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Quality of life and needs for care of patients with schizophrenia
Meijer, C.J.
Publication date
2005
Link to publication
Citation for published version (APA):
Meijer, C. J. (2005). Quality of life and needs for care of patients with schizophrenia.
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Qualityy of Life and Health Related Quality of Life
inn patients with schizophrenia
C.J.. Meijer
M.A.G.. Sprangers
M.W.J.. Koeter
A.H.. Schene
S u m m a r y y
I n t r o d u c t i o n n
Thee concept 'Quality of Life' (QoL) has become increasingly important as an outcome measure inn the evaluation of services and in clinical trials of people with schizophrenia. However, there iss still not much consensus about the concept and definition of QoL. This study focuses on thee General QoL and the Health Related QoL of a group of outpatients with schizophrenia.
Method d
Wee assess which patient and illness characteristics best predict the General QoL of patients 4 gg and to what extent this relationship is mediated by patient's Health Related QoL.
Results s
Wee found that patient's General QoL is predicted mainly by anxiety and depression as well ass self-esteem. Health Related QoL appears to be an important mediator of the relationship betweenn these predictors and patient's General QoL.
Conclusion n
Thee results of this study are important for understanding more fully the relationship between differentt conceptualisations of QoL. Further, they provide mental health professionals more insightt in the mechanisms by which they could improve the General QoL of their patients withh schizophrenia.
3 . 11 I n t r o d u c t i o n
Forr most patients, schizophrenia is a severe and long-term mental illness for which no curee is yet available. The major goal of contemporary mental health services is to maintain function,, promote rehabilitation and maximise quality of life (QoL) of patients with schi-zophreniaa (1). During the last two decades, the measurement of QoL in patients with long termm mental illness has become increasingly popular ( 2 , 3 ) . Despite its relevance, there is stilll a lack of consensus regarding the concept and definition of QoL and so far only a few psychometricallyy sound instruments have become available (4,5,6). In psychiatry, the focus hass been primarily on 'General QoL', comprising an indication of subjective life satisfaction onn several important life domains. Usually this approach is supplemented with objective QoL indicatorss of these domains (for example: 'how satisfied are you with the number of friends youu have', versus vhave you actually visited a friend in the past week'). This approach has resultedd in several widely used General QoL-instruments such as Lehman's Quality of Life Intervieww (5) and based on that the Lancashire Quality of Life Profile (7).
Moree recently, Health Related Quality of Life (HRQoL)-instruments were introduced in psychiatry.. These were originally developed in a somatic context. HRQoL deals with the subjectivee experience of the consequences of a particular disease. As such, it focuses on functionall status and sense of well being, but only in direct relation to health (for example rolee limitations due to mental or physical problems). Examples of HRQoL-instruments also usedd in psychiatry are the Medical Outcome Study Short Form-36 (SF-36) (8, 9,10,11) and thee Sickness Impact Profile (12). In an earlier study, we found that General QoL measured byy the LQoLP and HRQoL measured by the SF-36 reflect different QoL constructs (8). In thee current study, we want to further explore these two conceptualisations of QoL and their relationn to patient and illness characteristics. Previous studies found a relationship between QoLL and symptomatology (13,14,15,16,17). There is also evidence f o r a relationship of QoL withh patient's self-esteem (18,19,20), social network and social integration (14,21,22).
Inn this study, we will assess the extent to which patient and illness characteristics can pre-dictt the General QoL of patients with schizophrenia and to what extent this relationship is mediatedd by patient's evaluation of their HRQoL. We expect more direct indicators of illness (symptomm severity and social and psychological functioning) to be related to perceived health andd therefore to HRQoL. This would make HRQoL an important mediator of the relationship betweenn patient characteristics and General QoL. Other characteristics (such as self esteem andd social integration) are expected to be more directly related to the way in which patients perceivee their General QoL. For the latter characteristics HRQoL is hypothesised to be only aa modest mediator of their relation to General QoL, Beside a better understanding of the relationshipp between two QoL constructs, the study aims to provide information to clinicians withh regard to the determinants of the General QoL of their patients in order to help them too focus their interventions.
