UvA-DARE is a service provided by the library of the University of Amsterdam (https://dare.uva.nl)
UvA-DARE (Digital Academic Repository)
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.
General rights
It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s)
and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open
content license (like Creative Commons).
Disclaimer/Complaints regulations
If you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please
let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material
inaccessible and/or remove it from the website. Please Ask the Library: https://uba.uva.nl/en/contact, or a letter
to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You
will be contacted as soon as possible.
1.11 I n t r o d u c t i o n
Schizophreniaa is a chronic psychiatric illness that often causes severe limitations in every dayy functioning. In spite of ongoing improvements in the pharmacological treatment of the disorder,, the majority of the patients with schizophrenia continue to experience negative symptomatology,, loss of cognitive skills and abilities and/or psychotic symptoms. Many patientss suffering from this illness experience life long consequences on their daily living thatt extend to many different life domains. In this thesis we will study the consequences off schizophrenia on the lives of patients suffering from this chronic mental illness in more detail.. More specifically we will focus on their perceived needs for care and on their quality off life. We will also investigate the consequences experienced by their family members or otherr informal caregivers.
Ourr main aim is to provide more clarity about the conceptualisation of quality of life and needss for care in schizophrenia, to study the interrelatedness of these concepts as well as theirr relationship with illness severity and other patients variables.
Thee results of this study provide valuable information with regard to
l . T h ee Quality of life (QoL) and needs for care of patients with schizophrenia in two regions inn The Netherlands, an urban and a more suburban region and accordingly the identifi-cationn of mental health care areas that should be improved in order to reduce the unmet needss of patients with schizophrenia and to improve their quality of life.
2.Thee stability of QoL and needs for care within an 18-month period.
3.. Feasibility, validity and reliability of a series of instruments developed to measure these conceptss within the context of mental health service evaluation.
4.. Understanding the relationship of these concepts with illness consequences and other patient-- and external factors.
Inn this introduction first the symptoms and other consequences of schizophrenia on patient's functioningg will be addressed. Second we will provide an overview of developments in health caree for patients with schizophrenia during the last decennia. Third, we will introduce the EPSILONN multicenter study on schizophrenia, a study that preceded and partly overlaps the presentt study. Its goals, instrument description as well as the study results will be summari-sed.. Fourth, the present 'extended Dutch study' is described in term of its aims, the sample andd the instruments. Accordingly we will describe and compare QoL, needs for care and otherr characteristics of patients with schizophrenia in the urban and suburban region that participatedd in this study. Finally, an outline will be given for the remainder of this thesis.
1.22 T h e illness
Schizophreniaa is one of the most serious and invalidating psychiatric illnesses. The yearly incidencee of schizophrenia and related psychotic illnesses is about 1 in 10.000. The risk of developingg schizophrenia during the life time is approximately 0 . 8 % . At the current moment thee total number of patients with schizophrenia is estimated at more than 60.000 (1).
Sincee no cure is yet available, schizophrenia is a chronic condition with life long consequences forr patient's health and functioning in many areas of daily living (2,3). Positive symptoms likee hallucinations and delusions that exacerbate during psychotic phases of the illness are thee symptoms most often associated with schizophrenia. These symptoms are in many casess accompanied by anxiety, depression, suspiciousness or arousal. Aggressive outbursts,
bizarree behaviour and drug addiction are also reported, but less frequently. However, many patientss also suffer from enduring negative and/or disorganised symptomatology, such as flatnesss of affect, apathy and poverty of thought and speech. These symptoms often persist forr longer periods of time (also in the more stabilized phases of the illness), and can be very invalidatingg with regard to the patient's social and societal functioning (4,5,6).
