schizo caregiver qol

7/31/2019 Schizo Caregiver QOL

http://slidepdf.com/reader/full/schizo-caregiver-qol 1/10

The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL):Development and validation of an instrument to measure quality of lifeof 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 Department of Psychiatry, Sainte-Marguerite University Hospital, Assistance Publique-Hôpitaux de Marseille, 13009 Marseille, Franceb Department of Public Health, La Timone University Hospital, Assistance Publique-Hôpitaux de Marseille, 13005 Marseille, Francec Department of Psychiatry, Toulon-La Seyne Hospital, 83000 Toulon, Franced

Department of Clinical Research, University Hospital, Assistance Publique-Hôpitaux de Marseille, 13005 Marseille, Francee 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

Article history:

Received 25 May 2010

Received in revised form 24 August 2010

Accepted 25 August 2010

Available online xxxx

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 coef ficients 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.

Keywords:

Quality of life

SchizophreniaCaregiver

Questionnaire

Validation

1. Introduction

Schizophrenia is a disabling and severe psychiatric disorderwith either episodic or continuous evolution that can result inphysical, psychological and social problems related to both thedisease and the potential side effects of its treatment (Green etal., 2000; Kasckow et al., 2001; Kurtz et al., 2008; Lehman,1983; Reine et al., 2005). Schizophrenia also affects the

functioning of family caregivers, especially because the

caregivers have assumed functions that were performed inthe 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 reportedreduced QoL, especially when experiencing a significantburden (Glozman, 2004; Li et al., 2007), restricted roles andactivities, and increased psychosomatic, anxious, or depressivesymptoms (Awad and Voruganti, 2008; Schulz and Beach,1999). Caregivers' negative experience may affect their abilityto care for the patients. This is an important concern because

Schizophrenia Research xxx (2010) xxx–xxx

⁎ 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: [email protected] (L. Boyer).

SCHRES-04393; No of Pages 10

0920-9964/$ – see front matter © 2010 Elsevier B.V. All rights reserved.doi:10.1016/j.schres.2010.08.037

Contents lists available at ScienceDirect

Schizophrenia Research

j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / s c h r e s

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

http://dx.doi.org/10.1016/j.schres.2010.08.037



mailto:[email protected]


http://www.sciencedirect.com/science/journal/09209964



http://www.sciencedirect.com/science/journal/09209964

http://localhost/var/www/apps/conversion/tmp/scratch_4/Unlabelled%20image


http://localhost/var/www/apps/conversion/tmp/scratch_4/Unlabelled%20image





involvement of family caregivers is essential for optimaltreatment of patients by ensuring treatment compliance,continuity of care, and social support (Reine et al., 2003b;Velligan et al., 2009). Several studies have shown that a lack of family involvement in treatment planning is associated withproblems in treatment adherence (Ahn et al., 2008; Cooper etal., 2007; Valenstein et al., 2004). Therefore, assessing andpreserving caregivers' QoL is a noteworthy issue both for thecaregivers themselves and indirectly for patients' health.

Caregivers of individuals with schizophrenia have re-ceived significant attention in the past few years. Most of theresearch is focused on caregivers' burden (Levene et al., 1996;Provencher and Mueser, 1997; Schene et al., 1994), caregiv-ing ( Joyce et al., 2000; Szmukler et al., 1996), copingstrategies (Magliano et al., 1996; Roncone et al., 2007;Rosen et al., 1989, 2001) and opinions on the causes andconsequences of mental disorders (Kallert and Nitsche, 2008;Magliano et al., 1999). Although studies have been conductedon specific issues in caregiving, little has been done to exploreQoL among caregivers of individuals with schizophrenia, and

no QoL measurement scale has been specifi

cally developedfor use with this population (Caqueo-Urizar et al., 2009; Liet al., 2007; Martens and Addington, 2001). A self-adminis-tered instrument based on the caregivers' point of view andanchored in an explicit conceptual approach (McKenna,1997) could constitute an innovative area of research inschizophrenia. An exploration and evaluation of the care-givers' QoL could be useful in improving patients' health andQoL, preserving caregivers' health and their ability to care,and developing new care strategies.

We present the results of the development and thevalidation of a self-administered, multidimensional QoL instrument based on the point of view of caregivers of

individuals with schizophrenia: the Schizophrenia CaregiverQuality of Life questionnaire (S-CGQoL).

2. Methods

2.1. Subjects

Data were collected from the departments of six psychiatrichospitals in France: Ajaccio (one hospital), Bordeaux (one), LaSeyne sur Mer (one), Marseille (two), and Paris (one). Theinclusion criteria for the caregiver were as follows: (1) having afamily member with a diagnosis of schizophrenia or schizoaf-fective disorder, according to the DSM-IV criteria (APA, 1994);

(2) being the mother or the father of the patient; (3) beingidentified by the individual with schizophrenia as the maincaregiver; (4) being 18 years of ageor older; (5) givinginformedconsentto participate in the study and (6) being a native Frenchspeaker. This project was conducted in accordance with theDeclaration of Helsinki and French Good Clinical Practices(CNIL, 2004; WMA, 2008).

2.2. Procedure

For a period of one month, personnel from each centeridentified inpatients and outpatients who had been given adiagnosis of schizophrenia and were between 18 and 64 years

old. Each patient was asked by a medical or nursing staff toname his or her main caregiver. When the patient identified a

mother or a father, we asked the patient if we could contactthe caregiver. When the patient agreed and when thecaregiver met the inclusion criteria, the following informationwas collected via self-report questionnaires (completed bythe caregivers) or routine clinical interview (conducted withthe patient by a psychiatrist).

2.3. Data collection

The data collected included the following:

1. Socio-demographic characteristics of the caregivers: gen-der, age, number of children, and employment status.

2. Socio-demographic and clinical characteristics of theindividuals with schizophrenia: age at the onset of thedisease; type of schizophrenia, according to DSM-IV ;psychotic symptoms, based on the Positive and NegativeSyndrome Scale (PANSS), which contains five subscales:positive symptoms, negative symptoms, disorganizationsymptoms, excitement, and emotional distress (Kay et al.,1986; van der Gaag et al., 2006a,b).

3. QoL questionnaires:The self-administered survey materials that were com-pleted by the caregivers included the tested QoL question-n ai r e ( S -C G Qo L ), a n d a v al i da t ed g e ne r ic Q o L questionnaire: the Short Form 36 (SF-36) (Leplege et al.,1998; Ware and Sherbourne, 1992), which is one of themost widely used generic quality of life scales forcaregivers of individuals with schizophrenia. SF-36 is ageneric, self-administered QoL questionnaire, consisting 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 (lowQoL level) to 100 (high QoL level).

2.4. Questionnaire development

The development of the S-CGQoL occurred in two phases:qualitative and quantitative. Item generation occurred duringthe qualitative phase, and item reduction and the validationprocess (Crocker and Algina, 1986) occurred during thequantitative phase. The two phases were conducted withdifferent samples.

