al., 2009). QoL encompasses several important dimensions, including psychological status, functional abilities, personal well-being, social interaction, economic status, vocational status, and physical health (Cramer et al., 2000). An exploration and evaluation of caregivers' QoL could be useful in improving patients' health and QoL, maintaining caregivers' health and caregiving ability, and developing new care strategies (Richieri et al., 2011). The aims of this study were as follows: 1. to assess the QoL of caregivers of individuals with affective disorders (BD and MDD); 2. to compare QoL levels with those observed in caregivers of individuals with schizophrenia and in the general population; 3. to determine the impact of sociodemographic and clinical factors on the QoL of caregivers of individuals with affective disorders. 2. Methods 2.1. Patients Data were collected from the psychiatric departments of a French public teaching hospital (Marseille). The caregiver was identified by the patient as the family member or friend who provided the most support or assistance, consistent with previous research in the area of family and mood disorder (Perlick et al., 2004). The inclusion criteria for the caregiver were as follows: (1) having a family member or a friend with a diagnosis of BD or MDD, according to the DSM-IV criteria (APA, 1994); (2) being identified by the individual with BD or MDD as the main caregiver; (3) being 18 years of age or older; (4) giving informed consent to participate in the study; and (5) being a native French speaker. This project was conducted in accordance with the Declaration of Helsinki and French Good Clinical Practices (CNIL, 2004; WMA, 2008). 2.2. Procedure For a period of 3 months, personnel from each centre identified inpatients and outpatients who had a diagnosis of BD or MDD and were between 18 and 64 years old. Each patient was asked by medical or nursing staff to name his or her main caregiver and whether we could contact the caregiver. If the patient agreed and the caregiver met the inclusion criteria, the following information was collected via self-report
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questionnaires (completed by the caregivers) or routine clinical interviews (conducted with the patient by a psychiatrist). 2.3. Data collection The data collected included the following: 1. Socio-demographic characteristics of the caregivers: gender, age, employment status, relationship to the patient, and living in the same home (yes/no); 2. Socio-demographic and clinical characteristics of the individuals with BD or MDD: gender, age, diagnosis according to DSM-IV, illness duration, symptoms assessed using the Clinical Global Impression (CGI) of severity. 3. QoL questionnaire: the Short Form 36 (SF36) was used to assess QoL (Leplege et al., 1998; Ware and Sherbourne, 1992). The SF36 is a generic, self-administered questionnaire that is used worldwide. It consists of 36 items describing 8 dimensions: Physical Functioning (PF), Social Functioning (SF), Role-Physical Problems (RPP), Role-Emotional Problems (REP), Mental Health (MH), Vitality (VIT), Bodily Pain (BP), and General Health (GH). Each dimension is scored within a range of 0 (low QoL level) to 100 (high QoL level). Two component summary measures of SF36, physical composite scores and mental composite scores (PCS-SF36 and MCSSF36, respectively), are calculated (T-score transformation, mean= 50, standard deviation = 10). The use of SF-36 in caregivers of individuals with mental health problems was recommended in a recent review of the available instruments in this domain (Harvey et al., 2008). 2.4. QoL of caregivers of individuals with affective disorders (BD and MDD) compared with caregivers of individuals with schizophrenia and the general population To better determine the level of QoL of caregivers of individuals with affective disorders, it is important to position QoL levels with regard to other mental disorders that are widely recognised as severely affecting the lives of caregivers and the general population. We compared BD and MDD scores with those available in the literature related to French populations: 1. schizophrenia: 246 caregivers of individuals with schizophrenia assessed with the SF36 (Richieri et al., 2011); 2. general population: the SF36 scores of caregivers of individuals with affective disorders were compared with those obtained for French age- and sex-matched controls issued from a normative sample of 3656 subjects representative of the French population with no adverse health conditions (Leplege et al., 1998). 2.5. Statistical analysis Data were expressed as proportion or mean and standard deviation. Mean comparisons of QoL scores between different sub-groups (BD, MDD, schizophrenia, and French age- and sex-matched controls) were performed using Student's t-test. Associations between QoL scores (PCS-SF36 and MCS-SF36) and continuous variables (caregiver: age; patient: age, illness duration, CGI) or categorical variables (caregiver: gender, employment status, relationship, living; patient: gender, diagnosis) were analysed using Pearson's correlation and
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Chi-squared tests. Multivariate analyses using linear regression were performed to determine the variables potentially related to QoL scores (PCS-SF36 and MCS-SF36). Variables relevant to the models were selected on the basis of a threshold p-value ≤0.2 during a univariate analysis and/or clinical interest. The final models expressed the standardised beta coefficient. The coefficient represents the variation in standard deviation for each dependent variable resulting from a change of one standard deviation among the various independent variables. All tests were two-sided. Statistical significance was defined as p b 0.05. The statistical analysis was performed using the SPSS version 17.0 software package (SPSS Inc., Chicago, IL, USA).
3. Results 3.1. Sample characteristics Of the 297 caregivers who were screened during the study period, 78% of those invited to participate agreed. Caregivers who participated did not differ statistically from those who declined in terms of age, gender, employment status, relationship to the patient and residence (all p > 0.05). Therefore, our sample consisted of 232 caregivers. The characteristics of the caregivers and individuals with affective disorder (115 BD and 117 MDD) are presented in Table 1. Of the 232 caregivers, 58.2% were women, the mean age was 52.2 years (S.D. = 15.5) and 47.0% were parents or other family relations. A majority of the caregivers was employed (52.6%), and 61.2% lived in the same home as the individual with affective disorder. Caregivers reported lower QoL levels for the MCS (38.2) than for the PCS (49.4).