Schizophreniaa mostly develops during adolescence or young adulthood. In general, the illnesss manifests itself earlier in male then in female patients. The onset of schizophrenia cann both be acute (often related to an important life event) or can have a more gradual deterioratingg course with more identifiable prodromal symptoms (7, 8, 9, 10, 1 1 , 12, 13). j _44 This means that schizophrenia often develops in a period (adolescence) in which several
developmentall tasks need to be fulfilled (living on their own, completing education, develop-ingg a social network outside the direct family etc.). Psychotic episodes experienced during thiss period in life (followed by periods of gradual recovery) often result in further limita-tionss in the social-emotional development (12). About 1 0 % of the patients who develop aa first psychotic episode recover completely to the pre-morbid level of functioning. About 7 0 %% of the patients face relapses, especially during the 5 to 10 years following the first psychoticc episode. These psychotic relapses are usually followed by periods of remission; inn these stabilized phases severe negative symptoms can persist however. Another 10 % of thee patients experience psychotic symptoms for the rest of their lives, in spite of adequate (pharmacologic)) treatment.
Inn general, the majority of the patients who do not recover after one psychotic episode can bee treated rather successfully with anti psychotic (AP) medication. When patients are not orr not adequately treated by anti psychotic medication, psychotic exacerbations tend to get worse,, often resulting in far reaching consequences for the patient and his surroundings (13,, 14, 15, 16).
However,, apart from the fact that a minority of the patients does not respond to AP medica-tionn at all, for a larger group of patients some psychotic symptomatology persists. Also, AP medicationn often causes side effects that are experienced as burdensome by patients (such ass extra-pyramidal side effects and weight gain), which diminishes treatment acceptability forr patients and may lead to treatment non-adherence (17, 18). A further complicating is-suee regarding contemporary pharmacological treatment of schizophrenia is that its effect onn negative symptoms and disorganization has not been proven so far.
Symptomss can cause enormous suffering for patients on many domains of daily living. Also,, the family and social network of the patient are usually affected in many ways (19, 20,, 21,22, 23). For patients, consequences as diminished self care, housekeeping (24, 25), depressedd or flattened affect ( 2 6 ) , loss of social skills and future opportunities (27) as well ass the stigmatization that still surrounds the diagnosis of schizophrenia (28, 29, 30) are welll known. For the family and other informal caregivers (spouses, partners), the changed behaviorr of the patient, problems with communication and social interaction, the changed familyy roles and responsibilities, sometimes accompanied by co-morbid drug addiction can causee considerable burden ( 3 1 , 23).
Off the invalidating consequences of schizophrenia described above, some can be considered directt consequences of the illness. Others should be seen as more indirect illness conse-quencess resulting from long-term disability; for example loss of social and leisure skills (many
patientss are not able to finish education or to keep a job that fits their former education andd work level); loss of recourses; impaired autonomy or an inability to fulfill important life roles.. Help or support from mental health services therefore is often needed to increase or enhancee acceptable levels of quality of life for these patients (12, 32, 33).
Ass the needs for care of patients are often long term and stretch to a wide area of life do-mains,, costs of mental health services for people with schizophrenia are substantial (34, 35). Inn a recent study the average costs of services for patients with schizophrenia in a Dutch regionn were estimated at about 6000 euros a year per patient (36). These costs include in-patientt facilities, (protected) living facilities, ambulatory facilities (community mental health services,, case management etc.), day activity- and rehabilitation services.
1.33 Changes in vision and care for people with schizophrenia during the last decennia
Inn the last decades many changes have taken place in the (pro)vision of mental health care (37,, 38, 39). During the 1960-ties hospitalised care for patients with schizophrenia became thee target of ongoing critique. Societal changes, evolving opinions about health care in gen-erall and an increasing influence of patients on what should constitute good mental health caree resulted in a strong movement against hospitalizing patients with psychiatric disorders andd isolating them from society. A process of de-institutionalisation began to develop, which tookk a rather radical approach in countries as the US, the UK and Italy (40, 4 1 , 42, 43) and aa more gradual approach in others, such as The Netherlands (45). One of the aims of the processs of de institutionalisation was the rehabilitation of patients with chronic mental illness intoo the community and a focus on service provision within this community rather than in mentall hospitals. For that goal, community mental health facilities and sheltered houses weree realised. However, it appeared that, especially in countries in which deinstitutionali-sationn had developed in a quick and radical way, society was faced with multiple problems concerningg groups of patients for whom the new (and then still developing) community mentall health services did not suffice (46).
