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Schizophrenia Research xxx (2010) xxx–xxx
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The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument to measure quality of life of caregivers of individuals with schizophrenia
R. Richieri a, L. Boyer b,⁎, G. Reine c, A. Loundou d, P. Auquier e, C. Lançon a,e, M.C. Simeoni e
a b c d e
Department of Psychiatry, Sainte-Marguerite University Hospital, Assistance Publique-Hôpitaux de Marseille, 13009 Marseille, France Department of Public Health, La Timone University Hospital, Assistance Publique-Hôpitaux de Marseille, 13005 Marseille, France Department of Psychiatry, Toulon-La Seyne Hospital, 83000 Toulon, France Department of Clinical Research, University Hospital, Assistance Publique-Hôpitaux de Marseille, 13005 Marseille, France Department of Public Health, EA 3279 Research Unit, University Hospital, Assistance Publique-Hôpitaux de Marseille, 13005 Marseille, France
a r t i c l e
i n f o
a b s t r a c t
Objective: This study aims to validate a self-administered, multidimensional QoL instrument based on the point of view of caregivers of individuals with schizophrenia. Methods: Data were collected through the departments of six psychiatric hospitals in France (n = 246). The item reduction and validation processes were based on both item response theory and classical test theory. Results: The S-CGQoL contains 25 items describing seven dimensions (Psychological and Physical Well-Being; Psychological Burden and Daily Life; Relationships with Spouse; Relationships with Psychiatric Team; Relationships with Family; Relationships with Friends; and Material Burden). The seven-factor structure accounted for 74.4% of the total variance. Internal consistency was satisfactory; Cronbach's alpha coefﬁcients ranged from 0.79 to 0.92 in the whole sample. The scalability was satisfactory, with INFIT statistics falling within an acceptable range. In addition, the results conﬁrmed the absence of DIF and supported the invariance of the item calibrations. Conclusion: The S-CGQoL is a self-administered QoL instrument that presents satisfactory psychometric properties and can be completed in 5 min, thereby fulﬁlling the goal of brevity sought in research and clinical practice. © 2010 Elsevier B.V. All rights reserved.
Article history: Received 25 May 2010 Received in revised form 24 August 2010 Accepted 25 August 2010 Available online xxxx Keywords: Quality of life Schizophrenia Caregiver Questionnaire Validation
1. Introduction Schizophrenia is a disabling and severe psychiatric disorder with either episodic or continuous evolution that can result in physical, psychological and social problems related to both the disease and the potential side effects of its treatment (Green et al., 2000; Kasckow et al., 2001; Kurtz et al., 2008; Lehman, 1983; Reine et al., 2005). Schizophrenia also affects the
⁎ Corresponding author. Department of Public Health, La Timone University Hospital, 264 Rue Saint Pierre, 13855 Marseille cedex 05, France. Tel.: +33 686936276; fax: +33 491433516. E-mail address: firstname.lastname@example.org (L. Boyer). 0920-9964/$ – see front matter © 2010 Elsevier B.V. All rights reserved. doi:10.1016/j.schres.2010.08.037
functioning of family caregivers, especially because the caregivers have assumed functions that were performed in the past by psychiatric institutions (Caqueo-Urizar et al., 2009; Ochoa et al., 2008; Reine et al., 2003b). The impact of caregiving on caregivers' quality of life (QoL) is important (Caqueo-Urizar et al., 2009; Martens and Addington, 2001). Caregivers of individuals with schizophrenia have reported reduced QoL, especially when experiencing a signiﬁcant burden (Glozman, 2004; Li et al., 2007), restricted roles and activities, and increased psychosomatic, anxious, or depressive symptoms (Awad and Voruganti, 2008; Schulz and Beach, 1999). Caregivers' negative experience may affect their ability to care for the patients. This is an important concern because
Please cite this article as: Richieri, R., et al., The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument..., Schizophr. Res. (2010), doi:10.1016/j.schres.2010.08.037
. based on the Positive and Negative Syndrome Scale (PANSS). according to the DSM-IV criteria (APA. Caregivers of individuals with schizophrenia have received signiﬁcant attention in the past few years. 2007. 2007. Interviews were conducted until no new ideas emerged in the content analysis performed in real time. 2009. 2008). 2003b. Although studies have been conducted on speciﬁc issues in caregiving.b)... 