Table 1 Sociodemographic and clinical characteristics of caregivers and individuals with affective disorders (N = 232). Characteristics 1. Caregiver Gender Female Male Age, M (SD) Employment status Not working Working Relationship Parent/other family relation Spouse Friend/other Living in the same home SF36a, M (SD) Mental composite score Physical composite score 2. Patient Gender Female Male Age, M (SD) Diagnosis Bipolar disorder Major depressive disorder Illness duration, M (SD) CGIb, M (SD)
N (%)
135 (58.2) 97 (41.8) 52.2 (15.5) 110 (47.4) 122 (52.6) 109 95 27 142
(47.0) (40.9) (11.6) (61.2)
38.2 (13.1) 49.4 (9.0)
152 (65.5) 80 (34.5) 47.4 (16.1) 115 117 9.3 4.7
(49.6) (50.4) (9.5) (1.0)
a
Range [0–100], 0 = lowest and 100 = highest level of QoL. Clinical global impression of severity [1–7], from 1 (normal) to 7 (amongst the most severely ill patients). b
3.3. Factors associated with the QoL of caregivers of individuals with BD and MDD 3.2. Comparisons of SF36 dimension scores between caregivers of individuals with BD and MDD, schizophrenia, and French age–sex-matched controls Dimension scores of the SF36 are presented in Table 2. There was no statistically significant difference in SF36 dimension scores between caregivers of individuals with BD and MDD (all p > 0.05). On the contrary, MCS were statistically lower for caregivers of individuals with MDD than for caregivers of individuals with BD. Role-Emotional Problems and Vitality, which contribute most to the scoring of the MCS measure, were the most altered SF36 dimensions for the caregivers of individuals with MDD. Caregivers of individuals with BD and MDD reported higher SF36 dimension scores than caregivers of individuals with schizophrenia (Role-Emotional Problems, Mental Health, Vitality, General Health, and Physical Functioning, General Health). Caregivers of individuals with BD reported higher PCS than caregivers of individuals with schizophrenia, whereas caregivers of individuals with MDD reported higher MCS. Caregivers of individuals with BD and MDD reported lower QoL levels in comparison with French age–sex-matched controls for all SF36 dimensions except Physical Functioning and Role-Emotional Problems for BD and Physical Functioning for MDD.
The results of the univariate and multivariate analyses are presented in Table 3. In the multivariate analysis, no relationship was found between the various parameters and the PCS, except for age. Older caregivers reported lower QoL levels (p=0.011). In contrast, several parameters were significantly associated with lower MCS: gender (p=0.010), relationship to the patient (p=0.017), living in the same home (p=0.003) and diagnosis (p=0.005). Women, parents/family or spouse, caregivers living in the same home and caregivers of individuals with MDD reported altered QoL levels. 4. Discussion In the past few decades, the literature has addressed the experiences of caregivers of individuals with affective disorders using various outcomes, such as burden, stress, perceived stigma, depression, and psychiatric symptoms (Bauer et al., 2011; Gonzalez et al., 2007; Hadryś et al., 2011; Moller-Leimkuhler, 2006; Moller-Leimkuhler and Obermeier, 2008; Ogilvie et al., 2005; Ostacher et al., 2008; Perlick et al., 2007; Steele et al., 2010). Few data are available regarding QoL among caregivers of individuals with BD or MDD. This study should provide pertinent information about the health of caregivers and patients. In light of the importance of this information, several interesting results of the current study must be discussed.
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Table 2 Comparisons of SF36 score means (SD) between caregivers of individuals with bipolar disorder (BD), major depressive disorder (MDD), schizophrenia (S), and French age–sex-matched controlsa. BD
MDD
Controlsb
S (N = 246)
Controlsc
(N = 115)
(N = 117)
SF36d
M
(SD)
M
(SD)
p
M
(SD)
p (BD–S)
p (MDD–S)
(N = 115) M
(SD)
p
(N = 117) M
(SD)
p
Physical functioning Social functioning Role-Physical Problems Role-Emotional Problems Mental health Vitality Bodily pain General health Mental composite score Physical composite score
80.8 66.8 64.1 65.2 56.4 51.2 62.7 63.0 40.2 48.5
(20.9) (28.1) (41.6) (79.6) (20.6) (20.1) (24.6) (22.3) (12.3) (50.2)
85.4 60.9 57.9 49.9 52.6 45.5 61.2 63.6 36.4 50.2
(25.3) (26.7) (39.8) (40.2) (22.7) (23.0) (22.1) (20.3) (13.6) (8.7)
0.134 0.099 0.258 0.071 0.197 0.053 0.625 0.836 0.044 0.207
78.2 62.5 55.9 47.7 51.4 46.4 57.2 55.4 37.4 46.9
(23.3) (23.9) (40.1) (41.2) (18.7) (19.7) (25.0) (21.6) (10.5) (10.0)
0.322 0.153 0.078 0.007 0.027 0.040 0.053 0.004 0.043 0.193
0.009 0.564 0.657 0.646 0.622 0.700 0.129 0.001 0.502 0.003
83.8 81.4 72.0 68.2 60.0 81.4 82.1 68.3 48.2 49.7
(8.4) (7.9) (6.9) (5.3) (3.5) (3.7) (6.0) (2.8) (1.3) (3.4)
0.648 0.001 0.001 0.101 b 0.001 b 0.001 b 0.001 b 0.001 b 0.001 0.354
83.8 81.1 81.1 81.6 68.2 59.7 72.3 68.2 48.0 49.8
(9.4) (3.7) (9.4) (6.7) (2.9) (3.7) (7.0) (5.7) (1.4) (3.8)
0.518 b 0.001 b 0.001 b 0.001 b 0.001 b 0.001 b 0.001 0.020 b 0.001 0.722
Bold values: p b 0.05. a Range [0–100], 0 = lowest and 100 = highest level of QoL. b French age–sex-matched controls for BD patients. c French age–sex-matched controls for MDD patients. d From Leplege A, Ecosse E, Pouchot J, Coste J, Perneger TV. MOS SF36 questionnaire. Manual and guidelines for scores' interpretation. 2001.