Summarising,, the goals of this study are to assess:
-- Which patient characteristics predict General QoL of patient with schizophrenia -- To what extent the relationship between patient characteristics and General QoL is
3.22 M e t h o d
Studyy s a m p l e and design
Inn a two-step procedure, 143 patients with a diagnosis of schizophrenia (ICD F20) between 188 and 65 years of age were selected from the caseloads of specialist mental health services (in-patient,, outpatient and community) in two regions in the Netherlands: an urban region (Amsterdamm SouthEast) and a rural region (West Friesland). To be eligible for this sample, patientss needed to have been in contact with mental health services during the three-month periodd preceding the start of the study. Amsterdam subjects took also part in the EPSILON studyy of schizophrenia (23). The following exclusion criteria were applied: extended in-patient 4 33 treatment episode for longer than one year (at the moment of selection); current
imprison-ment;; the presence of learning disability, primary dementia, another severe organic disorder andd insufficient knowledge of the Dutch language. The psychiatric diagnosis was confirmed byy research staff based on medical records and clinician information using the Item Group Checklistt (IGC) of the Schedules for Clinical Assessment in Neuropsychiatry (SCAN) (24).
I n s t r u m e n t s s
HealthHealth Related QoL
Healthh Related QoL was assessed by the Medical Outcome Study 36 Item Short Form
(SF-36)(SF-36) (11). This 36-item self-report questionnaire comprises eight scales covering the
followingg domains: general health (GH), physical functioning (PF), role problems due to physicall limitations (RP), mental health (MH), role problems due to emotional limitations (RE),, social functioning (SF), vitality (VT) and bodily pain (BP). Two summary component scales,, a Physical Health Component and a Mental Health Component Summary Scale were constructedd based on the 8 subscale scores, reflecting direct consequences of illness on mentall and physical health (25). The SF-36 has been extensively used and tested for its psychometricc properties in many groups of patients with chronic illness and has an excellent reliabilityy and validity. The instrument also has satisfying psychometric properties among patientss with schizophrenia (8,9,10).
GeneralGeneral QoL
Generall QoL was assessed by the Lancashire Quality of Life Profile (LQoLP), a structured interview,, measuring life domain specific as well as overall QoL. It was developed for people withh severe mental illness (7). The adapted Dutch version of the LQoLP (26) comprises the followingg subscales: satisfaction with health, satisfaction with leisure and social participa-tion,, satisfaction with living situation, satisfaction with family relations, satisfaction with financee and satisfaction with safety. All 25 domain-specific items are combined to form a QoL-sumscoree which in this article will be referred to as 'General QoL'. The LQoLP has a meann administration time of 62 minutes (SD = 25 minutes).
PredictorsPredictors of QoL
Thee following patient characteristics were used to predict General QoL: psychopathology, functioning,, social integration, self-esteem and illness history.
PsychopathologyPsychopathology was assessed by the extended 24-item versions of the Brief Psychiatric RatingRating Scale (BPRS) (27,28). The BPRS is a semi structured interview that
ratespsychopa-thologicall symptoms present during the previous four weeks. The 4-Factor structure used in thiss study was based upon data of the 'EPSILON study in five European countries', in which 4044 patients with schizophrenia participated (29).
Too measure functioning we used the Global Assessment of Functioning Scale (GAF), or Axis VV of DSM IV, a measure of 'psychological, social and occupational functioning' as rated by aa professional caregiver. In this study GAF was rated by a clinician or nurse who had been inn regular contact with the patient in the previous period.
SelfSelf esteem was measured with the Rosenberg Setf-Esteem Scale (30) which contains
itemss that refer to positive self-esteem (a person's sense of positive personal worth) and itemss measuring negative self-esteem (e.g. feelings of worthlessness, a lack of respect for oneselff etc).
SocialSocial integration items were drawn from both the Lancashire Quality of Life Profile (see
above)) and from the Client Socio-Demographic and Service Receipt Inventory- European
VersionVersion (CSSRI) (31). The CSSRI is an interview which records socio-demographic data,
accommodation,, employment, income, and all services received by a patient during the precedingg 6 months.