2.4.1. Item generation: a qualitative approachItem generation occurred in two steps.First, the content of the questionnaire was derived from

face-to-face, semi-structured interviews performed by atrained interviewer ( Juniper et al., 1996). The interviewshave been described elsewhere (Lançon et al., 2000; Reineet al., 2003b). Briefly, interviews addressed the impact of thedisease on caregivers' QoL, based on the theory of expectation,which defines quality of life as the discrepancy betweenexpectations and current life experience (Calman, 1988).Caregivers' interviews were also used to determine thewording in question stems and the range of response options.Interviews were conducted until no new ideas emerged in the

content analysis performed in real time, up to a total of 33(Reine et al., 2003b). Interviews were recorded and entirely

2 R. Richieri et al. / Schizophrenia Research xxx (2010) xxx– xxx






transcribed. Content analysis was performed by three mem-bers of the steering committee who were skilled in textualanalysis and complemented by a computerised textual analysis(Alceste® software) (Kaid and Wadsworth, 1989). Sixty-sixquestions were identified from these interviews. Theseitems were answered using a six-point Likert scale, definedas “1—Never/Not at all”, “2—Rarely/A little”, “3—Sometimes/Somewhat”, “4—Often/A lot”, “5—Always/Very much” and “6—Not applicable”.

Second, 20 caregivers and 20 members of the FrenchNational Union of Friends and Families of Mentally Ill Persons(UNAFAM) were asked to comment on any aspect of thequestionnaire (i.e., content, wording, response choices) thatthey felt was irrelevant or merited improvement. Items thatwere ambiguous, misunderstood or rarely answered werewithheld or reworded, leading to a preliminary questionnairethat comprised 59 items.

Finally, the initial interviews with the caregivers guaran-teed that the questionnaire was a true reflection of thecaregivers' experience and consequently ensured content

validity. The second round of interviews with caregivers andmembers of UNAFAM ensured face validity.

2.4.2. Item reduction and validation of the S-CGQoL:

a quantitative approach

The item reduction process took into account both theresults of statistical analyses and the expertise of the steeringcommittee. Statistical approaches were based on both itemresponse theory (van der Linden and Hambleton, 1997) andclassical test theory. Removal of the items was discussed withregard to both metrological properties and impact on thefinal instrument's content, taking into account the items'meanings. The more meaningful and psychometrically sound

solution was kept to produce thefi

nal version of the S-CGQoL questionnaire.The final version of the S-CGQoL was then tested for

construct validity, reliability, and some aspects of externalvalidity.

Floor and ceiling effects were reported to assess theskewness of the response distribution. The floor effect refersto the proportion of individuals who have the worst possibleQoL score, and the ceiling effect refers to the proportion withthe best score possible. A high floor or ceiling effect limits thevalue of a tool because individuals falling within the highestand lowest ranges cannot receive better or worse scores thanthey have presently. Consequently, it causes a relative lack of

sensitivity in the questionnaire.Construct validity defines the construct to be measured bythe instrument and assesses the internal structure of itscomponents and the theoretical relationship of its item andsubscale scores. It was assessed using principal componentfactor analyses with varimax rotation (Nunnaly and Bernstein,1994) in order to determine the final structure and the numberof independent dimensions. Eigenvalues greater than or equalto 1 were retained (Kaiser and Caffrey, 1965). Items were keptin their respective dimensions if they revealed loadings greaterthan 0.4. The unidimensionality of each dimension wasassessed using Rasch analyses (van der Linden and Hambleton,1997). The partial credit model, an extension of the Rasch

model for Likert-type responses, was used. The scalability of each of the dimension scales was assessed by the pattern of

item goodness-of-fit statistics(INFIT); a value of INFIT between0.7 and 1.2 ensures that all items of the scale tend to measurethe same concept (Wright and Stone, 1979). Differential itemfunctioning (DIF) analyses were performed to check whetherall items behaved in the same way among subgroups definedaccording to potential confounding factors: age (N= orb60 years) and gender. A Rasch rating scale model was usedto identify invariance of item calibrations (a form of DIF)(Zumbo, 1999).

In addition, inter-dimension correlations were examinedusing Pearson's and polychoric coef ficients. Item internalconsistency was assessed by correlating each item with itsscale (corrected for overlap) using Pearson's coef ficient (alevel of 0.4 is recommended for supporting item-internalconsistency (Carey and Seibert, 1993). Item discriminantvalidity was assessed by determining the extent to whichitems correlated more highly with the dimensions that theywere hypothesised to represent than they did with others(Campbell and Fiske, 1959).

Internal consistency reliability refers to the strength of the

correlation between items within each domain of thequestionnaire and between all items in the questionnaire. Itwas carried out by calculating the Cronbach's alpha coef fi-cient (a coef ficient of at least 0.7 was expected for eachdimension) (Cronbach, 1951).

External validity was tested by studying the correlationsof the S-CGQoL dimension scores with the scores of the SF-36.The underlying assumption was that dimension scores of S-CGQoL would be more correlated with scores of similardimensions from SF-36 than they would be with dissimilarones. Another aspect of validity was examined using theknown-group approach, by testing the associations (compar-isons of means or correlations) between the S-CGQoL scores

and socio-demographic variables (gender, age, number of children, employment status, and age at the onset of thedisease) or clinical features (type of schizophrenia andPANSS). The comparisons of means were performed usingStudent's t -test or analysis of variance (ANOVA), followed bya Bonferonni post hoc analysis.

Several hypotheses were formulated: the S-CGQoL di-mension scores (1) should differ according to socio-demo-graphic characteristics of the caregivers: mothers, youngerparents and caregivers who lived alone with their child wouldhave lower levels of QoL; (2) QoL should be negativelycorrelated with the severity of the schizophrenia.

Data analyses were performed using SPSS 15.0 and

WINSTEP software (Wright et al., 2001).

3. Results

Only the results of the final psychometric validation phaseare reported in order to avoid confusion with intermediatedevelopment versions of the questionnaire.

3.1. Sample characteristics

Of the 347 patients who were screened during the studyperiod, 82 did not identify a mother or a father as the maincaregiver (23.6%). Among the 265 patients who identified

their mother or father, 19 had caregivers who refused toparticipate in the study. Therefore, our sample consisted of

3R. Richieri et al. / Schizophrenia Research xxx (2010) xxx– xxx






246 caregivers (70.9%) (Fig. 1). The characteristics of thecaregivers and individuals with schizophrenia are presentedin Table 1. Of the 246 caregivers, the mean age was 60.6 years(S.D.= 9.5) and 67.1% was mothers. A majority of thecaregivers were unemployed (62.6%), and, for 22.8%, one of

the two parents lived alone with their child.