problems (MCS). These results confirm previous studies on the significant impact of caregiving, particularly for individuals with mental disorders (Heru et al., 2004; Perlick et al., 2007; Steele et al., 2010). In France, as in other western countries, family has taken responsibility for functions performed in the past by psychiatric institutions (Reine et al., 2003). However, the French health system has not sufficiently taken into account this change in the development of health programmes and
Caregivers of individuals with affective disorders experienced lower QoL levels than French age–sex-matched controls. They reported impairment across multiple domains of QoL, including problems related to physical health (Role-Physical Problems), social activities (Social Functioning), feelings of nervousness, depression, and tiredness (Mental Health, Vitality), and personal health (GH). The most severe impairment concerned psychological distress and social and role disability due to emotional
Table 3 Associations between mental composite/physical composite scores and sociodemographic/clinical characteristics in caregivers of individuals with affective disorders. Univariate analysis
Multivariate analysis
Univariate analysis
Multivariate analysis
MCS
ßc
PCS
ßc
p
0.020
0.795
− 0.211 − 0.128
0.011 0.097
0.395
0.027
0.722
0.500
–
–
0.270
− 0.087
0.243
0.027 0.208
− 0.070 − 0.090
0.398 0.232
0.133 0.024
0.036 0.110
0.661 0.130
p a
M ± SD or R 1. Caregiver Gender Age Employment status Relationship
Living in the same home
2. Patient Gender Age Diagnosis Illness duration CGI
Female Male Not working Working Parent/other family Spouse Friend/other No Yes
Female Male Bipolar disorder Major depressive disorder
36.0 (12.0) 41.4 (14.1) − 0.001 38.0 (12.7) 38.4 (13.5) 36.8 (13.3) 37.6 (12.6) 46.4 (11.5) 40.4 (13.1) 36.7 (13.0)
37.2 (12.7) 40.1 (13.8) 0.058 40.2 (12.3) 36.4 (13.5) 0.020 − 0.040
p
b
p a
M ± SD or R 0.004
− 0.193
0.010
0.986 0.821
− 0.006 –
0.934 –
0.010
− 0.177
0.017
0.056
0.213
0.003
0.138
− 0.029
0.688
0.423 0.045
0.011 0.202
0.883 0.005
0.783 0.195
– − 0.010
– 0.886
49.6 (9.3) 49.1 (8.6) − 0.285 47.1 (7.9) 51.3 (9.5) 49.8 (9.8) 48.4 (8.8) 51.2 (5.9) 49.9 (9.9) 49.0 (8.5)
48.9 (9.0) 50.3 (9.0) − 0.159 48.5 (9.4) 50.1 (8.7) − 0.010 0.161
b
0.710 b0.001 0.001
Bold values: p b 0.05. a M ± SD: mean ± standard deviation. b R: Spearman's correlation coefficient. c ß: standardised beta coefficient (ß represents the change of the standard deviation in QoL score resulting from a change of one standard deviation in the independent variable).