1996)...1016/j.. Mental Health (MH). Methods mother or a father. doi:10. When the patient identiﬁed a The development of the S-CGQoL occurred in two phases: qualitative and quantitative. Bodily Pain (BP). Magliano et al. and a validated generic QoL questionnaire: the Short Form 36 (SF-36) (Leplege et al. 1996. according to DSM-IV. 2. Several studies have shown that a lack of family involvement in treatment planning is associated with problems in treatment adherence (Ahn et al. and General Health (GH). Richieri et al. 1992). Provencher and Mueser. Velligan et al.. 2. Socio-demographic characteristics of the caregivers: gender. (2) being the mother or the father of the patient.. type of schizophrenia. Ware and Sherbourne. semi-structured interviews performed by a trained interviewer (Juniper et al. Social Functioning (SF). Subjects Data were collected from the departments of six psychiatric hospitals in France: Ajaccio (one hospital). self-administered QoL questionnaire. we asked the patient if we could contact the caregiver. Brieﬂy. Data collection The data collected included the following: 1. coping strategies (Magliano et al. Role-Physical Problems (RPP).. van der Gaag et al.. based on the theory of expectation. personnel from each center identiﬁed inpatients and outpatients who had been given a diagnosis of schizophrenia and were between 18 and 64 years old. 1997) could constitute an innovative area of research in schizophrenia. 2003b). The inclusion criteria for the caregiver were as follows: (1) having a family member with a diagnosis of schizophrenia or schizoaffective disorder. the following information was collected via self-report questionnaires (completed by the caregivers) or routine clinical interview (conducted with the patient by a psychiatrist). Questionnaire development 2. Bordeaux (one). The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument. 2007.. 1998. assessing and preserving caregivers' QoL is a noteworthy issue both for the caregivers themselves and indirectly for patients' health. The interviews have been described elsewhere (Lançon et al. disorganization symptoms. 2003b). 3.. up to a total of 33 (Reine et al. preserving caregivers' health and their ability to care. little has been done to explore QoL among caregivers of individuals with schizophrenia. Roncone et al.. 1999). 2001) and opinions on the causes and consequences of mental disorders (Kallert and Nitsche. which contains ﬁve subscales: positive symptoms. and emotional distress (Kay et al. and developing new care strategies..3.1. La Seyne sur Mer (one). Caregivers' interviews were also used to determine the wording in question stems and the range of response options.schres. WMA. 2. Szmukler et al.. age. and Paris (one).. Socio-demographic and clinical characteristics of the individuals with schizophrenia: age at the onset of the disease. Vitality (VIT). 1986. 1996). (4) being 18 years of age or older. Schizophr. continuity of care. (3) being identiﬁed by the individual with schizophrenia as the main caregiver.. Valenstein et al. An exploration and evaluation of the caregivers' QoL could be useful in improving patients' health and QoL... 1988)..037 . The two phases were conducted with different samples.2 R.. 2004). 1994). 2008. Cooper et al.. 2000. Each patient was asked by a medical or nursing staff to name his or her main caregiver. SF-36 is a generic. number of children. and employment status.08. Procedure For a period of one month. 2001). 2008. / Schizophrenia Research xxx (2010) xxx–xxx involvement of family caregivers is essential for optimal treatment of patients by ensuring treatment compliance. 2009). 1994). This project was conducted in accordance with the Declaration of Helsinki and French Good Clinical Practices (CNIL. We present the results of the development and the validation of a self-administered. Most of the research is focused on caregivers' burden (Levene et al. QoL questionnaires: The self-administered survey materials that were completed by the caregivers included the tested QoL questionnaire (S-CGQoL). Interviews were recorded and entirely Please cite this article as: Richieri. 1986) occurred during the quantitative phase. Therefore. Rosen et al. 1997. A self-administered instrument based on the caregivers' point of view and anchored in an explicit conceptual approach (McKenna.. Each dimension is scored within a range of 0 (low QoL level) to 100 (high QoL level).. 2006a. When the patient agreed and when the caregiver met the inclusion criteria. 2. caregiving (Joyce et al. Item generation: a qualitative approach Item generation occurred in two steps. R. 2000. and no QoL measurement scale has been speciﬁcally developed for use with this population (Caqueo-Urizar et al.. Li et al. and item reduction and the validation process (Crocker and Algina. consisting of 36 items describing 8 dimensions: Physical Functioning (PF). 2. which is one of the most widely used generic quality of life scales for caregivers of individuals with schizophrenia. Reine et al.4. et al. 2004. Role-Emotional Problems (REP). psychotic symptoms.. excitement.. First. negative symptoms. 1996. and social support (Reine et al. Schene et al. interviews addressed the impact of the disease on caregivers' QoL. Item generation occurred during the qualitative phase. (2010). Martens and Addington. 1989. multidimensional QoL instrument based on the point of view of caregivers of individuals with schizophrenia: the Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL).1.4. 2. the content of the questionnaire was derived from face-to-face. Marseille (two). Res.2010. which deﬁnes quality of life as the discrepancy between expectations and current life experience (Calman.2. (5) giving informed consent to participate in the study and (6) being a native French speaker.