3.2. Scoring

For each individual, a score for each of the dimensions wasobtained by computing the mean of the item scores on the

dimension. If fewer than one half of the items were missing,the mean of non-missing items was substituted for themissing items. All dimension scores were linearly trans-formed to a 0 to 100 scale, with 100 indicating the bestpossible level of QoL and 0 the worst. A global QoL index, theS-CGQoL index, was computed as the mean of the individualdimensions.

3.3. Construct validity and reliability (Table 2)

The iterative process of item selection resulted in a finalversion comprised of 25 items describing seven dimensions(see Appendix A). Each dimension was named according to

its constituent items, as follows: PsPhW: Psychological andPhysical Well-Being (5 items); PsBDL: Psychological Burdenand Daily Life (7 items); RS: Relationships with Spouse (3items); RPT: Relationships with Psychiatric Team (3 items);RFa: Relationships with Family (2 items); RFr: Relationshipswith Friends (2 items); and MB: Material Burden (3 items)(Table 2).

The seven-factor structure accounted for 74.4% of the totalvariance. The overall scalability was satisfactory, as all itemsshowed a good fit to the Rasch model within each dimension,with no items showing an INFIT statistic outside of theacceptable range, except for Relationships with Spouse. Theresults also confirmed the absence of DIF according to gender

or age and supported the invariance of the item calibrations.Item internal consistency was satisfactory for all dimensions,

Fig. 1. Caregiver enrollment. The analytical sample consisted of caregivers: (1) having a family member with a diagnosis of schizophrenia or schizoaffective

disorder, according to the DSM-IV criteria, (2) being the mother or the father, (3) being identified by the individual with schizophrenia as the main caregiver,

(4) being 18 years of age or older, (5) giving informed consent to participate in the study and (6) being a native French speaker.

Table 1

Sociodemographic and clinical characteristics of caregivers and individuals

with schizophrenia (n =246).

n %

Caregivers

Gender (female) 165 67.1

Age (years), mean ± SD 60.6 9.5

Number of children (N1) 208 84.6

Employment status (unemployed) 154 62.6

Individuals with schizophrenia

Age at onset of illness (years), mean ± SD 21.8 6.8

Illness duration 9.8 8.6

Living situation (MD=5)

With one parent 55 22.8

With two parents 101 41.9Independent 85 35.3

PANSS score, mean±SD

Total PANSS (range from 30 to 210) 71.5 18.8

Positive factor 15.9 6.4

Negative factor 19.5 6.9

Excitement 8.4 3.6

Disorganization symptoms 11.3 4.4

Emotional distress 7.7 3.6

Diagnosis of schizophrenia subtypes and schizoaffective disorder

Paranoid 153 62.2

Undifferentiated 32 13.0

Disorganised 8 3.3

Residual 43 17.5

Schizoaffective disorder 10 4.1

SD: standard deviation.MD: missing data.





http://localhost/var/www/apps/conversion/tmp/scratch_4/image%20of%20Fig.%E0%B1%80



ranging from 0.64 to 0.95 for each item. The correlation of each item with its associated dimension was higher than itscorrelation with the other dimensions (item discriminantvalidity).

Cronbach's alpha coef ficients ranged from 0.79 to 0.92 inthe whole sample, indicating high internal consistency. Thedeletion of any of the 25 items did not increase the internalconsistency of any of the 7 dimensions.

3.4. External validity

The S-CGQoL index was significantly correlated with all

SF-36 dimension scores (rs= 0.17–

0.42). However, only twodimensions of the S-CGQoL (PsPhW, PsBDL) showed mediumto high correlations with dimension scores of the SF-36assessing mental and physical well-being: PsPhW–PF,PsPhW–SF, PsPhW–RPP, PsPhW–MH, PsPhW–VIT, PsPhW–

GH, PsBDL –SF, and PsBDL –MH. On the contrary, the specificdimensions of the S-CGQoL —Relationships with Spouse (RS),with Psychiatric Team (RPT), with Family (RFa), with Friends(RFr), and Material Burden (MB)—were globally uncorrelatedor weakly correlated with the dimensions of SF-36 (Table 3).

Comparisons by gender (female vs. male) showedsignifi

cantdifferences fortwo dimensions: PsPhW 51.4 (SD=17.6) vs.59.3(SD=19.4), p =0.002; and RS 65.1 (SD= 23.0) vs. 77.7(SD=17.0), pb0.0001. A higher number of children wereassociated with a higher S-CGQoL score for (MB) andthe overallindex. Unemployed caregivers showed a significantly higherlevel of RS and a lowerlevel of RFr. Caregivers who reported thattheylivedalonewith the individualwithschizophrenia reporteda significantlylower QoL thanthose who werepartof a couple orfor whom the individual with schizophrenia lived independent-ly (RS, RFa and the index). Caregivers of individuals withparanoid schizophrenia reported lower S-CGQoL scores (RPTand index) when compared to caregivers of individuals with a

disorganized form of schizophrenia (Table 4).Three S-CGQoL dimension scores (PsBDL, RS and RFr)produced significant levels of correlation with the age of thecaregiver (respectively, 0.20, 0.14 and −0.20). The age of thepatient at the onset of the disease was significantly correlatedwith three dimensions (PsBDL, RS, RFa) and the index(rs=0.14–0.24). Higher QoL levels of caregivers wereglobally associated with lower levels of severity of schizo-phrenia. S-CGQoL dimension scores were significantly andnegatively correlated with the PANSS total (PsPhW, RFr, MB

Table 2

Dimension scale characteristics: item-internal consistency (IIC), item-discriminant validity (IDV), percentage of missing values (%MV), floor effect (Floor), ceiling

effect (Ceiling), Cronbach's Alpha (Alpha), Rasch statistics (INFIT), intra-class correlation coef ficient (ICC) of the S-CGQoL dimension scoresand global index mean

(SD) (n =246).

S-CGQoL Mean (SD) IIC IDV MV

(%)

Floor

(%)

Ceiling

(%)

Alpha a INFIT b

Min–max Min–max Min–max

PsPhW 53.9 (18.5) 0.83–0.92 0.01–0.56 0.4 11.7 7.0 0.92 0.70–1.20

PsBDL 62.8 (16.4) 0.64–0.78 0.00–0.52 0.4 13.1 14.9 0.88 0.78–1.18RS 69.5 (21.9) 0.74–0.91 0.00–0.39 7.7 7.7 45.4 0.80 0.60–1.30

RPT 63.0 (20.7) 0.92–0.95 0.00–0.29 5.3 8.1 10.9 0.92 0.75–1.13

RFa 57.9 (22.8) 0.93–0.94 0.00–0.41 4.5 15.5 9.8 0.87 0.96–0.98

RFr 62.9 (20.7) 0.93–0.94 0.06–0.34 4.9 8.7 10.0 0.85 0.98–0.99

MB 69.1 (22.4) 0.80–0.88 0.07–0.42 5.3 10.2 31.7 0.79 0.78–1.19

Index 62.7 (11.4) NA c NA c 19.9 11.4 15.3 0.87 NA c

S-CGQoL —PsPhW: Psychological and Physical Well-being; PsBDL: Psychological Burden and Daily Life; RS: Relationships with Spouse; RPT: Relationships with

Psychiatric Team; RFa: Relationships with Family; RFr: Relationships with Friends; MB: Material Burden; Index, global S-CGQoL score. S-CGQoL scores, ranging

from 0 to 100 (with 100 indicating best quality of life).a Cronbach's alpha.b Rasch statistics.c Not applicable.