Dataa analyses
Variabless pertaining to the same type of patient characteristics (e.g. psychopathology) were analysedd in 'blocks'. The block psychopathology for example pertains to the four BPRS sub-scaless described above. For each block of patient characteristics 2 regression models were fitted.. In the first model, the contribution of each block of patient characteristics to General QoLL was assessed using separate univariate linear regression analyses with General QoL as dependentt variable and the variables within the particular block of patient characteristics as independentt variables (table 3.2, model I ) . The Multiple R of this model reflects the amount off variance in General QoL explained by the particular block of patient characteristic(s). The secondd model was used to assess whether the relation between patient characteristics and Generall QoL was mediated by HRQoL. For each block of patient characteristics a stepwise linearr regression procedure was used with General QoL as dependent variable. In the first stepp both SF-36 summary component scaies were entered, in the second step the block of patientt characteristics. R2 change of the second step reflects the amount of variance of Ge-nerall QoL explained by the particular block of patient characteristics that was not mediated byy HRQoL (table 3.2, model I I ) . To assess stability of these relationships, all analyses were repeatedd for patient characteristics and QoL at T2 (Model I I I and IV in table 3.2).
Next,, to assess which patient characteristics are the best predictors of General QoL all blocks off patient characteristics significantly related to General QoL in model I were entered in a stepwisee linear regression model with General QoL as dependent variable (see table 3.3).
RR22 of the resulting model reflects the total amount of variance of General QoL that was ex-plainedd by the patient characteristics. For each step, R2change indicates the extra variance explainedd by the variable entered in this step to the variance explained by the variables alreadyy entered in the previous steps.
Too assess which part of the explained variance is mediated by HRQoL a two step linear re-gressionn procedure was used. In the first step, both HRQoL summary scales were entered, inn the second step all blocks of patient characteristics that were significantly related to Generall QoL were entered. R2 change of the second step reflects the amount of variance of Generall QoL explained by patient characteristics that was not mediated by HRQoL. Again, too assess the stability of the relationships, all analyses were repeated, but now with both dependentt and independent variables measured at T2.
3.33 Results
5 0 0
Thee demographic characteristics of the sample are presented in table 3 . 1 . About 16 % of thee patients were married and more than 50 % of them lived alone. Also more than 50 % off the patients did not have a (paid, voluntary or sheltered) job.
TableTable 3.1 Demographic characteristics (N=143)
Characteristics s Agee (m, sd) 41.32 (10,25) Sexx (% female) 37.6 Maritall status (%) Single/unmarriedd 71.8 Marriedd 15.5 Divorcedd 10.6 Widow/widowerr 2,1 Countryy of birth (%) Netherlandss 71.8 Surinamm 16.2 Otherr 12.0 Educationn (%) Primaryy or less 27,3 Secondaryy 63.3 Tertiaryy 7,9 Otherr 1,5 Livingg situation (%)
Livingg alone (with/without children) 53.5 Withh husband/wife (with/without children) 10.6
Livingg together as a couple 4.9
Withh parents 9.2 Withh other relatives 3.5 Withh others 18.3 Employmentt status (%)
Paidd or self employment 8.5 Voluntaryy employment 9.2 Shelteredd employment 7.1 Unemploymentt 53.3 Housewife/husbandd 14.9 Retiredd 1.4 Otherr 5.6
Off the patient and illness characteristics studied (table 3.2, model I) psychopathology and self-esteemm were substantially related to General QoL, while both functioning (GAF) and sociall integration were weekly related. Gender, age and illness history were not related to Generall QoL. By entering both SF-36 summary component scales first (table 3.2, model I I ) ,, it became clear that HRQoL is a mediator between patient and illness characteristics on thee one hand and General QoL on the other.