“3—Sometimes/ Somewhat”. The scalability of each of the dimension scales was assessed by the pattern of item goodness-of-ﬁt statistics (INFIT). The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument. 20 caregivers and 20 members of the French National Union of Friends and Families of Mentally Ill Persons (UNAFAM) were asked to comment on any aspect of the questionnaire (i. doi:10. 1997). the initial interviews with the caregivers guaranteed that the questionnaire was a true reﬂection of the caregivers' experience and consequently ensured content validity. Several hypotheses were formulated: the S-CGQoL dimension scores (1) should differ according to socio-demographic characteristics of the caregivers: mothers.. Items were kept in their respective dimensions if they revealed loadings greater than 0. The comparisons of means were performed using Student's t-test or analysis of variance (ANOVA). misunderstood or rarely answered were withheld or reworded. Finally. The more meaningful and psychometrically sound solution was kept to produce the ﬁnal version of the S-CGQoL questionnaire. (2010). Removal of the items was discussed with regard to both metrological properties and impact on the ﬁnal instrument's content. “5—Always/Very much” and “6— Not applicable”.2010. The ﬂoor effect refers to the proportion of individuals who have the worst possible QoL score.. Among the 265 patients who identiﬁed their mother or father. an extension of the Rasch model for Likert-type responses. Consequently. employment status. by testing the associations (comparisons of means or correlations) between the S-CGQoL scores and socio-demographic variables (gender. 3. 1993). 1979). wording. In addition. Schizophr.. R. Internal consistency reliability refers to the strength of the correlation between items within each domain of the questionnaire and between all items in the questionnaire. followed by a Bonferonni post hoc analysis. Construct validity deﬁnes the construct to be measured by the instrument and assesses the internal structure of its components and the theoretical relationship of its item and subscale scores.1016/j. Results Only the results of the ﬁnal psychometric validation phase are reported in order to avoid confusion with intermediate development versions of the questionnaire.. Item discriminant validity was assessed by determining the extent to which items correlated more highly with the dimensions that they were hypothesised to represent than they did with others (Campbell and Fiske. Eigenvalues greater than or equal to 1 were retained (Kaiser and Caffrey. and some aspects of external validity. 2001). younger parents and caregivers who lived alone with their child would have lower levels of QoL. Statistical approaches were based on both item response theory (van der Linden and Hambleton.0 and WINSTEP software (Wright et al. “2—Rarely/A little”. Res. 1989). 2. taking into account the items' meanings. Differential item functioning (DIF) analyses were performed to check whether all items behaved in the same way among subgroups deﬁned according to potential confounding factors: age (N= or b60 years) and gender. content. 1959).7 was expected for each dimension) (Cronbach.R. External validity was tested by studying the correlations of the S-CGQoL dimension scores with the scores of the SF-36. Floor and ceiling effects were reported to assess the skewness of the response distribution.6%).e. 3. reliability.1. (2) QoL should be negatively correlated with the severity of the schizophrenia.7 and 1. 19 had caregivers who refused to participate in the study. The second round of interviews with caregivers and members of UNAFAM ensured face validity. 1999). Sixty-six questions were identiﬁed from these interviews. our sample consisted of Please cite this article as: Richieri. it causes a relative lack of sensitivity in the questionnaire. A high ﬂoor or ceiling effect limits the value of a tool because individuals falling within the highest and lowest ranges cannot receive better or worse scores than they have presently. / Schizophrenia Research xxx (2010) xxx–xxx 3 transcribed. was used. 82 did not identify a mother or a father as the main caregiver (23. 1951). age. Richieri et al.2. Second.037 . Therefore.2 ensures that all items of the scale tend to measure the same concept (Wright and Stone. 1997) and classical test theory.4. Data analyses were performed using SPSS 15. Item reduction and validation of the S-CGQoL: a quantitative approach The item reduction process took into account both the results of statistical analyses and the expertise of the steering committee.. leading to a preliminary questionnaire that comprised 59 items. 1965). It was assessed using principal component factor analyses with varimax rotation (Nunnaly and Bernstein. The partial credit model. The unidimensionality of each dimension was assessed using Rasch analyses (van der Linden and Hambleton. The ﬁnal version of the S-CGQoL was then tested for construct validity. and age at the onset of the disease) or clinical features (type of schizophrenia and PANSS). et al. Item internal consistency was assessed by correlating each item with its scale (corrected for overlap) using Pearson's coefﬁcient (a level of 0. inter-dimension correlations were examined using Pearson's and polychoric coefﬁcients. It was carried out by calculating the Cronbach's alpha coefﬁcient (a coefﬁcient of at least 0. Sample characteristics Of the 347 patients who were screened during the study period. Items that were ambiguous. Content analysis was performed by three members of the steering committee who were skilled in textual analysis and complemented by a computerised textual analysis (Alceste® software) (Kaid and Wadsworth.. These items were answered using a six-point Likert scale. “4—Often/A lot”.schres. A Rasch rating scale model was used to identify invariance of item calibrations (a form of DIF) (Zumbo. a value of INFIT between 0.4. The underlying assumption was that dimension scores of SCGQoL would be more correlated with scores of similar dimensions from SF-36 than they would be with dissimilar ones.. and the ceiling effect refers to the proportion with the best score possible. deﬁned as “1—Never/Not at all”.08. Another aspect of validity was examined using the known-group approach. 1994) in order to determine the ﬁnal structure and the number of independent dimensions. number of children. response choices) that they felt was irrelevant or merited improvement.4 is recommended for supporting item-internal consistency (Carey and Seibert.