Inn the Netherlands the closure of hospital beds took place more gradual, and community mentall health services were initially used to complement rather then being an alternative for hospitall facilities. However, a trend toward keeping people (longer) in their own homes and relyingg on short (crisis) interventions in hospitals in times of acute exacerbations developed inn The Netherlands as well. Nowadays the estimated number of patients with schizophrenia thatt are still hospitalized is about 8.000 to 10.000. These include long stay wards as well ass sheltered or protected living facilities. The majority of the patients lives independently orr lives with their family or spouse, receiving only ambulatory mental health care from communityy mental health services (with considerable variations in intensity of service use withinn this group). The proportion of the population of patients with schizophrenia that are nott receiving any kind of mental health care can only be rawly estimated. This is the group off patients that either have never been in contact with CMHC's or refuse to adhere to any kindd of treatment regimen from services that were offered to them. Homelessness, self neglectt and substance abuse are frequently reported in this subgroup.
Exampless of interventions that now constitute part of standard care to patients with schizo-phreniaa are psychologically and socially oriented interventions, varying from basic needs (likee housing, healthy food and hygiene) to revalidation and reintegration in the community too the maximal level. Helping and coaching patients by developing and increasing social and
work-relatedd skills (47, 48), educating them about their illness and treatment possibilities ( 4 9 ) ,, helping them find adequate leisure activities or education (50), supporting social and familyy relationships and providing active support to the social network (51) are the focus off many newly developed interventions and treatment programs.
Althoughh expectations about the effectiveness of newly developed interventions and services weree high, this effectiveness has not or only limited been confirmed by scientific evidence so farr in terms of symptom reduction, reduction of psychotic relapse and/or hospitalizations. This inn spite of the efforts that have been made in the past years to distinguish the ingredients effectivee community psychiatric services should entail. Also the organization and implemen-1 66 tation of these services in specific catchment areas proved to be far from simpie.
Abovee effectiveness on the group level, little is known at the individual level about specific needss of schizophrenic patients and their pattern of service utilisation, their preferences andd the discrepancies between their needs and the services available (52). Also, tittle is still knownn about the extent to which services are able to improve / enhance QoL.
1.44 Evaluating n e w d e v e l o p m e n t s in ( a m b u l a t o r y ) m e n t a l health care
Beforee the 1980's evaluations of treatment for people with schizophrenia usually constituted off symptom ratings, performed by a clinician or a trained assessor. This means that there wass an exclusive focus on direct reflections of the illness and their fluctuations over t i m e . Fromm the 80's o n , in the evaluation of treatment for people with schizophrenia a new trend wass initiated in which the (social) functioning of patients became a focus (12), stretching to aa much broader number of life domains on which the illness may have an impact. The social functioningg concept aimed at evaluating handicaps resulting in (social) role problems that couldd be more or less objectively measured (according to pre-defined standards).
Somewhatt later, along with the development of hospital closure, de-institutionalisation and problemss resulting from this approach, the concept of QoL became more important (53, 54,, 56). Where in general medicine the concept of QoL had already gained status, in psy-chiatryy the first studies appeared in the 1980's in The United States and Sweden. It took untill 1995 before the first QoL studies appeared in The Netherlands (57, 58). Also, detailed evaluationss of needs for care of patients with schizophrenia and the extent to which servi-cess could fulfil these needs were performed and different instruments for need evaluation weree developed and refined (59, 60, 6 1 , 62, 63). Especially the QoL concept in psychiatry stronglyy relied on social role theories, implicating the multi-dimensionality of the concept, andd emphasizing the importance of subjective evaluations of what contributes to acceptable orr desired standards of living and levels of well-being.