TableTable 3.2 Blocks of predictors of General Quality of Life (LQoLP total score) at Tl and T2X P s y c h o p a t h o l o g y y Positt ve N e g a t i v e e A n x i e t y / d e p r e s s i o n n D i s o r g a n i s a t i o n n I l l n e s ss h i s t o r y N u m b e rr of a d m i s Illnesss d u r a t i o n Recentt a d m i s s i o n s R R R R Modell I BB P == 0 . 3 3 0 . 0 0 0 0 . 0 33 n.s. - 0 . 0 55 n.s. - 0 . 5 77 0 . 0 0 - 0 . 0 22 n.s. == 0 . 0 1 n.s. 0 , 0 00 n.s. 0 . 0 55 n.s. 0 . 0 55 n.s. T l l Modell I I (3 3 R2c n a n g ee = - 0 . 0 5 5 -00 0 6 9 9 0 . 0 3 3 R-'cnangee = 0 . 0 3 3 0 . 2 0 0 0 . 0 2 2 0 . 1 0 0 0 . 0 4 4 P P 0 . 0 0 2 2 n.s s nn s 00 00 nn s n.s s nn s. 0 . 0 3 3 n.s s R2 2 R R Modell I I I (3 3 -- 0 . 3 2 - 0 . 1 0 0 - 0 . 1 3 3 00 4 2 -00 15 22 = 0 . 0 5 - 0 . 0 9 9 - 0 . 0 6 6 00 18 P P 0 . 0 0 0 n.s s n.s s 0 . 0 0 0 nn s n.s. . nn s n.s s n.s s T2 2 Modell IV (3 3 R2c h a n g ee = 0 . 1 4 - 0 . 1 4 4 - 0 . 1 3 3 - 0 . 2 6 6 - 0 . 1 1 1 R2c h a n g ee = 0 . 0 5 - 0 . 1 6 6 0 . 0 7 7 0 . 1 4 4 P P 0 . 0 1 1 n.s. . n.s s 0 . 0 3 3 n.s s n.s s n.s s n.s s n.s s R22 = 0.07 0.03 R2c h a n g e = 0.02 Sociall i n t e g r a t i o n Reliablee f r i e n d M a r r i e d d W i d o w e r / d i v o r r R e l a t i o n s h i p p H o u s e h o l d d S e l ff e s t e e m G e n d e rr / Age G e n d e r r Age e ced d R--R2 2 R2 2 == 0 . 1 4 - 0 . 2 5 5 - 0 . 0 2 2 0.25 5 - 0 . 0 6 6 0 . 1 0 0 == 0 . 4 0 == 0 . 0 1 2 - 0 . 1 5 5 0 . 0 7 7 0 . 0 0 5 5 0 . 0 1 1 n.s s 0 . 0 1 1 n.s. . n.s. . 0 . 0 0 0 0 n.s. . n.s. . n.s. . R2c h a n g ee = - 0 . 1 5 5 0 . 1 2 2 0 . 2 1 1 -00 13 - 0 . 0 3 3 R2c h a n g ee = R2c h a n g ee = 0 . 0 1 1 0 . 2 1 1 0 . 1 1 1 0 . 1 7 7 0 . 0 4 4 0 . 0 1 1 n.s s n.s. . 0 . 0 1 1 n.s s n.s s 0 . 0 0 0 n.s s n.s s 0 . 0 2 2 n.s.. R2c h a n g e = 0.05 n.s. -0 0 -0 0 -0 0 0 0 R22 = R22 = -0 0 -0.12 2 -0.20 0 0.09 9 -0.22 2 0.07 7 n.s. . n.s s n.s. . n.s. . n.s s 0.288 0.00 R2 c h a n g e = 0.07 0.009 0.055 n.s. R2c h a n g e = 0.03 n.s. n.s. . n.s. . -0.15 5 0.02 2 n.s. . n.s. .
** Model I & III: separate regression analyses for each block of predictors. The dependent variable is General
QoL.QoL. R- indicates the proportion of variance in General QoL explained by the predictors in that particular block of patientpatient characteristics. Model II & IV: separate stepwise regression analyses, for each block of predictors. The dependentdependent variable is General QoL. HRQoL is entered in the model in a first step; in Che second step the particular blockblock of patient characteristics is entered. R2
change indicates the amount of variance in General QoL explained byby the predictors in question and not being mediated by HRQoL.
Aboutt one third of the effect of psychopathology, half the effect of self-esteem and 20 % of thee effect of global functioning on General QoL was not mediated by HRQoL. The effect of sociall integration however was relatively independent of HRQoL. When the analyses were repeatedd on T2 data (table 3.2, model I I I and IV), we found comparable results; psycho-pathologyy (anxiety / depression) and self esteem were again the most important predictors off General QoL, although the explained variance by self esteem was somewhat lower ( 4 0 % att T l , versus 28 % at T2) and the block 'social integration' no longer was a significant pre-dictorr of General QoL.