All dimension scores were linearly transformed to a 0 to 100 scale. (5) giving informed consent to participate in the study and (6) being a native French speaker.5 Positive factor 15. 3.3.3 18. and. The characteristics of the caregivers and individuals with schizophrenia are presented in Table 1. The results also conﬁrmed the absence of DIF according to gender or age and supported the invariance of the item calibrations.4 Disorganization symptoms 11. mean ± SD Total PANSS (range from 30 to 210) 71. one of Table 1 Sociodemographic and clinical characteristics of caregivers and individuals with schizophrenia (n = 246). (2010).6 years (S. 6.1016/j.037 . the S-CGQoL index.5 4. Item internal consistency was satisfactory for all dimensions. mean ± SD Number of children (N 1) Employment status (unemployed) 165 60. as all items showed a good ﬁt to the Rasch model within each dimension.8 41. Caregiver enrollment.6 4.9 Negative factor 19.4% of the total variance. except for Relationships with Spouse. Each dimension was named according to its constituent items.6%).5 84. Of the 246 caregivers.schres. a score for each of the dimensions was obtained by computing the mean of the item scores on the dimension. Construct validity and reliability (Table 2) The iterative process of item selection resulted in a ﬁnal version comprised of 25 items describing seven dimensions (see Appendix A). R.4 R. (2) being the mother or the father. / Schizophrenia Research xxx (2010) xxx–xxx Fig. and MB: Material Burden (3 items) (Table 2).8 Living situation (MD = 5) With one parent 55 With two parents 101 Independent 85 PANSS score.1 9.6 62. 1).2010. (3) being identiﬁed by the individual with schizophrenia as the main caregiver.9 3. mean ± SD 21.8 8.8 6. Richieri et al.08. with 100 indicating the best possible level of QoL and 0 the worst. The seven-factor structure accounted for 74. Individuals with schizophrenia Age at onset of illness (years).1% was mothers. Scoring For each individual..4 6. MD: missing data. as follows: PsPhW: Psychological and Physical Well-Being (5 items). according to the DSM-IV criteria. A global QoL index.7 Diagnosis of schizophrenia subtypes and schizoaffective disorder Paranoid 153 Undifferentiated 32 Disorganised 8 Residual 43 Schizoaffective disorder 10 SD: standard deviation. Res.2.6 22. PsBDL: Psychological Burden and Daily Life (7 items). = 9. 246 caregivers (70. for 22. 1. the mean of non-missing items was substituted for the missing items. The overall scalability was satisfactory.D.4 3. If fewer than one half of the items were missing.3 17.5 Excitement 8.6 208 154 % 67.8 Illness duration 9.. The analytical sample consisted of caregivers: (1) having a family member with a diagnosis of schizophrenia or schizoaffective disorder.. The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument. the mean age was 60. RS: Relationships with Spouse (3 items).5) and 67. A majority of the caregivers were unemployed (62..9 35.6 the two parents lived alone with their child.2 13.6 62.9%) (Fig. doi:10.8%. 3. Schizophr. was computed as the mean of the individual dimensions. RFa: Relationships with Family (2 items). et al. with no items showing an INFIT statistic outside of the acceptable range. RFr: Relationships with Friends (2 items). RPT: Relationships with Psychiatric Team (3 items).3 Emotional distress 7.. n Caregivers Gender (female) Age (years).0 3. (4) being 18 years of age or older.1 Please cite this article as: Richieri.
93–0.24 ⁎⁎ MB 0. PsPhW PF SF RPP REP MH VIT BP GH 0.95 for each item. Please cite this article as: Richieri.4 7. RPT: Relationships with Psychiatric Team.13 0. ranging from 0.09 0.11 0.53 ⁎⁎ 0. The deletion of any of the 25 items did not increase the internal consistency of any of the 7 dimensions.00–0. PsPhW–RPP.2 11.6) vs.83–0. Three S-CGQoL dimension scores (PsBDL. and Material Burden (MB)—were globally uncorrelated or weakly correlated with the dimensions of SF-36 (Table 3).14–0. (2010). S-CGQoL scores.7 (11.34 ⁎⁎ RS 0.9 5.98 0.9 (22.56 0.79 0.92–0.2010.64–0.29 ⁎⁎ Index 0.1016/j. S-CGQoL dimension scores were signiﬁcantly and negatively correlated with the PANSS total (PsPhW.9 (20.4) 69.04 0. MB Table 3 Spearman's correlations between S-CGQoL scores and short-form 36 scores (n = 246). / Schizophrenia Research xxx (2010) xxx–xxx 5 Table 2 Dimension