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policies. These specific needs should be addressed in the future through a widespread dissemination of educational and support groups for caregivers (Dixon et al., 2001, 2004; Sherman, 2003). Although there was no statistically significant difference in SF36 dimension scores between caregivers of individuals with BD and MDD, we noted that caregivers of individuals with MDD had more severe impairment concerning Social Functioning, Role Emotional, Vitality (MCS in the univariate and multivariate analyses, p b 0.05). This finding appears to contradict previous studies (Chakrabarti et al., 1992; Heru and Ryan, 2004), in which caregivers of BD relatives reported a greater subjective burden than caregivers of patients with depression. Comparisons with these studies are limited because of small sample sizes, different states of clinical severity, different measurement instruments, and socio-cultural differences between countries. Moreover, patients with BD, in contrast to MDD, may present mild mood elevation, which may be experienced as a relief by caregivers (Ostacher et al., 2008). However, with respect to the question of whether depressive or manic symptoms cause a higher burden, the literature is inconsistent (Bauer et al., 2011). Moreover, longitudinal studies of bipolar disorder have suggested that the predominant clinical problem is depression, not mood elevation, and that chronicity in the illness is most associated with depressed mood (Judd et al., 2008a,b). Another explanation could be the absence of evaluations of the duration and quality of inter-episodes in our population with BD and MDD. This is one limitation of our study. Indeed, patients without residual symptoms cause less burden on caregivers (Ogilvie et al., 2005). Further investigations are needed to understand these differences, but our findings suggest that the impact of BD and MDD on caregivers' QoL does not affect exactly the same dimensions of QoL. Programmes developed for caregivers should take these specificities into account. In accordance with the study by Moller-Leimkuhler (2006), caregivers of individuals with affective disorders reported higher QoL levels than caregivers of schizophrenic patients. Interestingly, the differences between caregivers of individuals with BD and individuals with schizophrenia concerned mental and psychological dimensions (RoleEmotional Problems, Mental Health, Vitality, MCS) while the differences between MDD and schizophrenia concerned only physical dimensions (Physical Functioning, General Health, PCS). These findings confirm the necessity of a multidimensional approach in identifying the most-impaired domain to improve programmes for caregivers. Concerning the factors associated with caregivers' mental composite scores, caregivers' characteristics were mainly related to QoL. As expected, women had lower QoL than men. This sexrelated difference in the SF36-MCS reflects a trend observed in the general population with SF36 and in caregivers of schizophrenia (Leplege et al., 1998; Richieri et al., 2011). In a study by Reinares et al. (2006), being a female caretaker of an individual with BD was associated with a higher subjective burden. Bauer et al. (2011) found that female caregivers had more problems regarding the quality of the relationship with the patient whereas male caregivers experienced more constraints on their own autonomy. Given this gender difference in the type of burden and QoL, the question is how
this gender difference can be taken into account in clinical practice and psychoeducation groups. It was somewhat surprising to find that the relationship of the caregiver to the patient (parent/family or spouse) and living together in the same home were associated with lower QoL levels whereas clinical characteristics such as illness duration or CGI were not significantly associated with QoL. These findings suggest that the proximity of the caregiver to the patient, rather than the severity of the patient's illness, have a greater impact on the caregiver's experience. 4.1. Strengths and limitations 1) This was a cross-sectional study that precludes drawing causal inferences. Future studies should focus on the longitudinal relationship between caregivers' and patients' characteristics and QoL. The use of qualitative methods might have enhanced the interpretation of these findings. 2) The representativeness of the sample should be questioned. Because our study was conducted in a large French teaching hospital, our findings may not be extrapolated. Patients with greater severity of illness are more likely to be treated in our hospital; consequently, they may not represent a balanced sample of the population with affective disorders. 3) Several patient measures, such as current mood state, the number of days well in the previous year, and comorbidities, were not analysed in the present study. Further studies should integrate these parameters to examine the role of these characteristics in the QoL of caregivers. 5. Conclusion This work confirms that the QoL of caregivers of individuals with affective disorders is seriously impaired, mainly by altered psychological or mental well-being and social life. QoL adds interesting and complementary information to the information that has traditionally been collected (burden, stress, perceived stigma). QoL is oriented towards a more global view of individuals with affective disorders and their caregivers, and it may help in identifying specific needs that should be addressed in support groups for caregivers. Role of funding source None. Conflict of interest The authors have declared that there are no conflicts of interest in relation to the subject of this study. Acknowledgements Our thanks to all of the patients and staff who helped with the study: Remy Dumas, Delphine Drai, Claire Fajula, Emmanuel Richard, Romain Padovani, Jean-Claude Samuelian, Raoul Belzeaux, François Simon Wawrzyniak, and Genevieve Paillisse.
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Research report
Quality of life among caregivers of individuals with affective disorders Xavier Zendjidjian a, b, Raphaelle Richieri a, c, Marc Adida c, Sandrine Limousin b, Nina Gaubert c, Nathalie Parola c, Christophe Lançon a, c, Laurent Boyer a, d,⁎ a b c d
Aix-Marseille Univ., EA 3279 Research Unit, 13385 Marseille, France Department of Psychiatry, La Conception University Hospital, Marseille, France Department of Psychiatry, Sainte-Marguerite University Hospital, Marseille, France Department of Public Health, La Timone University Hospital, Marseille, France
a r t i c l e
i n f o
Article history: Received 21 July 2011 Received in revised form 10 October 2011 Accepted 10 October 2011 Available online 17 November 2011 Keywords: Caregiver Major depressive disorder Bipolar disorder Quality of life
a b s t r a c t Objective: The aims of this study were as follows: 1. to assess the quality of life (QoL) of caregivers of individuals with affective disorders (major depressive disorder and bipolar disorder); 2. to compare QoL levels with those observed in caregivers of individuals with schizophrenia and in the general population; 3. to determine the impact of sociodemographic and clinical factors on the caregivers' QoL. Methods: Data were collected from the psychiatric departments of a French public teaching hospital. QoL was measured with the SF-36 questionnaire. The QoL of 232 caregivers of individuals with affective disorders was compared with 246 caregivers of individuals with schizophrenia and 232 French age–sex-matched controls. Results: Caregivers of individuals with affective disorders experienced lower QoL levels than French age–sex-matched controls. The most severe impairment concerned psychological distress, social and role disability due to emotional problems (SF36-mental composite score=38.2). In contrast, caregivers of individuals with affective disorders reported higher SF36 dimension scores than caregivers of individuals with schizophrenia. Among caregivers of individuals with affective disorders, women (p=0.010), parents/family or spouse (p=0.017), caregivers living in the same home (p =0.003) and caregivers of individuals with MDD (p=0.005) were significantly associated with a lower SF36-mental composite score. Conclusion: The QoL of caregivers of individuals with affective disorders is seriously impaired, mainly because of an altered psychological or mental well-being and social life. QoL adds interesting and complementary information to information that has been traditionally collected (burden, stress, perceived stigma) and facilitates the identification of specific needs that should be addressed in support groups for caregivers. © 2011 Elsevier B.V. All rights reserved.