51 1
Next,, a stepwise multiple regression analysis was performed with all blocks of patient- and illnesss characteristics (i.e. self-esteem, symptomatology, functioning and social integration) thatt were univariately related to General QoL (table 3.3). The variables self esteem, anxiety // depression and having a reliable friend together explained 4 9 % of the variance of General QoL.. A model with only the two HRQoL summary scales explained 3 1 % of the variance in Generall QoL. Finally, a model with both HRQoL and patient characteristics explained 5 3 % off the variance of General QoL. This means that 2 2 % of the variance in General QoL sco-ress was explained by patient and illness characteristics that were not mediated by HRQoL ( 5 3 % - 3 1 % ) .. Consequently ( 4 9 - 2 2 ) / 4 9 = 5 5 % of the variance in General QoL explained by patientt characteristics was mediated by HRQoL.
Too assess the stability of these findings, the same analyses were repeated on T2 data, Alt-houghh most relations were somewhat weaker, we found a comparable picture. Self esteem wass entered in the model first ( 3 4 % explained variance), followed by the BPRS subscale anxietyy / depression. HRQoL explained 2 6 % of the variance in General QoL at T2; patient characteristicss added 12 % explained variance to the model when HRQoL was entered in aa first step.
TableTable 3.3 Predictors of general Quality of Life (LQoLP total score) at Tl and T2
P ( B )) F p
0.000 72.28 0.00 0.000 49.89 0.00 0.000 35.46 0.00
T2* *
Stepp 1 Self esteem 0.34 0,34 0.46 0.00 24.81 0.00 Stepp 2 Anxiety/depression 0.43 0.09 -0.33 0.01 17.73 0.00
StepwiseStepwise multiple lineair regression analysis with General QoL as dependent variable and all blocks of predictorpredictor variables that were significantly related to general QoL in table 2 as independent variables. OnlyOnly significant predictors of the General QoL score are shown in the table. The same procedure was repeatedrepeated for patient characteristics and General QoL at T2.
3 . 44 Discussion
Thee main goals of this study were to determine the extent to which variance in General QoLL of patients with schizophrenia could be explained by relevant patient characteristics andd to what extent this relation is mediated by HRQoL. Regarding the relationship between patientt characteristics and General QoL, the two main predictors of General QoL in this studyy were anxiety / depression and self-esteem. Others have also found a relationship betweenn psychopathology and QoL of patients with schizophrenia, however their results differr with respect to the type of symptoms that best predict QoL. Some found in particu-larr that psychotic symptoms diminished QoL, either the more positive symptoms (32) or thee negative ones (15). Our study corroborates the results of several studies, which found aa strong negative correlation of QoL with anxiety and/or depression (33,34,13,17). This findingg might be explained by the fact that our study sample consisted mainly of more or lesss stable outpatients with little variance in psychotic symptomatology, while anxiety and depressivee symptoms were reported most often by our population.
Relatedd to this and so less to a surprise, we found a strong relationship between QoL and self-esteem,, corroborating the results of Kemmler et al. ( 1 9 ) , who found a significant re-lationshipp between QoL and psychological well being (including self-esteem and affective state).. A related topic that deserves further attention in future studies is the mediating rolee that self constructs and self esteem may play in the relationship between objective life conditionss and subjective QoL as suggested by Zissi et al. (35).
Wee found only a modest relationship between social integration and General QoL. Of the sociall integration variables in our study 'having at least one reliable friend' was the most importantt predictor of General QoL. Others also found a relationship of QoL with social in-tegrationn characteristics, but in those studies the type of predicting variable differed: the frequencyy of contacts with family and friendship (22), social network characteristics, marital statuss (14,21) and perceived social support from family members and important others 5 2 2 T l ' ' Stepp 1 Stepp 2 Stepp 3 Predictor r Selff esteem Anxiety/depression n Reliablee friend R= = 0.41 1 0.47 7 0.49 9 R R 2 change e 0.41 1 0.06 6 0.02 2 (3 3 0.47 7 -0.29 9 -0.14 4
(36).. In contrast to other studies we did not find a relationship between illness history, age,, gender and QoL. Among others, Gaite et al. (22) found a positive association between QoLL as measured by the LQoLP and age, while others (18,3) found QoL to be higher in less educatedd and in female patients.