Thirdly,, also as a consequence of deinstitutionalisation, it became apparent that an impor-tantt part of the caring tasks was brought back to the families and other informal caregivers off patients with schizophrenia. Examples from overburdened family systems increased, critiquee on the mental health care system from the family member's board became louder andd increasing attention was asked for the devastating consequences for families as well as patientss when the balance of the informal care system becomes overburdened (22). I n s t r u -mentss to evaluate specific consequences for informal caregivers resulting from the caring role,, their impact on the health and wellbeing of these caregivers as well as the caregivers' needss for help and support were developed.
However,, to reliably evaluate the needs for care and QoL of patients with schizophrenia and theirr caregivers, hiats in research still exists with regard to 1. Definition and conceptualisation off the concepts needs for care, QoL and family burden; 2. Availability of reliable, feasible and culturallyy adapted instruments to evaluate these concepts, which also allow the evaluation off differences in outcome between patients in different countries; 3. Relationships between thee above described concepts and relationships with patient- and external variables.
1.55 The EPSILON study
Too provide more clarity with regard to the above described topics in schizophrenia service evaluationn research, a multicenter study was carried out in five European countries (England, Denmark,, Italy, Spain and The Netherlands). The aims of this EPSILON Study (European Psychiatricc Services: Inputs Linked to Outcome domains and Needs) were: 1. To produce standardisedd versions of four key research instruments measuring the concepts needs for care,, consequences for informal carers, service satisfaction and QoL; 2. To compare the characteristicss of people with schizophrenia and their carers in these five countries; 3. Too investigate relationships between the four concepts mentioned; 4. To compare results fromm this study in the five countries. Full details of the procedures are given by Becker and otherss (64).
1.5.11.5.1 Population
CharacteristicsCharacteristics of the EPSILON-sample Thee following criteria were used in all centers:
InclusionInclusion criteria: patients were aged between 18 and 65, inclusive, had an ICD-10 F20 diagnosiss (schizophrenia) and had been in contact with mental health services during the 3-monthh period preceding the start of the study.
ExclusionExclusion criteria : patients residing in prison, secure residential services or hostels for long-termm patients; co-existing learning disability (mental retardation); primary dementia orr other severe organic disorder; and extended in-patient treatment episodes longer than onee year. These criteria were laid down in order to avoid bias between sites due to variation inn the population of patients in long-term institutional care, and to concentrate on those in currentt 'active'care by specialist mental health teams.
First,, administrative prevalence samples of people with ICD-10 diagnosis of any of F20 to F25 inn contact with mental health services were identified either from psychiatric case registers (Copenhagenn and Verona) or from the case-loads of local specialist mental health services (inpatient,, outpatient and community). Second, cases identified were diagnosed using the Item Groupp Checklist (IGC) of the Schedule for Clinical Assessment in Neuropsychiatry (SCAN). Onlyy patients with an ICD-10 F20 (schizophrenia) research diagnosis were included in the study.. The number of patients varied from 52 to 107 between sites, with a total of 404.
1.66 Results f r o m the EPSILON study
1.6.11.6.1 Needs for Care: the Camberwell Assessment of Need
TheThe Camberwell Assessment of Need - European Version (CAN-EU) (65) is a structured intervieww that identifies the existence of a need for care on 22 life domains. For this study onlyy the patient-version was administered. The patient is asked whether in the past four weekss on a particular life domain there was either no problem, a problem for which adequate (formall or informal) care was received (met need) or whether there was a serious problem (unmett need) on that life domain. Three summary scores can be computed: the total
num-berr of needs, the total number of met needs and the total number of unmet needs. The summaryy scores for the CAN-EU (total, met and unmet needs) were found to be generally reliablee over time and between raters. Despite some evidence for differences in levels of reliabilityy between sites for unmet needs at test-retestand between raters for all three total scores,, the results were good at each site, and encouraging for the use of this instrument inn its five translations. From the domains, patients reported on average about 5 to 6 needs forr care, of which about one third was not fulfilled by mental health services. Unmet needs weree found in particular on the domains day activities, company, treatment of psychotic s y m p t o m s ,, psychological distress, and information about symptoms and treatment.