1. Introduction Bipolar disorder (BD) and major depressive disorder (MDD) are major causes of suffering for patients, but they also affect the functioning of patients' families and caregivers
⁎ Corresponding author at: Aix-Marseille Univ., EA 3279, Boulevard Jean Moulin, 13385 Marseille cedex 05, France. Tel.: + 33 686936276; fax: + 33 491433516. E-mail address: [email protected] (L. Boyer). 0165-0327/$ – see front matter © 2011 Elsevier B.V. All rights reserved. doi:10.1016/j.jad.2011.10.011
(Ogilvie et al., 2005). Caregivers' negative experiences may affect their ability to care for the patient, restrict their roles and activities, and increase their psychosomatic, anxious, or depressive symptoms (Perlick et al., 2007; Steele et al., 2010). This is an important concern because the involvement of family caregivers is essential for the optimal treatment of patients by ensuring treatment compliance, continuity of care, and social support (Perlick et al., 2004). Therefore, maintaining caregivers' well-being is an important issue, both for the caregivers themselves and, indirectly, for the patients' health.
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Caregivers of individuals with BD or MDD have received significant attention in the past few years. Most of this research has focused on the caregiver's burden (objective and subjective) (Bauer et al., 2011; Hadryś et al., 2011; MollerLeimkuhler and Obermeier, 2008; Ogilvie et al., 2005; Ostacher et al., 2008), stress (Moller-Leimkuhler, 2006), perceived stigma (Gonzalez et al., 2007; Perlick et al., 2007), depression (Perlick et al., 2007) and psychiatric symptoms (Steele et al., 2010). Although studies have been conducted on specific issues in caregiving, few studies have focused on exploring quality of life (QoL) among caregivers of individuals with BD or MDD, in contrast to other diseases, such as schizophrenia (Caqueo-Urizar et al., 2009; Richieri et al., 2011) or cancer (Edwards and Ung, 2002; Mancini et al., 2011). QoL is one of the most important components involved in delivering an integral service to an ill person and their family and emphasises the subjective perspective of the patient and the family (Caqueo-Urizar et al., 2009). QoL encompasses several important dimensions, including psychological status, functional abilities, personal well-being, social interaction, economic status, vocational status, and physical health (Cramer et al., 2000). An exploration and evaluation of caregivers' QoL could be useful in improving patients' health and QoL, maintaining caregivers' health and caregiving ability, and developing new care strategies (Richieri et al., 2011). The aims of this study were as follows: 1. to assess the QoL of caregivers of individuals with affective disorders (BD and MDD); 2. to compare QoL levels with those observed in caregivers of individuals with schizophrenia and in the general population; 3. to determine the impact of sociodemographic and clinical factors on the QoL of caregivers of individuals with affective disorders. 2. Methods 2.1. Patients Data were collected from the psychiatric departments of a French public teaching hospital (Marseille). The caregiver was identified by the patient as the family member or friend who provided the most support or assistance, consistent with previous research in the area of family and mood disorder (Perlick et al., 2004). The inclusion criteria for the caregiver were as follows: (1) having a family member or a friend with a diagnosis of BD or MDD, according to the DSM-IV criteria (APA, 1994); (2) being identified by the individual with BD or MDD as the main caregiver; (3) being 18 years of age or older; (4) giving informed consent to participate in the study; and (5) being a native French speaker. This project was conducted in accordance with the Declaration of Helsinki and French Good Clinical Practices (CNIL, 2004; WMA, 2008). 2.2. Procedure For a period of 3 months, personnel from each centre identified inpatients and outpatients who had a diagnosis of BD or MDD and were between 18 and 64 years old. Each patient was asked by medical or nursing staff to name his or her main caregiver and whether we could contact the caregiver. If the patient agreed and the caregiver met the inclusion criteria, the following information was collected via self-report
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questionnaires (completed by the caregivers) or routine clinical interviews (conducted with the patient by a psychiatrist). 2.3. Data collection The data collected included the following: 1. Socio-demographic characteristics of the caregivers: gender, age, employment status, relationship to the patient, and living in the same home (yes/no); 2. Socio-demographic and clinical characteristics of the individuals with BD or MDD: gender, age, diagnosis according to DSM-IV, illness duration, symptoms assessed using the Clinical Global Impression (CGI) of severity. 3. QoL questionnaire: the Short Form 36 (SF36) was used to assess QoL (Leplege et al., 1998; Ware and Sherbourne, 1992). The SF36 is a generic, self-administered questionnaire that is used worldwide. It consists of 36 items describing 8 dimensions: Physical Functioning (PF), Social Functioning (SF), Role-Physical Problems (RPP), Role-Emotional Problems (REP), Mental Health (MH), Vitality (VIT), Bodily Pain (BP), and General Health (GH). Each dimension is scored within a range of 0 (low QoL level) to 100 (high QoL level). Two component summary measures of SF36, physical composite scores and mental composite scores (PCS-SF36 and MCSSF36, respectively), are calculated (T-score transformation, mean= 50, standard deviation = 10). The use of SF-36 in caregivers of individuals with mental health problems was recommended in a recent review of the available instruments in this domain (Harvey et al., 2008). 