Ourr second question focused on the mediating role of Health Related QoL. We found that thee majority of the variance of General QoL explained by patient characteristics was indeed mediatedd by HRQoL. Since psychopathology (anxiety / depression) and self esteem are the mostt important predictors of General QoL, variance mediated by HRQoL pertains mainly to thesee predictors, in accordance to our expectations. The more direct indicators of illness (especiallyy symptom severity) were expected to be most strongly related to perceived health andd therefore to HRQoL. The finding that the influence of self esteem on General QoL was alsoo mediated by HRQoL could be explained by the fact that people with lower self-esteem havee more negative cognitions about themselves, about their future and their ability to performm or maintain activities that could increase their QoL.
Byy studying the relationship between patient characteristics, HRQoL and General QoL we alsoo aimed to provide mental health professionals more insight into the mechanisms by whichh they could enhance General QoL. Overall, our results suggest that by treating anxiety andd depression symptoms and supporting or strengthening self esteem, professionals help theirr patients to improve subjective HRQoL-aspects such as general health, mental health, vitality,, role problems due to physical or emotional limitations and social functioning. I m -provementss on these aspects may in turn enhance their patient's General QoL.
Anotherr point of attention with regard to implications for mental health care, concerns thee reduced physical functioning (expressed in 'physical' HRQoL-scores) of the patients in thiss study. The fact that both summary component scales of HRQoL (physical as well as mentall health) are related to General QoL indicates that consequences of schizophrenia onn patient's functioning and health are far-reaching and diverse. Compared to the general population,, patients with schizophrenia have reduced mean SF-36 scale scores, not only in areass related to mental health but also to physical health and role problems resulting from physicall limitations. A worse physical health in these patients might be a consequence of ann unhealthy lifestyle (insufficient self-care and personal hygiene, unhealthy food, exces-sivee smoking etc), of difficulties in getting adequate medical treatment, of side effects of anti-psychoticc medication.
Wee like to raise a few other points in particular about the two QoL instruments and the con-ceptss they measure. When one considers using QoL as an (outcome) measure, instruments fromm several frameworks can be chosen. Using QoL instruments from different frameworks inn a study might maximise the chance of covering the broad concept of QoL. However in practicee investigators usually aim at a limited number of instruments, and consequently have too choose between several options. Apart from practical considerations (such as feasibility) andd methodological considerations (such as psychometric properties), the choice is also onee of content. If one aims at the evaluation of community mental health care programmes requiringg specific recommendations for changes or new developments, the domain-specific lifee satisfaction approach as measured by the LQoLP may be useful. For medical trials using forr example new antipsychotic medication on the other hand, one might be more interested inn direct consequences on health and functioning (along with specific symptomatology), in whichh case the SF-36 may be a better choice.
AA final issue is the effect of internal 'adaptational' processes that can play a role in a person's evaluationn of his subjective health and QoL. These processes, often referred to as Yesponse shift',, are particularly important when one aims to measure changes in QoL over time. Res-ponsee shift is defined as a change in the meaning of an individual's self reported QoL; this meanss that equal levels of QoL at different time point may have different meanings. Three underlyingg processes may play a role in a response shift: (a) a change in one's internal standardss of measurement (i.e. the meaning of the scale anchors of a particular QoL scale havee changed), (b) a change in the importance attributed to particular aspects or domains off QoL (i.e. a change in values and life goals), or (c) a redefinition of the meaning of QoL itselff (i.e. re-conceptualization) (37). For the patients we studied, resignation to relatively 5 44 deprived living conditions and social comparison with others (38) may alter their standards
withh regard to QoL. Future longitudinal research should elaborate further on the extent too which General QoL and/or HRQoL are 'susceptible' to these processes in patients with schizophrenia. .
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