scale characteristics: item-internal consistency (IIC). RS and RFr) produced signiﬁcant levels of correlation with the age of the caregiver (respectively.98–0.27 ⁎⁎ 0.42 NA c 0.25 ⁎⁎ 0.70–1. ⁎⁎ p b 0.14 and −0.00 0.02 −0.66 ⁎⁎ 0. However.4 10. Caregivers who reported that they lived alone with the individual with schizophrenia reported a signiﬁcantly lower QoL than those who were part of a couple or for whom the individual with schizophrenia lived independently (RS.80 0. c Not applicable. RFa and the index).29 0.5 (21.00–0.64 to 0.46 ⁎⁎ 0.14 ⁎ 0. Res.9 11.12 RPT 0.08.87 MV (%) Floor (%) Ceiling (%) Alpha a INFIT b Min–max 0.4 0.13 ⁎ −0. RFa: Relationships with Family. only two dimensions of the S-CGQoL (PsPhW. ranging from 0 to 100 (with 100 indicating best quality of life). with Psychiatric Team (RPT).41 0. RS: Relationships with Spouse. PsBDL: Psychological Burden and Daily Life.42 ⁎⁎ 0.07 0. PsPhW–MH. Unemployed caregivers showed a signiﬁcantly higher level of RS and a lower level of RFr. and RS 65. 77.70 ⁎⁎ 0.92 0. Rasch statistics (INFIT). Index. Higher QoL levels of caregivers were globally associated with lower levels of severity of schizophrenia.0) vs. PsPhW–VIT.15 ⁎ 0. SF: Social Functioning.07 0. intra-class correlation coefﬁcient (ICC) of the S-CGQoL dimension scores and global index mean (SD) (n = 246).20.06 0. doi:10. Schizophr. with Friends (RFr).60–1.19 NA c S-CGQoL—PsPhW: Psychological and Physical Well-being.20 0.7) 69.18 ⁎⁎ 0.schres. PsPhW–SF.80–0.1 15.43 ⁎⁎ 0.3 (SD = 19.00–0.37 ⁎⁎ 0. VIT: Vitality. ﬂoor effect (Floor). The correlation of each item with its associated dimension was higher than its correlation with the other dimensions (item discriminant validity).4) 62.1 (SD = 23. ranging from 0 to 100 (with 100 indicating best quality of life)..4) 0.13 0.4 (SD= 17.15 ⁎ 0.12 0.037 .06–0.92 0.8) 62. MB: Material Burden.9 (18.28 ⁎⁎ 0.00–0. with Family (RFa). et al.20 ⁎⁎ RFr 0. 3. MB: Material Burden.18 ⁎⁎ 0. The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument.18 ⁎⁎ 0. 59.3 0.78 0.52 0.85 0.09 0.7 15.34 0.95 0.04 0.41 ⁎⁎ 0.07 RFa 0. RPP: Role—Physical Problems.42)..15 ⁎ 0.78–1.8 10. PsBDL–SF.92 0. and PsBDL–MH.01. REP: Role—Emotional Problems. percentage of missing values (%MV).18 0.01–0.74–0.5 4. S-CGQoL scores.93–0. and GH: General Health.10 0.17–0. RPT: Relationships with Psychiatric Team. Index. 0. R.75–1.05.79 to 0.33 ⁎⁎ 0. S-CGQoL Mean (SD) IIC Min–max PsPhW PsBDL RS RPT RFa RFr MB Index 53. 0.06 0.. p b 0.4 7.20). PsPhW– GH. a Cronbach's alpha.002. RS... Cronbach's alpha coefﬁcients ranged from 0.7 8.7 5. External validity The S-CGQoL index was signiﬁcantly correlated with all SF-36 dimension scores (rs = 0.29 ⁎⁎ 0.11 0.23 ⁎⁎ 0.94 0.4).96–0.03 0.52 ⁎⁎ PsBDL 0.9) 63. RS: Relationships with Spouse. Cronbach's Alpha (Alpha).3 19. global S-CGQoL score. ⁎ p b 0. male) showed signiﬁcant differences for two dimensions: PsPhW 51.1 7. item-discriminant validity (IDV).92 in the whole sample.37 ⁎⁎ 0.87 0. Caregivers of individuals with paranoid schizophrenia reported lower S-CGQoL scores (RPT and index) when compared to caregivers of individuals with a disorganized form of schizophrenia (Table 4).91 0. indicating high internal consistency.99 0. RFa: Relationships with Family. RFr: Relationships with Friends.23 ⁎⁎ 0.42 ⁎⁎ S-CGQoL—PsPhW: Psychological and Physical Well-being.43 ⁎⁎ 0. The age of the patient at the onset of the disease was signiﬁcantly correlated with three dimensions (PsBDL.0).9 9.17 ⁎ 0.9 45.0 14.30 0.32 ⁎⁎ 0. RFr.7 13.7 (SD=17. RFa) and the index (rs = 0. the speciﬁc dimensions of the S-CGQoL—Relationships with Spouse (RS).4. ceiling effect (Ceiling).5) 62. b Rasch statistics.37 ⁎⁎ 0. On the contrary. SF-36—PF: Physical Functioning.78–1. PsBDL: Psychological Burden and Daily Life.13 0.23 ⁎⁎ 0.45 ⁎⁎ 0.24).1 (22.7) 57. Comparisons by gender (female vs.7 10.18 ⁎⁎ 0. BP: Bodily Pain.0 (20.0001. Richieri et al.07–0.06 0.14 ⁎ 0. A higher number of children were associated with a higher S-CGQoL score for (MB) and the overall index. MH: Mental Health.08 0.17 ⁎ 0.88 NA c IDV Min–max 0.88 0.94 0. global S-CGQoL score.R.3 4.39 0. p = 0.0 31.11 0.13 ⁎ 0.5 8. RFr: Relationships with Friends. PsBDL) showed medium to high correlations with dimension scores of the SF-36 assessing mental and physical well-being: PsPhW–PF.37 ⁎⁎ 0.8 (16.06 0.