Table 3

Spearman's correlations between S-CGQoL scores and short-form 36 scores (n =246).

PsPhW PsBDL RS RPT RFa RFr MB Index

PF 0.46⁎⁎ 0.27 ⁎⁎ 0.14 ⁎ 0.11 0.18 ⁎⁎ 0.13 0.15 ⁎ 0.37 ⁎⁎

SF 0.53 ⁎⁎ 0.41 ⁎⁎ 0.13 ⁎ 0.06 0.23 ⁎⁎ 0.11 0.07 0.37 ⁎⁎

RPP 0.43 ⁎⁎ 0.28 ⁎⁎ 0.15 ⁎ 0.02 0.18 ⁎⁎ 0.14 ⁎ 0.13 ⁎ 0.33 ⁎⁎

REP 0.37 ⁎⁎ 0.25 ⁎⁎ 0.06 −0.07 0.08 0.06 −0.00 0.17 ⁎

MH 0.70 ⁎⁎ 0.43 ⁎⁎ 0.15 ⁎ 0.11 0.23 ⁎⁎ 0.12 0.09 0.42 ⁎⁎

VIT 0.66 ⁎⁎ 0.37 ⁎⁎ 0.13 0.04 0.18 ⁎⁎ 0.03 0.09 0.32 ⁎⁎

BP 0.45 ⁎⁎ 0.23 ⁎⁎ 0.10 0.04 0.06 0.18 ⁎⁎ 0.17 ⁎ 0.29 ⁎⁎

GH 0.52 ⁎⁎ 0.34 ⁎⁎ 0.12 0.07 0.20 ⁎⁎ 0.24 ⁎⁎ 0.29 ⁎⁎ 0.42 ⁎⁎



from 0 to 100 (with 100 indicating best quality of life).

SF-36—PF: Physical Functioning; SF: Social Functioning; RPP: Role—Physical Problems; REP: Role—Emotional Problems; MH: Mental Health; VIT: Vitality; BP:

Bodily Pain; and GH: General Health.⁎

pb

0.05.⁎⁎ pb0.01.







and Index), positive (RFr and Index), negative (RPT) and

emotional distress scores (RS and Index). In contrast, nosignificant correlation was found with excitement or disor-ganization symptom scores of the PANSS (Table 5).

3.5. Acceptability

The average completion time is expected to be less than

five minutes, which is fully compatible with clinical practice.

The rate of missing data was globally low: between 0.4 and

7.7% for the dimension scores and 19.9% for the index(Table 2).

4. Discussion

In the past, the primary emphases in research have beenon the person with the disease and on the disease process,rather than on family caregivers (Carter et al., 1998).However, caregivers are now considered to be a major

Table 4

Comparisons of S-CGQoL score means (SD) according to gender, number of children, employment status of the caregiver, and living situation, subtypes of

schizophrenia diagnosis (n =246).

PsPhW PsBDL RS RPT Rfa RFr MB Index

Gender of caregiver

Female 51.4 (17.6) 61.5 (15.8) 65.1 (23.0) 64.7 (20.1) 56.5 (23.6) 64.1 (20.6) 68.7 (22.8) 61.9 (10.9)

Male 59.3 (19.4) 65.5 (17.3) 77.7 (17.0) 59.6 (21.7) 60.9 (20.9) 60.5 (21.0) 70.0 (21.7) 64.4 (12.2)

p value 0.002 0.074 b0.0001 0.079 0.168 0.224 0.680 0.147

Number of children of caregiver

1 51.7 (18.5) 59.1 (19.6) 63.5 (21.2) 57.4 (21.2) 57.3 (21.5) 58.9 (21.5) 61.7 (18.8) 58.3 (9.8)

2+ 54.4 (18.5) 63.5 (15.7) 70.6 (21.9) 64.0 (20.5) 58.1 (23.0) 63.6 (20.6) 70.5 (22.8) 63.5 (11.5)

p value 0.429 0.202 0.072 0.084 0.853 0.211 0.030 0.023

Employment status of caregiver

Employed 54.6 (19.3) 61.6 (16.8) 65.0 (22.7) 65.5 (20.0) 58.2 (22.5) 67.4 (20.4) 69.8 (22.7) 63.4 (11.5)

Unemployed 53.6 (18.1) 63.6 (16.2) 72.2 (21.1) 61.6 (21.1) 57.8 (23.0) 60.3 (20.5) 68.7 (22.3) 62.3 (11.3)

p value 0.695 0.373 0.015 0.175 0.898 0.010 0.733 0.529

Living situation of the individual with schizophrenia

One parent 55.6 (20.4) 62.8 (16.9) 53.6 (25.3) 60.8 (23.0) 46.5 (21.3) 60.6 (21.8) 65.8 (23.7) 58.4 (11.7)

Two parents 51.6 (17.1) 61.8 (15.5) 74.4 (18.2) 62.8 (19.4) 63.6 (23.9) 64.5 (21.1) 68.1 (22.7) 63.5 (12.0)

Independent 55.8 (19.3) 64.1 (17.6) 71.9 (19.7) 64.4 (21.2) 58.9 (19.6) 62.1 (20.0) 72.6 (20.8) 64.0 (10.3)

p value 0.240 0.634 b0.0001 0.631 b0.0001 0.510 0.191 0.050

Subtypes of schizophrenia diagnosis and schizoaffective disorder

Paranoid 52.3 (18.2) 60.6 (16.8) 68.7 (20.5) 60.5 (20.5) 56.0 (22.2) 62.4 (21.1) 67.0 (23.6) 61.0 (10.9)

Und ifferent ia ted 56 .2 (18.5) 6 5.6 (15. 4) 64.4 (2 4.6) 66 .1 (21.8 ) 58 .3 (22 .7) 6 1.0 (20.8 ) 70.2 (2 0.4) 62 .5 (9.7)

Disorganised 46.5 (7.7) 63.8 (7.9) 83.3 (15.1) 80.0 (17.8) 77.5 (19.1) 70.0 (21.4) 82.9 (14.3) 74.7 (8.3)

Residual 59.7 (20.4) 67.0 (15.6) 72.3 (24.1) 63.2 (19.5) 60.5 (22.8) 62.6 (20.5) 73.0 (19.5) 65.6 (12.4)

Schizoaffective disorder 52.9 (17.5) 69.1 (17.2) 73.0 (27.2) 78.5 (18.5) 61.4 (31.8) 72.0 (16.2) 72.7 (23.2) 68.4 (14.8)

p value 0.132 0.084 0.215 0.010 0.103 0.527 0.256 0.006



from 0 to 100 (with 100 indicating best quality of life). Values significant at the 5% level are marked in bold.