2.4. QoL of caregivers of individuals with affective disorders (BD and MDD) compared with caregivers of individuals with schizophrenia and the general population To better determine the level of QoL of caregivers of individuals with affective disorders, it is important to position QoL levels with regard to other mental disorders that are widely recognised as severely affecting the lives of caregivers and the general population. We compared BD and MDD scores with those available in the literature related to French populations: 1. schizophrenia: 246 caregivers of individuals with schizophrenia assessed with the SF36 (Richieri et al., 2011); 2. general population: the SF36 scores of caregivers of individuals with affective disorders were compared with those obtained for French age- and sex-matched controls issued from a normative sample of 3656 subjects representative of the French population with no adverse health conditions (Leplege et al., 1998). 2.5. Statistical analysis Data were expressed as proportion or mean and standard deviation. Mean comparisons of QoL scores between different sub-groups (BD, MDD, schizophrenia, and French age- and sex-matched controls) were performed using Student's t-test. Associations between QoL scores (PCS-SF36 and MCS-SF36) and continuous variables (caregiver: age; patient: age, illness duration, CGI) or categorical variables (caregiver: gender, employment status, relationship, living; patient: gender, diagnosis) were analysed using Pearson's correlation and
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Chi-squared tests. Multivariate analyses using linear regression were performed to determine the variables potentially related to QoL scores (PCS-SF36 and MCS-SF36). Variables relevant to the models were selected on the basis of a threshold p-value ≤0.2 during a univariate analysis and/or clinical interest. The final models expressed the standardised beta coefficient. The coefficient represents the variation in standard deviation for each dependent variable resulting from a change of one standard deviation among the various independent variables. All tests were two-sided. Statistical significance was defined as p b 0.05. The statistical analysis was performed using the SPSS version 17.0 software package (SPSS Inc., Chicago, IL, USA).
3. Results 3.1. Sample characteristics Of the 297 caregivers who were screened during the study period, 78% of those invited to participate agreed. Caregivers who participated did not differ statistically from those who declined in terms of age, gender, employment status, relationship to the patient and residence (all p > 0.05). Therefore, our sample consisted of 232 caregivers. The characteristics of the caregivers and individuals with affective disorder (115 BD and 117 MDD) are presented in Table 1. Of the 232 caregivers, 58.2% were women, the mean age was 52.2 years (S.D. = 15.5) and 47.0% were parents or other family relations. A majority of the caregivers was employed (52.6%), and 61.2% lived in the same home as the individual with affective disorder. Caregivers reported lower QoL levels for the MCS (38.2) than for the PCS (49.4).
Table 1 Sociodemographic and clinical characteristics of caregivers and individuals with affective disorders (N = 232). Characteristics 1. Caregiver Gender Female Male Age, M (SD) Employment status Not working Working Relationship Parent/other family relation Spouse Friend/other Living in the same home SF36a, M (SD) Mental composite score Physical composite score 2. Patient Gender Female Male Age, M (SD) Diagnosis Bipolar disorder Major depressive disorder Illness duration, M (SD) CGIb, M (SD)
N (%)
135 (58.2) 97 (41.8) 52.2 (15.5) 110 (47.4) 122 (52.6) 109 95 27 142
(47.0) (40.9) (11.6) (61.2)
38.2 (13.1) 49.4 (9.0)
152 (65.5) 80 (34.5) 47.4 (16.1) 115 117 9.3 4.7
(49.6) (50.4) (9.5) (1.0)
a
Range [0–100], 0 = lowest and 100 = highest level of QoL. Clinical global impression of severity [1–7], from 1 (normal) to 7 (amongst the most severely ill patients). b
3.3. Factors associated with the QoL of caregivers of individuals with BD and MDD 3.2. Comparisons of SF36 dimension scores between caregivers of individuals with BD and MDD, schizophrenia, and French age–sex-matched controls Dimension scores of the SF36 are presented in Table 2. There was no statistically significant difference in SF36 dimension scores between caregivers of individuals with BD and MDD (all p > 0.05). On the contrary, MCS were statistically lower for caregivers of individuals with MDD than for caregivers of individuals with BD. Role-Emotional Problems and Vitality, which contribute most to the scoring of the MCS measure, were the most altered SF36 dimensions for the caregivers of individuals with MDD. Caregivers of individuals with BD and MDD reported higher SF36 dimension scores than caregivers of individuals with schizophrenia (Role-Emotional Problems, Mental Health, Vitality, General Health, and Physical Functioning, General Health). Caregivers of individuals with BD reported higher PCS than caregivers of individuals with schizophrenia, whereas caregivers of individuals with MDD reported higher MCS. Caregivers of individuals with BD and MDD reported lower QoL levels in comparison with French age–sex-matched controls for all SF36 dimensions except Physical Functioning and Role-Emotional Problems for BD and Physical Functioning for MDD.
The results of the univariate and multivariate analyses are presented in Table 3. In the multivariate analysis, no relationship was found between the various parameters and the PCS, except for age. Older caregivers reported lower QoL levels (p=0.011). In contrast, several parameters were significantly associated with lower MCS: gender (p=0.010), relationship to the patient (p=0.017), living in the same home (p=0.003) and diagnosis (p=0.005). Women, parents/family or spouse, caregivers living in the same home and caregivers of individuals with MDD reported altered QoL levels. 4. Discussion In the past few decades, the literature has addressed the experiences of caregivers of individuals with affective disorders using various outcomes, such as burden, stress, perceived stigma, depression, and psychiatric symptoms (Bauer et al., 2011; Gonzalez et al., 2007; Hadryś et al., 2011; Moller-Leimkuhler, 2006; Moller-Leimkuhler and Obermeier, 2008; Ogilvie et al., 2005; Ostacher et al., 2008; Perlick et al., 2007; Steele et al., 2010). Few data are available regarding QoL among caregivers of individuals with BD or MDD. This study should provide pertinent information about the health of caregivers and patients. In light of the importance of this information, several interesting results of the current study must be discussed.