/ Schizophrenia Research xxx (2010) xxx–xxx Table 4 Comparisons of S-CGQoL score means (SD) according to gender.631 46. no signiﬁcant correlation was found with excitement or disorganization symptom scores of the PANSS (Table 5).8) 0.4 (12.05.01.0 (22.168 RFr 64.2) 70.2 (22.09 −0.103 62.08 −0.3) 73.. RFa: Relationships with Family.2) p value 0.8 (19.6) 70.07 −0.1) 60.527 67.4) 82.9) 0.4) 62.06 −0.7 (8.084 57.20 ⁎⁎ MB 0.4 (20.5) 63..147 Number of children of caregiver 1 51.0) 0.2010.5 (17..20 ⁎⁎ RS 0.6 R. and PANSS score of the patient (n = 246). PsBDL: Psychological Burden and Daily Life.529 Living situation of the individual with schizophrenia One parent 55.04 −0. employment status of the caregiver.6 (25.9) 83.5) Independent 55.0 (17.19 ⁎ −0.7) 0.7) 63.5) 0.17 ⁎ −0.1 (17.2) 58. ranging from 0 to 100 (with 100 indicating best quality of life).4 (18.5) 0. Values signiﬁcant at the 5% level are marked in bold.3) 0. RFa: Relationships with Family. S-CGQoL scores.14 ⁎ RPT −0.074 RS 65. However.4) 60.1 (23.6) 0.050 Subtypes of schizophrenia diagnosis and schizoaffective disorder Paranoid 52.0) 77.3 (9.4 (21.6 (18. ⁎ p b 0.0 (19.0) 64.7 (20.7 (20.5 (18.010 56.8) 0.10 RFr −0.1) 62. caregiver age at onset of illness.2) 73.15 ⁎ −0.8 (15. 1998).6 (19. and Index).09 0. number of children.8) 65.9 (14.1 (23.11 −0.2) 0.7 (23.5.1) 59.6) p value 0.1) Residual 59. PsBDL: Psychological Burden and Daily Life.11 −0.4 (11.8) 64.0) 61.7) b 0.4) 64. rather than on family caregivers (Carter et al.2) 0.4 and 7.22 ⁎ S-CGQoL—PsPhW: Psychological and Physical Well-being.898 67.5) 66.7) 72.06 −0. In contrast.08. RS: Relationships with Spouse.5) 69.8 (16.schres. global S-CGQoL score.634 53.8) 70.202 63.03 −0.8) 70..5) 2+ 54.10 −0.3 (21.02 −0.1 (21.04 −0.9 (17.7 (22.0 (10.0 (20.2) 0.002 PsBDL 61.0 (21. Please cite this article as: Richieri.373 65.6 (21.8) 63.1) 0.5) p value 0.037 .10 0. which is fully compatible with clinical practice.4) 0.0 (15.6 (15.00 0.08 −0.8) 70.9) 58.7) 72.5 (22.3 (20.5) 62. ranging from 0 to 100 (with 100 indicating best quality of life).1016/j.12 PsBDL 0.14 ⁎ −0.006 S-CGQoL—PsPhW: Psychological and Physical Well-being.6 (20.9 (19.08 0.6) 63.7) 0.09 0. R.05 −0.5 (20.5 (21.17 ⁎ −0.15 ⁎ −0. RS: Relationships with Spouse. caregivers are now considered to be a major Table 5 Spearman correlations of S-CGQoL scores with age.0) 62.8) 63.5) 72.5) 65.3) 0.1) Schizoaffective disorder 52.10 0.1 (20.3 (24.695 59.09 −0.3 (22.5) 57.8 (23. The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument.8 (23.5 (23. and living situation.4 (21.1 (17.6 (20.00 −0.5 (15.4) 68.6) 60.18 ⁎⁎ −0.13 ⁎ −0.1) 61.175 58.3) 63.21 ⁎⁎ −0.0) 0.5 (21. subtypes of schizophrenia diagnosis (n = 246).084 0.9) 64.6 (17.6 (23.0 (21.215 60.6) 60.5 (21.3 (18.9) Two parents 51.05 −0.4) 64.2) 0.4 (24.6 (16.2) 60.03 RFa −0.1 (20.7 (22.8 (23.7 (18.9 (10.3 (11. PsPhW Gender of caregiver Female Male p value 51. The rate of missing data was globally low: between 0.8) 80.7 (17.5 (15.0 (22.211 61.24 ⁎⁎ −0.7 (18.429 Employment status of caregiver Employed 54. RFr: Relationships with Friends..4 (11. Res.256 61.3) Unemployed 53.5) 72. Richieri et al.0001 RPT 64.853 58.0001 60. MB: Material Burden.2 (18.2 (20.6) b0.0 (10.9) 62.14 −0.5 (22.015 65.6 (21.05 −0.4 (31.09 0.23 ⁎ 0. Index.1 (19.6) 72. RPT: Relationships with Psychiatric Team.5 (19.09 −0.8 (7.06 −0.01 0. Acceptability The average completion time is expected to be less than ﬁve minutes.7) 68.7) 63.0 (20.6) 59.6 (20.01 −0.13 0.5 (11.1) 0.8) 0.6 (21.7% for the dimension scores and 19.2) 64.5) 0.1 (22. MB: Material Burden.0 (23.6 (12.023 61.5) 0.3) 65.13 0. negative (RPT) and emotional distress scores (RS and Index).9 (21.6 (16.18 ⁎ −0. ⁎⁎ p b 0.10 −0.9% for the index (Table 2).01 −0. the primary emphases in research have been on the person with the disease and on the disease process. positive (RFr and Index).4) 62. PsPhW Caregiver Age Patient Age at onset of illness Total PANSS Positive factor Negative factor Excitement Disorganization symptoms Emotional distress 0.8 (19.7) 77.8) 68. 4.010 69.1) p value 0. RFr: Relationships with Friends..0001 60.4 (17.4) 67.7) 68. et al.7) 0.7) 74.9 (20.0) 0.224 MB 68.680 Index 61.0) 0.09 Index 0.5) 78.3 (19.8) 0.7 (20.5) Undifferentiated 56.5 (21.0) b 0.2) 71.3) 74. Schizophr.09 −0. (2010).4 (14. S-CGQoL scores.8) 61.5 (20.6 (16.0 (16.00 −0.11 −0.0 (27.8 (22.13 ⁎ −0.5 (9.5) 58.6 (21.191 58.09 −0.3) 64.510 65.132 0.05 −0. In the past.1) 61. Discussion 3.9 (19.2 (19.09 −0.9) 0. Index.5 (7. RPT: Relationships with Psychiatric Team.733 63.6 (20.5 (12. doi:10.11 −0.240 0. global S-CGQoL score.2) 0.072 57.3) 0.030 58.3 (15.2 (21.09 0.4 (21.3) 0.4 (18.07 −0.079 Rfa 56.6) Disorganised 46.8) 63.