Table 5

Spearman correlations of S-CGQoL scores with age, caregiver age at onset of illness, and PANSS score of the patient ( n =246).

PsPhW PsBDL RS RPT RFa RFr MB IndexCaregiver

Age 0.12 0.20 ⁎⁎ 0.14 ⁎ −0.03 −0.08 −0.20 ⁎⁎ 0.09 0.01

Patient

Age at onset of illness 0.07 0.15 ⁎ 0.14 ⁎ 0.05 0.18 ⁎⁎ 0.06 0.17 ⁎ 0.24 ⁎⁎

Total PANSS −0.13 ⁎ −0.09 −0.08 −0.09 −0.05 −0.17 ⁎ −0.13 ⁎ −0.21 ⁎⁎

Positive factor −0.09 −0.13 −0.00 −0.09 −0.10 −0.19 ⁎ −0.10 −0.18 ⁎

Negative factor 0.00 0.04 −0.06 −0.15 ⁎ 0.01 −0.08 −0.10 −0.14

Excitement −0.09 −0.07 −0.09 −0.02 −0.05 −0.11 0.03 −0.11

Disorganization symptoms −0.05 −0.10 −0.01 −0.04 −0.06 −0.11 −0.11 −0.09

Emotional distress −0.09 −0.00 −0.23 ⁎ −0.09 −0.10 −0.09 −0.13 −0.22 ⁎



from 0 to 100 (with 100 indicating best quality of life).⁎

pb

0.05.⁎⁎ pb0.01.







component in delivering an integral service to individualswith schizophrenia and their families. For example,Caqueo-Urizar et al. (2009) suggest that the developmentof supporting activities for the family is an importantconcern, and they warn that focusing solely on symptomreduction and relapse prevention is insuf ficient. There is aneed for improved family intervention programs that canbe delivered by health services teams. Pursuant to this,providing a reliable and valid instrument for the familycaregivers of individuals with schizophrenia is necessary.The S-CGQoL assesses significant family factors that mustbe discussed when planning care for an individual withschizophrenia.

First, identifying the components of the questionnairebased on face-to-face interviews strengthens the contentvalidity of the final version of the current questionnaire.Although it is now generally agreed that the content of QoL measures should be derived directly from relevant persons(patients, caregivers, etc.) because of discrepancies betweenthem and experts' point of view (Slevin et al., 1988), the

majority of available questionnaires for caregivers of indivi-duals with schizophrenia (on burden, caregiving, copingstrategies and opinions on the causes and consequences of mental disorders) are based only on the physicians' orexperts' point of view, except for the Experience of CaregivingInventory (Szmukler et al., 1996). The content of the S-CGQoL encompasses experiences of great importance to patients andis substantially different from other generic QoL or burdeninstruments. The low correlations with the SF-36 show thatthe S-CGQoL shares certain common themes with generic QoL instruments but not to a degree that would suggest that S-CGQoL measures the same elements. In the same way, somedimensions of the S-CGQoL are similar to those referred to, in

both the literature and existing tools, as Psychological andPhysical Well-being, Psychological Burden and Daily Life, andMaterial Burden. However, some dimensions, like Relation-ships with Psychiatric Teams, emerged as specific concerns of caregivers of individuals with schizophrenia. On detecting aproblem or a decrease in Relationships with PsychiatricTeams, the clinician will intervene in some way to addressthis. This “extra information” can be gained as a result of theQoL measure, prompting discussion with the patient. Kikkertet al. (2006) reported a positive influence on adherence if professionals focus on positive aspects of medication, en-hancing insight, and fostering a positive therapeutic relation-ship with patients and caregivers. The focus on the different

aspects of the social life (relationships with spouses, family,and friends) also permits a precise analytical description of the social dimension that is not often assessed in otherquestionnaires.

Second, our proposal meets standards concerning psy-chometric properties. The goals of the study were to test thevalidity and reliability of the instrument's internal structureand to provide a first assessment of its external validity, tosupport the interpretation of the S-CGQoL scores. The internalstructure, supported by a high internal consistency (74.4% of the total variance), confirmed that caregivers' QoL is amultidimensional concept. Internal consistency reliabilitiesfor the seven dimensions were shown to be high (Cronbach's

alphaN

0.70). DIF analyses were satisfactory and constitute aninteresting property rarely studied in other questionnaires.

We can speculate that responses to S-CGQoL are comparableaccording to the responders' characteristics.

External validity, explored by the use of socio-demo-graphic and clinical characteristics, globally confirmed ourassumptions.

We found a positive association between QoL andcaregivers' age for two dimensions: PsBDL and RS. This result

is concordant with the majority of studies that found thatolder caregivers perceive less burden, either because theyhave greater tolerance or resignation, better coping strategiesor because improvements occur in patients' symptoms(Gutierrez-Maldonado et al., 2005; Magliano et al., 2005).On the contrary, older caregiver age was associated with alower score on the Relationships with Friends dimension,which may account for the progressive damage of schizo-phrenia in caregivers' social life (Webb et al., 1998).

As expected, women had lower QoL than men within thedimensions of psychological well-being, physical well-beingand relationship with spouse. Most studies show thatmothers are generally the primary caregivers and that they

have a lower QoL than other types of informal caregivers(Caqueo-Urizar et al., 2009). Gutierrez-Maldonado et al.(2005) reported that mothers experienced the greatestburden because they were responsible for most aspects of the patients' daily care.

Looking at the influence of the number of children oncaregivers' QoL, we found that caregivers with more than onechild reported higher QoL. One explanation is that havingadditional people in the household provided additionalassistance in the care, especially for material burden (Li et al.,2007).

Working life was significantly associated with QoL in ourstudy. Our results suggest that the absence of employment

can improve relationships with spouse but deterioraterelationships with friends. For Magliano et al. (2003),professional and social network supports represent crucialresources for reducing family burden in schizophrenia. Theabsence of employment can result in an investment inhousehold duties and care for individuals with schizophrenia,which can rob caregivers of an extra-familial social life.

The living situation of caregivers and their patients is alsoan important factor associated with QoL, and our resultssupport the fact that opportunities for residential care shouldin principal increase family QoL (Roick et al., 2007).

Another result related to the age of the patient at the onsetof the disease supports the external validity of our study.

Older age was associated with a higher QoL level for thecaregiver. This result makes sense, as individuals with youth-onset schizophrenia have severe cognitive deficits, whereasthose with late-onset schizophreniahave relatively preservedcognitive functioning (Rajji et al., 2009). Thisfinding supportsthe view that severity of the disease process is associated withdifferent ages of onset.