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Table 2 Comparisons of SF36 score means (SD) between caregivers of individuals with bipolar disorder (BD), major depressive disorder (MDD), schizophrenia (S), and French age–sex-matched controlsa. BD
MDD
Controlsb
S (N = 246)
Controlsc
(N = 115)
(N = 117)
SF36d
M
(SD)
M
(SD)
p
M
(SD)
p (BD–S)
p (MDD–S)
(N = 115) M
(SD)
p
(N = 117) M
(SD)
p
Physical functioning Social functioning Role-Physical Problems Role-Emotional Problems Mental health Vitality Bodily pain General health Mental composite score Physical composite score
80.8 66.8 64.1 65.2 56.4 51.2 62.7 63.0 40.2 48.5
(20.9) (28.1) (41.6) (79.6) (20.6) (20.1) (24.6) (22.3) (12.3) (50.2)
85.4 60.9 57.9 49.9 52.6 45.5 61.2 63.6 36.4 50.2
(25.3) (26.7) (39.8) (40.2) (22.7) (23.0) (22.1) (20.3) (13.6) (8.7)
0.134 0.099 0.258 0.071 0.197 0.053 0.625 0.836 0.044 0.207
78.2 62.5 55.9 47.7 51.4 46.4 57.2 55.4 37.4 46.9
(23.3) (23.9) (40.1) (41.2) (18.7) (19.7) (25.0) (21.6) (10.5) (10.0)
0.322 0.153 0.078 0.007 0.027 0.040 0.053 0.004 0.043 0.193
0.009 0.564 0.657 0.646 0.622 0.700 0.129 0.001 0.502 0.003
83.8 81.4 72.0 68.2 60.0 81.4 82.1 68.3 48.2 49.7
(8.4) (7.9) (6.9) (5.3) (3.5) (3.7) (6.0) (2.8) (1.3) (3.4)
0.648 0.001 0.001 0.101 b 0.001 b 0.001 b 0.001 b 0.001 b 0.001 0.354
83.8 81.1 81.1 81.6 68.2 59.7 72.3 68.2 48.0 49.8
(9.4) (3.7) (9.4) (6.7) (2.9) (3.7) (7.0) (5.7) (1.4) (3.8)
0.518 b 0.001 b 0.001 b 0.001 b 0.001 b 0.001 b 0.001 0.020 b 0.001 0.722
Bold values: p b 0.05. a Range [0–100], 0 = lowest and 100 = highest level of QoL. b French age–sex-matched controls for BD patients. c French age–sex-matched controls for MDD patients. d From Leplege A, Ecosse E, Pouchot J, Coste J, Perneger TV. MOS SF36 questionnaire. Manual and guidelines for scores' interpretation. 2001.
problems (MCS). These results confirm previous studies on the significant impact of caregiving, particularly for individuals with mental disorders (Heru et al., 2004; Perlick et al., 2007; Steele et al., 2010). In France, as in other western countries, family has taken responsibility for functions performed in the past by psychiatric institutions (Reine et al., 2003). However, the French health system has not sufficiently taken into account this change in the development of health programmes and
Caregivers of individuals with affective disorders experienced lower QoL levels than French age–sex-matched controls. They reported impairment across multiple domains of QoL, including problems related to physical health (Role-Physical Problems), social activities (Social Functioning), feelings of nervousness, depression, and tiredness (Mental Health, Vitality), and personal health (GH). The most severe impairment concerned psychological distress and social and role disability due to emotional
Table 3 Associations between mental composite/physical composite scores and sociodemographic/clinical characteristics in caregivers of individuals with affective disorders. Univariate analysis
Multivariate analysis
Univariate analysis
Multivariate analysis
MCS
ßc
PCS
ßc
p
0.020
0.795
− 0.211 − 0.128
0.011 0.097
0.395
0.027
0.722
0.500
–
–
0.270
− 0.087
0.243
0.027 0.208
− 0.070 − 0.090
0.398 0.232
0.133 0.024
0.036 0.110
0.661 0.130
p a
M ± SD or R 1. Caregiver Gender Age Employment status Relationship
Living in the same home
2. Patient Gender Age Diagnosis Illness duration CGI
Female Male Not working Working Parent/other family Spouse Friend/other No Yes
Female Male Bipolar disorder Major depressive disorder
36.0 (12.0) 41.4 (14.1) − 0.001 38.0 (12.7) 38.4 (13.5) 36.8 (13.3) 37.6 (12.6) 46.4 (11.5) 40.4 (13.1) 36.7 (13.0)
37.2 (12.7) 40.1 (13.8) 0.058 40.2 (12.3) 36.4 (13.5) 0.020 − 0.040
p
b
p a
M ± SD or R 0.004
− 0.193
0.010
0.986 0.821
− 0.006 –
0.934 –
0.010
− 0.177
0.017
0.056
0.213
0.003
0.138
− 0.029
0.688
0.423 0.045
0.011 0.202
0.883 0.005
0.783 0.195
– − 0.010
– 0.886
49.6 (9.3) 49.1 (8.6) − 0.285 47.1 (7.9) 51.3 (9.5) 49.8 (9.8) 48.4 (8.8) 51.2 (5.9) 49.9 (9.9) 49.0 (8.5)
48.9 (9.0) 50.3 (9.0) − 0.159 48.5 (9.4) 50.1 (8.7) − 0.010 0.161
b
0.710 b0.001 0.001
Bold values: p b 0.05. a M ± SD: mean ± standard deviation. b R: Spearman's correlation coefficient. c ß: standardised beta coefficient (ß represents the change of the standard deviation in QoL score resulting from a change of one standard deviation in the independent variable).