prompting discussion with the patient.08. and our results support the fact that opportunities for residential care should in principal increase family QoL (Roick et al. We also found that S-CGQoL scores were negatively correlated with the severity of psychotic symptoms (PANSS). The absence of employment can result in an investment in household duties and care for individuals with schizophrenia. Kikkert et al. One explanation is that having additional people in the household provided additional assistance in the care. 2007). Richieri et al. globally conﬁrmed our assumptions. This result makes sense. as Psychological and Physical Well-being. doi:10. especially for material burden (Li et al. caregiving. On detecting a problem or a decrease in Relationships with Psychiatric Teams. identifying the components of the questionnaire based on face-to-face interviews strengthens the content validity of the ﬁnal version of the current questionnaire. Older age was associated with a higher QoL level for the caregiver.. is known to be highly correlated Please cite this article as: Richieri.. like Relationships with Psychiatric Teams. Our results suggest that the absence of employment can improve relationships with spouse but deteriorate relationships with friends. As expected.) because of discrepancies between them and experts' point of view (Slevin et al.70). Gutierrez-Maldonado et al. to support the interpretation of the S-CGQoL scores. This result is consistent with previous studies. which may account for the progressive damage of schizophrenia in caregivers' social life (Webb et al. and they warn that focusing solely on symptom reduction and relapse prevention is insufﬁcient. 2005). 1998). coping strategies and opinions on the causes and consequences of mental disorders) are based only on the physicians' or experts' point of view. Schizophr. (2005) reported that mothers experienced the greatest burden because they were responsible for most aspects of the patients' daily care. Caqueo-Urizar et al. our proposal meets standards concerning psychometric properties. Pursuant to this. Res.. 2005. 2009).. 1996).R. Additionally. professional and social network supports represent crucial resources for reducing family burden in schizophrenia. Although it is now generally agreed that the content of QoL measures should be derived directly from relevant persons (patients. The S-CGQoL assesses signiﬁcant family factors that must be discussed when planning care for an individual with schizophrenia. (2006) reported a positive inﬂuence on adherence if professionals focus on positive aspects of medication. For Magliano et al. 2009). et al.. There is a need for improved family intervention programs that can be delivered by health services teams. (2009) suggest that the development of supporting activities for the family is an important concern. 2007). The living situation of caregivers and their patients is also an important factor associated with QoL. The focus on the different aspects of the social life (relationships with spouses. Psychological Burden and Daily Life. For example. except for the Experience of Caregiving Inventory (Szmukler et al.schres.2010. Working life was signiﬁcantly associated with QoL in our study. better coping strategies or because improvements occur in patients' symptoms (Gutierrez-Maldonado et al. Internal consistency reliabilities for the seven dimensions were shown to be high (Cronbach's alpha N 0.1016/j. Magliano et al. which often report that positive symptoms represent the greatest strain on family members (Caqueo-Urizar et al. which can rob caregivers of an extra-familial social life. supported by a high internal consistency (74. older caregiver age was associated with a lower score on the Relationships with Friends dimension. Most studies show that mothers are generally the primary caregivers and that they have a lower QoL than other types of informal caregivers (Caqueo-Urizar et al. whereas those with late-onset schizophrenia have relatively preserved cognitive functioning (Rajji et al. DIF analyses were satisfactory and constitute an interesting property rarely studied in other questionnaires.. emerged as speciﬁc concerns of caregivers of individuals with schizophrenia. 2009). explored by the use of socio-demographic and clinical characteristics. The internal structure. mainly for positive symptoms and emotional distress.037 . which includes depression symptoms.. some dimensions of the S-CGQoL are similar to those referred to.. 1988). Second. enhancing insight. family. However. and friends) also permits a precise analytical description of the social dimension that is not often assessed in other questionnaires. some dimensions.. we found that caregivers with more than one child reported higher QoL. women had lower QoL than men within the dimensions of psychological well-being. and fostering a positive therapeutic relationship with patients and caregivers. (2003). This result is concordant with the majority of studies that found that older caregivers perceive less burden.... in both the literature and existing tools. caregivers. On the contrary. etc. (2010). providing a reliable and valid instrument for the family caregivers of individuals with schizophrenia is necessary. R. the majority of available questionnaires for caregivers of individuals with schizophrenia (on burden.. emotional distress. We found a positive association between QoL and caregivers' age for two dimensions: PsBDL and RS. and Material Burden. Another result related to the age of the patient at the onset of the disease supports the external validity of our study. / Schizophrenia Research xxx (2010) xxx–xxx 7 component in delivering an integral service to individuals with schizophrenia and their families. The content of the S-CGQoL encompasses experiences of great importance to patients and is substantially different from other generic QoL or burden instruments. This ﬁnding supports the view that severity of the disease process is associated with different ages of onset.. External validity.4% of the total variance). physical well-being and relationship with spouse. conﬁrmed that caregivers' QoL is a multidimensional concept. either because they have greater tolerance or resignation. We can speculate that responses to S-CGQoL are comparable according to the responders' characteristics. This “extra information” can be gained as a result of the QoL measure. the clinician will intervene in some way to address this. The low correlations with the SF-36 show that the S-CGQoL shares certain common themes with generic QoL instruments but not to a degree that would suggest that SCGQoL measures the same elements. The goals of the study were to test the validity and reliability of the instrument's internal structure and to provide a ﬁrst assessment of its external validity. In the same way. The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument. First. Looking at the inﬂuence of the number of children on caregivers' QoL. as individuals with youthonset schizophrenia have severe cognitive deﬁcits..