j_gg 1.6.2 Caregiver Consequences: the Involvement Evaluation Questionnaire
Thee Involvement Evaluation Questionnaire (IEQ) (66) was developed to measure the con-sequencess of psychiatric disorders for patient's relatives. Relatives are asked to rate the extentt to which they were involved in caregiving behaviours with regard to the following domains:: 1. Worrying about the patient and the patient's health; 2. Urging the patient to participatee in healthy behaviours (for example with regard to self care); 3. Supervision on thee patient's behaviours (for example on medicine intake); 4. The experience of interper-sonall strain in the relationship with the patient. The reliability of the IEQ scales was found too vary across sites, but was generally sufficient. A simultaneous component analysis in whichh factor analyses of all five separate data sets were compared indicated that the IEQ subscaless sufficiently cover all five samples.
1.6.31.6.3 General subjective Quality of Life: The Lancashire Quality of Life Profile Generall QoL was assessed by the Lancashire Quality of Life Profile (LQoLP) (67), a structured interview,, measuring domain-specific as well as overall quality of life. The instrument was developedd for people with a severe mental illness. The respondent has to rate his satisfaction withh a particular life domain on a 7-point-scale, ranging from "can't be worse" to "can't be better".. All domain-specific items are combined to form a QoL-sumscore which is referred too as 'general QoL'. In general, the internal consistency and reliability of the LQoLP was foundd to be good. Lowest internal consistency was found for the subjective domains 'work andd leisure'. There were significant differences between the sites in internal consistency on thee nine subscales but not on the total Life satisfaction Scale.
1.6.41.6.4 Satisfaction with services: The Verona Service Satisfaction Questionnaire Servicee satisfaction was assessed by the Verona Service Satisfaction Questionnaire (68). Thiss self report instrument measures patient's satisfaction with services in the areas: profes-sional'ss skills and behaviour, information, access to services, efficacyof the services, specific interventionss and involvement of relatives. The VSSS-EU showed good overall psychometric propertiess and the results suggests that it is a reliable instrument for measuring patient's satisfactionn with mental health services across Europe.
1.6.51.6.5 Comparisons between the sites
Comparingg the sites, it appeared that patients from the Amsterdam and the London site (thee large urban sites) reported significantly more needs for care compared to the other countries.. Amsterdam patients reported most unmet needs on the domains daytime ac-tivities,, physical health, psychological wellbeing and intimate relationships. Regarding caregiverr consequences, in general more negative caregiver consequences were reported inn London, Verona and (to a lesser extent) Santander compared to both the Amsterdam andd the Copenhagen site. Comparing subjective QoL results between the sites, patients in
Copenhagenn were most satisfied with their lives on the majority of the domains, whereas patientss in London reported lowest life satisfaction scores. In spite of the relatively high numberr of unmet needs reported by the Amsterdam group on the domains physical and mentall health, life satisfaction on related domains of the LQoLP was relatively high.
Relationshipss of the concepts with other patient- and illness characteristics revealed that higherr age of patients was associated with less service costs, but with more caregiver burden. Higherr educational level was associated with higher level of functioning. Patients belonging too ethnic minority groups reported more unmet needs, whereas their family member re-portedd less negative caregiving consequences. More symptomatology was associated with moree unmet needs, more service costs and more caregiver consequences. More current symptomatologyy (especially positive symptoms and anxiety and depression) was associated withh lower levels of functioning and lower subjective QoL. Patients with a job had higher levelss of functioning, they reported higher levels of QoL and less service costs. Having an intimatee relationship was associated with higher levels of functioning, whereas having a reliablee friend was associated with both higher functioning and better QoL.
Concluding:: The EPSILON study provided a number of instruments for evaluating care andd QoL of people with schizophrenia and their informal caregivers. The instruments were translatedd and evaluated in five European countries, and have adequate psychometric properties.. Also the instruments revealed differences between the five sites in needs, QoL, servicee satisfaction and caregiver consequences. These differences may be attributed to urbanisationn level, cultural differences or to differences in service provision.