We also found that S-CGQoL scores were negativelycorrelated with the severity of psychotic symptoms(PANSS), mainly for positive symptoms and emotionaldistress. This result is consistent with previous studies,which often report that positive symptoms represent thegreatest strain on family members (Caqueo-Urizar et al.,

2009). Additionally, emotional distress, which includesdepression symptoms, is known to be highly correlated







with the QoL of individuals with schizophrenia (Reine et al.,2003a). This may explain the correlation between emotionaldistress and the QoL of caregivers, whomay be affected by thewell-being of individuals with schizophrenia. These correla-tions were moderate in strength, stressing the particularinterest of relying on a QoL measurement to complement theclinical approach, which does not encompass the wholeexperience of patients and their caregivers.

Finally, according to the usual parameters, the accept-ability of S-CGQoL is good. The rate of missing data waslow, between 0.4 and 7.7% for the seven dimensions. Theaverage completion time is expected to be around fiveminutes, which will facilitate its use in research and clinicalpractice.

4.1. Limitations and further development

Several limitations must be noted.First, the sample may not be representative of the entire

population of caregivers of individuals with schizophrenia.

Further work is needed to test our questionnaire's strengthsand weaknesses in various national and cultural contexts. Thepsychometric properties need to be studied in a widerpopulation, including spouses, siblings and children of individuals with schizophrenia. Indeed, spouses, siblings,children and other relatives may experience unique impair-ments in QoL. It would be interesting to investigatedifferences in QoL impairment between caregivers fromthese various categories. Nonetheless, this limitation of thecurrent work is moderated by the fact that parents representthe majority of caregivers for individuals with schizophrenia.Second, it is necessary to reinforce external validity bystudying the relationships between S-CGQoL and burden,

caregiving or opinion instruments, which are currently themost widely used with caregivers of individuals withschizophrenia. Finally, the reproducibility of these resultsand their sensibility to change should be explored in futurestudies. This property is of major interest for the follow-up of caregivers and patients in clinical practice and for psychoso-cial program researches.

5. Conclusion

The S-CGQoL is not intended to replace available ques-tionnaires on burden, caregiving and opinions. Rather, the S-CGQoL adds interesting information that is oriented toward a

more global service to individuals with schizophrenia andtheir families. It would be important to explore thereproducibility of the current results and their sensitivity tochange. However, reliability and validity of S-CGQoL areevidenced by our results. Our approach provides an original,valid and valuable tool that may be useful in routine practiceand clinical research.

Role of Funding Source

None.

Contributors

RR and LB wrote the manuscript.

All authors designed the study and wrote the protocol.RR and LB managed the literature searches and analyses.

AL, LB, MCS and PA managed the statistical analysis.

All authors contributed to and approved the final manuscript.

Conflict of interest

The authors report no conflict of interest.

Acknowledgements

None.

Appendix A. List of the 25 S-CGQoL items

French i tems Item general meaning Dimensi ons

Au cours des 12 derniers

mois, avez-vous…

For the last 12 months,

have you…

1 ét é tr iste, déprimé? felt sad, depressed? PsPhW

2 été moralement

fatigué, usé?

felt overworked,

burnt-out?

PsPhW

3 m anqué d'énergie? lacked energy? PsPhW

4 été physiquementfatigué, usé?

been tired, worn-out? PsPhW

5 été angoissé, inquiet? felt anxious, worried? PsPhW

6 dû renoncer à des choses

qui vous tenaient à

cœur?

had to give up doing

things that you were

very keen to do?

PsBDL

7 dû diminuer le temps

réservé à vos loisirs

(sorties, jardinage,

shopping, bricolage...)?

had to reduce the

amount of time devoted

to your leisure activities

(outings, gardening,

shopping, odd jobs…)?

PsBDL

8 été gêné de laisser

votre enfant pour

assumer vos tâches

de la vie quotidienne

ou professionnelles?

been embarrassed to

leave your child to

attend your day or

professional life?

PsBDL

9 eu le sentiment dene pas consacrer le

temps nécessaire au

reste de votre famille?

had the feeling thatyou didn't devote

enough time to the rest

of your family?

PsBDL

10 eu le sentiment de

manquer de liberté?

had the feeling that you

weren't free?

PsBDL

11 eu le sentiment de vivre

au jour le jour?

had the feeling that you

led a day-to-day

existence?

PsBDL

12 eu des dif ficultés à faire

des projets

professionnels ou

personnels?

had dif ficulty in making

professional or personal

plans?

PsBDL

13 été aidé(e), soutenu(e)

par votre conjoint?

been helped, supported

by your spouse?

RS

14 été écouté, compris(e)

par votre conjoint?

been listened to,

understood by yourspouse?

RS

15 eu une vie sentimentale

et sexuelle satisfaisante?

had a satisfying

emotional and

sexual life?

RS

16 été écouté(e), compris(e)

par les soignants

(médecins, infirmières…)?

been listened to,

understood by doctors

and nurses?

RPT


par les soignants

(médecins, infirmières…)?


by doctors and nurses?

RPT

18 été satisfait(e) des

informations données par

les soignants (médecins,

infirmières…)?

been satisfied with

information given by

doctors and nurses?

RPT


par votre famille?


by your family?

RFa







References

Ahn, J., McCombs, J.S., Jung, C., Croudace, T.J., McDonnell, D., Ascher-Svanum,H., Edgell, E.T., Shi, L., 2008. Classifying patients by antipsychoticadherence patterns using latent class analysis: characteristics of

nonadherent groups in the California Medicaid (Medi-Cal) program.Value Health 11 (1), 48–56.

APA, 1994. DSM-IV. Diagnostic and Statistical Manual of Mental Disorders,4th ed. American Psychiatric Association, Washington, DC.

Awad, A.G., Voruganti, L.N., 2008. Theburden of schizophrenia on caregivers:a review. Pharmacoeconomics 26 (2), 149–162.

Calman, M., 1988. Towards a conceptual framework of lay evaluation of health care. Soc. Sci. Med. 27, 927–933.

Campbell, D.T., Fiske, D.W., 1959. Convergent and discriminant validation bythe multitrait–multimethod matrix. Psychol. Bull. 56 (2), 81–105.

Caqueo-Urizar, A., Gutierrez-Maldonado, J., Miranda-Castillo, C., 2009.Quality of life in caregivers of patients with schizophrenia: a literaturereview. Health Qual. Life Outcomes 7, 84.

Carey, R.G., Seibert, J.H., 1993. A patient survey system to measure qualityimprovement: questionnaire reliability and validity. Med. Care 31 (9),834–845.

Carter, J.H., Stewart, B.J., Archbold, P.G., Inoue, I., Jaglin, J., Lannon, M., Rost-

Ruffner, E., Tennis, M., McDermott, M.P., Amyot, D., B arter, R., Cornelius, L.,Demong, C.,Dobson, J., Duff, J., Erickson, J., Gardiner, N.,Gauger, L.,Gray, P.,Kanigan, B., Kiryluk, B., Lewis, P., Mistura, K., Malapira, T., Zoog, K., et al.,1998. Living with a person who has Parkinson's disease: the spouse'sperspective by stage of disease. Parkinson's Study Group. MovementDisord. 13 (1), 20–28.