The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument.7% for the seven dimensions. Schizophr. et al. It would be important to explore the reproducibility of the current results and their sensitivity to change. the SCGQoL adds interesting information that is oriented toward a more global service to individuals with schizophrenia and their families. soutenu(e) par votre conjoint? 14 été écouté. Conﬂict of interest The authors report no conﬂict of interest. odd jobs…)? been embarrassed to leave your child to attend your day or professional life? had the feeling that you didn't devote enough time to the rest of your family? had the feeling that you weren't free? had the feeling that you led a day-to-day existence? had difﬁculty in making professional or personal plans? Dimensions PsPhW PsPhW PsPhW PsPhW PsPhW PsBDL 7 PsBDL 8 été gêné de laisser votre enfant pour assumer vos tâches de la vie quotidienne ou professionnelles? 9 eu le sentiment de ne pas consacrer le temps nécessaire au reste de votre famille? 10 eu le sentiment de manquer de liberté? 11 eu le sentiment de vivre au jour le jour? 12 eu des difﬁcultés à faire des projets professionnels ou personnels? 13 été aidé(e). which are currently the most widely used with caregivers of individuals with schizophrenia. jardinage. All authors contributed to and approved the ﬁnal manuscript. However. the acceptability of S-CGQoL is good. supported par votre famille? by your family? RS RS RS RPT RPT RPT RFa Please cite this article as: Richieri. children and other relatives may experience unique impairments in QoL. Rather. Our approach provides an original. Second. burnt-out? lacked energy? been tired.. which does not encompass the whole experience of patients and their caregivers. between 0. Finally. Limitations and further development Several limitations must be noted.4 and 7.. valid and valuable tool that may be useful in routine practice and clinical research. R. including spouses. Res. 2003a). which will facilitate its use in research and clinical practice. shopping... Finally. compris(e) been listened to. stressing the particular interest of relying on a QoL measurement to complement the clinical approach.1. inﬁrmières…)? and nurses? été aidé(e). inquiet? dû renoncer à des choses qui vous tenaient à cœur? dû diminuer le temps réservé à vos loisirs (sorties. with the QoL of individuals with schizophrenia (Reine et al.037 . par les soignants understood by doctors (médecins. This may explain the correlation between emotional distress and the QoL of caregivers. Appendix A.8 R. MCS and PA managed the statistical analysis. usé? manqué d'énergie? été physiquement fatigué. déprimé? été moralement fatigué.2010. who may be affected by the well-being of individuals with schizophrenia. / Schizophrenia Research xxx (2010) xxx–xxx AL. caregiving or opinion instruments.. 18 19 been helped. gardening. supported by your spouse? been listened to. doctors and nurses? inﬁrmières…)? été aidé(e). caregiving and opinions. the sample may not be representative of the entire population of caregivers of individuals with schizophrenia. 4. worried? had to give up doing things that you were very keen to do? had to reduce the amount of time devoted to your leisure activities (outings. Nonetheless. It would be interesting to investigate differences in QoL impairment between caregivers from these various categories. understood by your spouse? eu une vie sentimentale had a satisfying et sexuelle satisfaisante? emotional and sexual life? été écouté(e). spouses. First. LB. This property is of major interest for the follow-up of caregivers and patients in clinical practice and for psychosocial program researches. compris(e) par votre conjoint? 15 PsBDL PsBDL PsBDL PsBDL PsBDL 16 17 Role of Funding Source None. siblings and children of individuals with schizophrenia. These correlations were moderate in strength. worn-out? felt anxious. RR and LB managed the literature searches and analyses. Conclusion The S-CGQoL is not intended to replace available questionnaires on burden. doi:10.08. All authors designed the study and wrote the protocol. it is necessary to reinforce external validity by studying the relationships between S-CGQoL and burden. The average completion time is expected to be around ﬁve minutes. inﬁrmières…)? been satisﬁed with été satisfait(e) des informations données par information given by les soignants (médecins. depressed? felt overworked. reliability and validity of S-CGQoL are evidenced by our results. 5. The psychometric properties need to be studied in a wider population. according to the usual parameters. shopping. usé? été angoissé. siblings. bricolage. (2010). this limitation of the current work is moderated by the fact that parents represent the majority of caregivers for individuals with schizophrenia. Acknowledgements None. List of the 25 S-CGQoL items French items Au cours des 12 derniers mois. the reproducibility of these results and their sensibility to change should be explored in future studies.schres. soutenu(e) been helped.. Further work is needed to test our questionnaire's strengths and weaknesses in various national and cultural contexts. Contributors RR and LB wrote the manuscript..1016/j..)? Item general meaning For the last 12 months. soutenu(e) been helped. Richieri et al. Indeed. The rate of missing data was low. have you… felt sad. avez-vous… 1 2 3 4 5 6 été triste. supported par les soignants by doctors and nurses? (médecins.
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