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policies. These specific needs should be addressed in the future through a widespread dissemination of educational and support groups for caregivers (Dixon et al., 2001, 2004; Sherman, 2003). Although there was no statistically significant difference in SF36 dimension scores between caregivers of individuals with BD and MDD, we noted that caregivers of individuals with MDD had more severe impairment concerning Social Functioning, Role Emotional, Vitality (MCS in the univariate and multivariate analyses, p b 0.05). This finding appears to contradict previous studies (Chakrabarti et al., 1992; Heru and Ryan, 2004), in which caregivers of BD relatives reported a greater subjective burden than caregivers of patients with depression. Comparisons with these studies are limited because of small sample sizes, different states of clinical severity, different measurement instruments, and socio-cultural differences between countries. Moreover, patients with BD, in contrast to MDD, may present mild mood elevation, which may be experienced as a relief by caregivers (Ostacher et al., 2008). However, with respect to the question of whether depressive or manic symptoms cause a higher burden, the literature is inconsistent (Bauer et al., 2011). Moreover, longitudinal studies of bipolar disorder have suggested that the predominant clinical problem is depression, not mood elevation, and that chronicity in the illness is most associated with depressed mood (Judd et al., 2008a,b). Another explanation could be the absence of evaluations of the duration and quality of inter-episodes in our population with BD and MDD. This is one limitation of our study. Indeed, patients without residual symptoms cause less burden on caregivers (Ogilvie et al., 2005). Further investigations are needed to understand these differences, but our findings suggest that the impact of BD and MDD on caregivers' QoL does not affect exactly the same dimensions of QoL. Programmes developed for caregivers should take these specificities into account. In accordance with the study by Moller-Leimkuhler (2006), caregivers of individuals with affective disorders reported higher QoL levels than caregivers of schizophrenic patients. Interestingly, the differences between caregivers of individuals with BD and individuals with schizophrenia concerned mental and psychological dimensions (RoleEmotional Problems, Mental Health, Vitality, MCS) while the differences between MDD and schizophrenia concerned only physical dimensions (Physical Functioning, General Health, PCS). These findings confirm the necessity of a multidimensional approach in identifying the most-impaired domain to improve programmes for caregivers. Concerning the factors associated with caregivers' mental composite scores, caregivers' characteristics were mainly related to QoL. As expected, women had lower QoL than men. This sexrelated difference in the SF36-MCS reflects a trend observed in the general population with SF36 and in caregivers of schizophrenia (Leplege et al., 1998; Richieri et al., 2011). In a study by Reinares et al. (2006), being a female caretaker of an individual with BD was associated with a higher subjective burden. Bauer et al. (2011) found that female caregivers had more problems regarding the quality of the relationship with the patient whereas male caregivers experienced more constraints on their own autonomy. Given this gender difference in the type of burden and QoL, the question is how
this gender difference can be taken into account in clinical practice and psychoeducation groups. It was somewhat surprising to find that the relationship of the caregiver to the patient (parent/family or spouse) and living together in the same home were associated with lower QoL levels whereas clinical characteristics such as illness duration or CGI were not significantly associated with QoL. These findings suggest that the proximity of the caregiver to the patient, rather than the severity of the patient's illness, have a greater impact on the caregiver's experience. 4.1. Strengths and limitations 1) This was a cross-sectional study that precludes drawing causal inferences. Future studies should focus on the longitudinal relationship between caregivers' and patients' characteristics and QoL. The use of qualitative methods might have enhanced the interpretation of these findings. 2) The representativeness of the sample should be questioned. Because our study was conducted in a large French teaching hospital, our findings may not be extrapolated. Patients with greater severity of illness are more likely to be treated in our hospital; consequently, they may not represent a balanced sample of the population with affective disorders. 3) Several patient measures, such as current mood state, the number of days well in the previous year, and comorbidities, were not analysed in the present study. Further studies should integrate these parameters to examine the role of these characteristics in the QoL of caregivers. 5. Conclusion This work confirms that the QoL of caregivers of individuals with affective disorders is seriously impaired, mainly by altered psychological or mental well-being and social life. QoL adds interesting and complementary information to the information that has traditionally been collected (burden, stress, perceived stigma). QoL is oriented towards a more global view of individuals with affective disorders and their caregivers, and it may help in identifying specific needs that should be addressed in support groups for caregivers. Role of funding source None. Conflict of interest The authors have declared that there are no conflicts of interest in relation to the subject of this study. Acknowledgements Our thanks to all of the patients and staff who helped with the study: Remy Dumas, Delphine Drai, Claire Fajula, Emmanuel Richard, Romain Padovani, Jean-Claude Samuelian, Raoul Belzeaux, François Simon Wawrzyniak, and Genevieve Paillisse.
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