CNIL,2004.Act n°78-17 of6 January1978on Data Processing,DataFilesandIndividual Liberties (amended by the Act of 6 August 2004 relating tothe protection of individuals with regard to the processing of personaldata). J. Of ficiel République Française Assemblée Nationale et Sénat.France 182, 14063.

Cooper, C., Bebbington, P., King, M., Brugha, T., Meltzer, H., Bhugra, D., Jenkins, R., 2007. Why people do not take their psychotropic drugs asprescribed: results of the 2000 National Psychiatric Morbidity Survey.Acta Psychiatr. Scand. 116 (1), 47–53.

Crocker, L., Algina, J., 1986. Introduction to Classical and Modern Test Theory.Holt, Rinehart & Winston, New York.

Cronbach, L.J., 1951. Coef ficient alpha and the internal structure of tests.Psychometrika 16, 297–334.

Glozman, J.M., 2004. Quality of life of caregivers. Neuropsychol. Rev. 14 (4),183–196.

Green, M.F., Kern, R.S., Braff, D.L., Mintz, J., 2000. Neurocognitive deficits andfunctional outcome i n schizophrenia: are we measuring the “right stuff ”?Schizophr. Bull. 26 (1), 119–136.

Gutierrez-Maldonado, J., Caqueo-Urizar, A., Kavanagh, D.J., 2005. Burden of care and general health in families of patients with schizophrenia. Soc.Psychiatry Psychiatr. Epidemiol. 40 (11), 899–904.

Joyce, J., Leese, M., Szmukler, G., 2000. The experience of caregiving inventory:further evidence. Soc. Psychiatry Psychiatr. Epidemiol. 35 (4), 185–189.

Juniper, E.F., Guyatt, G.H., Mesbah, M.P.R., 1996. Quality of Life andPharmacoeconomics in Clinical Trials. Lippincott-Raven, Philadelphia.

Kaid, L.L., Wadsworth, A.J., 1989. Content analysis. In: Emmert, P., Baker, L.L.(Eds.), Measurement of Communication Behavior. Longman, New York.

Kaiser, H.F., Caffrey, J., 1965. Alpha factor analysis. Psychometrika 30, 1–14.Kallert, T.W., Nitsche, I., 2008. Assessing the opinions of relatives on the

causes and social consequences of different mental disorders: areinstruments cross-culturally valid? Psychiatry Res. 158 (3), 344–355.

Kasckow, J.W.,Twamley, E., Mulchahey, J.J.,Carroll, B., Sabai,M., Strakowski, S.M.,Patterson, T., Jeste, D.V., 2001. Health-related quality of well-being inchronically hospitalized patients with schizophrenia: comparison withmatched outpatients. Psychiatry Res. 103 (1), 69–78.

Kay, S.R., Opler, L.A., Fiszbein, A., 1986. Significance of positive and negativesyndromes in chronic schizophrenia. Br. J. Psychiatry 149, 439–448.

Kikkert,M.J., Schene, A.H., Koeter, M.W., Robson,D., Born, A.,Helm, H., Nose, M.,Goss, C., Thornicroft, G., Gray, R.J., 2006. Medication adherence inschizophrenia: exploring patients', carers' and professionals' views.

Schizophr. Bull. 32 (4), 786–794.Kurtz, M.M., Wexler, B.E., Fujimoto, M., Shagan, D.S., Seltzer, J.S., 2008.

Symptoms versus neurocognition as predictors of change in life skills inschizophrenia after outpatient rehabilitation. Schizophr. Res. 102 (1–3),303–311.

Lançon, C., Simeoni, M.C., Beaune, D., Toumi, M., Azorin, J.M., Auquier, P.,2000. Quality of life of non-institutional caregivers of schizophrenicpatients: contribution of qualitative interviews to questionnaire gener-ation. Qual. Life Res. 9, 335.

Lehman, A.F., 1983. The well-being of chronic mental patients. Arch. Gen.Psychiatry 40 (4), 369–373.

Leplege, A., Ecosse, E., Verdier, A., Perneger, T.V., 1998. The French SF-36Health Survey: translation, cultural adaptation and preliminary psycho-metric evaluation. J. Clin. Epidemiol. 51 (11), 1013–1023.

Levene, J.E., Lancee, W.J., Seeman, M.V., 1996. The perceived family burdenscale: measurement and validation. Schizophr. Res. 22 (2), 151–157.

Li, J., Lambert, C.E., Lambert, V.A., 2007. Predictors of family caregivers'

burden and quality of life when providing care for a family member withschizophrenia in the People's Republic of China. Nurs. Health Sci. 9 (3),192–198.

Magliano, L., Guarneri, M., Marasco, C., Tosini,P., Morosini, P.L., Maj, M., 1996.A new questionnaire assessing coping strategies in relatives of patientswith schizophrenia: development and factor analysis. Acta Psychiatr.Scand. 94 (4), 224–228.

Magliano, L., Marasco, C., Guarneri, M., Malangone, C., Lacrimini, G., Zanus, P.,Maj,M., 1999. A newquestionnaireassessingthe opinionsof therelativesof patients with schizophrenia on the causes and social consequences of thedisorder: reliability and validity. Eur. Psychiatry 14 (2), 71–75.

Magliano, L., Fiorillo, A., Malangone, C., Marasco, C., Guarneri, M., Maj, M.,2003. The effect of social network on burden and pessimism in relativesof patients with schizophrenia. Am. J. Orthopsychiatry 73 (3), 302–309.

Magliano, L., Fiorillo, A., Fadden, G., Gair, F., Economou, M., Kallert, T.,Schellong, J., Xavier, M., Goncalves Pereira, M., Torres Gonzales, F.,Palma-Crespo, A., Maj, M., 2005. Effectiveness of a psychoeducational

intervention for families of patients with schizophrenia: preliminaryresults of a studyfunded by the European Commission.World Psychiat.4 (1), 45–49.

Martens, L., Addington, J., 2001. The psychological well-being of familymembers of individuals with schizophrenia. Soc. Psychiatry Psychiatr.Epidemiol. 36 (3), 128–133.

McKenna, S., 1997. Measuring quality of life in schizophrenia. Eur. Psychiatry12, 267s–274s.

Nunnaly, J.C., Bernstein, I.C., 1994. Psychometric Theory. Mc Graw-Hill, NewYork.

Ochoa, S., Vilaplana, M., Haro, J.M., Villalta-Gil, V., Martinez, F., Negredo, M.C.,Casacuberta, P., Paniego, E., Usall, J., Dolz, M., Autonell, J., 2008. Do needs,symptoms or disability of outpatients with schizophrenia influence familyburden? Soc. Psychiatry Psychiatr. Epidemiol. 43 (8), 612–618.

Provencher, H.L., Mueser, K.T., 1997. Positive and negative symptombehaviors and caregiver burden in the relatives of persons withschizophrenia. Schizophr. Res. 26 (1), 71–80.

Rajji, T.K., Ismail, Z., Mulsant, B.H., 2009. Age at onset and cognition inschizophrenia: meta-analysis. Br. J. Psychiatry 195 (4), 286–293.

(continued)

French items It em general meani ng Di mensi ons

Au cours des 12 derniers

mois, avez-vous…

For the last 12 months,

have you…


par votre famille?

been listened to,

understood

by your family?

RFa


par vos amis, votre

entourage?


by your friends?

RFr


par vos amis, votre

entourage?

been listened to,

understood

by your friends?

RFr

23 rencontré des dif ficultés

dans vos démarches

administratives liées à

la maladie?

encountered dif ficulties

because of your child's

illness when applying

to administration

departments?

MB

24 eu des dif ficultés

financières pour faire

face à la maladie?

had financial troubles

in facing your child's

illness?

MB

25 eu des dif ficultés

matérielles (logement,

transport…

)?

had material dif ficulties

(housing, transport…)?

MB

S-CGQoL —PsPhW: Psychological and Physical Well-being; PsBDL:

Psychological Burden and Daily Life; RS: Relationships with Spouse; RPT:

Relationships with Psychiatric Team; RFa: Relationships with Family; RFr:

Relationships with Friends; MB: Material Burden.

Theuse of theS-CGQoL is free of authors' royaltyfees.Researcherswishing to

use the S-CGQoL should contact Laurent Boyer ([email protected]),

who will give them all of the information on the questionnaire.

Appendix A (continued )









Reine, G., Lancon, C., Di Tucci, S., Sapin, C., Auquier, P., 2003a. Depression andsubjective quality of life in chronic phase schizophrenic patients. ActaPsychiatr. Scand. 108 (4), 297–303.

Reine, G., Lancon, C., Simeoni, M.C., Duplan, S., Auquier, P., 2003b. Caregiverburden in relatives of persons with schizophrenia: an overview of measure instruments. Encephale 29 (2), 137–147.

Reine, G., Simeoni, M.C., Auquier, P., Auquier, A., Aghababian, V., Lancon, C.,2005. Assessing health-related quality of life in patients suffering fromschizophrenia: a comparison of instruments. Eur. Psychiatry 20 (7),510–519.

Roick, C., Heider, D., Bebbington, P.E., Angermeyer, M.C., Azorin, J.M., Brugha,T.S., Kilian, R., Johnson, S., Toumi, M., Kornfeld, A., 2007. Burden oncaregivers of people with schizophrenia: comparison between Germanyand Britain. Br. J. Psychiatry 190, 333–338.

Roncone, R., Mazza, M., Ussorio, D., Pollice, R., Falloon, I.R., Morosini, P.,Casacchia, M., 2007. The questionnaire of family functioning: apreliminary validation of a standardized instrument to evaluatepsychoeducational family treatments. Community Ment. Health J. 43(6), 591–607.

Rosen, A., Hadzi-Pavlovic, D., Parker, G., 1989. The life skills profile: ameasure assessing function and disability in schizophrenia. Schizophr.Bull. 15 (2), 325–337.

Rosen, A., Trauer, T., Hadzi-Pavlovic, D., Parker, G., 2001. Development of abrief form of the Life Skills Profile: the LSP-20. Aust N Z J Psychiatry. 35(5), 677–683.

Schene, A.H., Tessler, R.C., Gamache, G.M., 1994. Instruments measuring familyor caregiver burden in severe mental illness. Soc. Psychiatry Psychiatr.

Epidemiol. 29 (5), 228–240.Schulz, R., Beach, S.R., 1999. Caregiving as a risk factor for mortality: the

Caregiver Health Effects Study. JAMA 282 (23), 2215–2219.Slevin, M.L., Plant, H., Lynch, D., Drinkwater, J., Gregory, W.M., 1988. Who

should measure quality of life, the doctor or the patient? Br. J. Cancer 57(1), 109–112.

Szmukler, G.I., Burgess, P., Herrman, H., Benson, A., Colusa, S., Bloch, S., 1996.Caring for relatives with serious mental illness: the development of theExperience of Caregiving Inventory. Soc. Psychiatry Psychiatr. Epidemiol.31 (3–4), 137–148.

Valenstein, M., Blow, F.C., Copeland, L.A., McCarthy, J.F., Zeber, J.E., Gillon, L.,Bingham, C.R., Stavenger, T., 2004. Poor antipsychotic adherence amongpatients with schizophrenia: medication and patient factors. Schizophr.Bull. 30 (2), 255–264.

van der Gaag, M.,Cuijpers, A.,Hoffman, T.,Remijsen, M.,Hijman, R.,de Haan, L.,van Meijel, B., van Harten, P.N., Valmaggia, L., de Hert, M., Wiersma, D.,2006a. Thefive-factor model of thePositive and Negative Syndrome Scale I:confirmatory factor analysis fails to confirm 25 published five-factorsolutions. Schizophr. Res. 8 5 (1–3), 273–279.

van der Gaag, M., Hoffman, T., Remijsen, M., Hijman, R., de Haan, L., van

Meijel, B., van Harten, P.N., Valmaggia, L., de Hert, M., Cuijpers, A.,Wiersma, D., 2006b. The five-factor model of the Positive and NegativeSyndrome Scale II: a ten-fold cross-validation of a revised model.Schizophr. Res. 85 (1–3), 280–287.

van der Linden, W.J., Hambleton, R. (Eds.), 1997. Handbook of Modern ItemResponse Theory. Springer, Berlin.

Velligan, D.I., Weiden, P.J., Sajatovic, M., Scott, J., Carpenter, D., Ross, R.,Docherty, J.P., 2009. Adherence problems in patients with serious andpersistent mental illness. The Expert Consensus Guideline Series.

Ware Jr., J.E., Sherbourne, C.D., 1992. The MOS 36-item short-form healthsurvey (SF-36). I. Conceptual framework and item selection. Med. Care30 (6), 473–483.

Webb, C., Pfeiffer, M., Mueser, K.T., Gladis, M., Mensch, E., DeGirolamo, J.,Levinson,D.F., 1998. Burden andwell-being of caregiversfor theseverelymentally ill: the role of coping style and social support. Schizophr. Res.34 (3), 169–180.

WMA, 2008. Declaration of Helsinki. Ethical Principles for Medical Research

Involving Human Subjects, World Medical Association, General Assem-bly, Seoul, October. 2008.

Wright, B., Stone, M., 1979. Best Test Design: Rasch Measurement. MESAPress, Chicago.

Wright, B., Linacre, J., Chicago, I., 2001. Winsteps: A Rasch Model ComputerProgram, Version 3.31. MESA Press.

Zumbo, B., 1999. Handbook on Theory and Methods of Differential ItemFunctioning (DIF). National Defense Headquarters, Ottawa.





schizo caregiver qol

Documents