1.77 The Dutch e x t e n d e d study
Inn The Netherlands an additional study was carried out following the EPSILON study des-cribedd above. The aims of the Dutch extended study included the following:
l.Too add a sample of about the same size in a more suburban catchment area to the urban Amsterdamm site that took part in the EPSILON study. The goal of adding this catchment areaa was to increase generalisibility of the results to a broader sample of outpatients withh schizophrenia in The Netherlands and to allow comparisons between an urban and aa more suburban catchment area with regard to patient characteristics, service provision andd service use, QoL and needs for care.
2.. To investigate stability of needs, QoL and relationships between these concepts over time byy adding a longitudinal component to the study (two assessments within an 18-month timee interval).
3.. To add another QoL instrument stemming from a different tradition and compare the two instrumentss regarding reliability, feasibility and underlying structure.
4.Too investigate in more detail relationships between the above described concepts (needs forr care, quality of life and caregiver consequences) and their respective relationships to patient-- and illness characteristics.
Wee will report the results of this extended study in two ways. Because a comparison of the twoo Dutch catchment areas has been described elsewhere (1), we will summarize these inn the following paragraph. The other themes as mentioned above will be described in the nextt chapters of this thesis.
1.7.11.7.1 Characteristics of the extended Dutch sample
Thee extended Dutch study captured two catchment areas in The Netherlands: the urban Amsterdamm site and a suburban region in the North-West part of The Netherlands (West Friesland).. The same in- and exclusion criteria and sampling procedure as reported for the EPSILONN study described above were used for the extended Dutch sample. Eventually 143 Dutchh patients were included in the study. Eighteen months after the first assessments, all patientss were contacted again by the research group for a second assessment; 111 patients ( 7 8 % )) participated in this second assessment. Reasons for dropout were: patient's refusal ( 1 3 % ) ,, patients feeling too ill to participate ( 3 % ) , or patients lost to follow-up (the research teamm was not able to trace and contact the patient: 6%).
2 0 0
DescriptionDescription of the sites
Amsterdamm Southeast is a 30-year-old suburban region with a population of about 110.000 inhabitants.. Many inhabitants stem from varying ethnic cultures (about 60 ethnic groups). Populationn density is estimated at 4021 inhabitants per squared kilometre. The unemploy-mentt rate was about 23 % during the period this study was administered. In the time this studyy was carried out, mental health services for people living in this catchment area were inn an early phase of closer cooperation between local intramural care provision (psychiatric hospital),, the academic medical centre, outpatient care (then offered by the Regional Insti-tutess for Ambulatory Mental Health Care), day activity centres and rehabilitation services.
Westt Friesland is a suburban region, but with a more rural character compared to the Am-sterdamm site. The catchment area roughly comprises the area surrounding four small cities (Hoorn,, Enkhuizen, Medemblik and Schagen). The total catchment area population consist off about 220.000 inhabitants. The population density is estimated at 524 inhabitants per squaredd kilometre. Unemployment rate was about 6 . 5 % during the period this study was administered.. Mental health services in this area also were in an early stage of cooperation betweenn different services for patients with severe mental disorders. Initial service provision inn this area consisted of a psychiatric hospital, a Regional Institute for Ambulatory Mental Healthh Care and a service offering protected living facilities for patients with severe mental disorders. .
1.88 Description of the extended Dutch sample and comparison between the two Dutch sites
Aboutt two-thirds of the patients were male and their mean age was about 40 years. Re-gardingg education, living situation, marital status, income and occupational status, the two regionss were found to be highly comparable. As is shown in table 1.1, about half of the pa-tientss were living independently, about 1 0 % lived with a partner/spouse, almost all patients (moree than 90%) received welfare benefits, about two-thirds was unmarried, more than 5 0 %% of the patients did not have a (paid or voluntary) job, about 1 0 % had some kind of voluntaryy job occupation and one in fourteen patients was participating in a sheltered work project.. The only significant difference between the two sites was found for ethnic group (aboutt 3 0 % of the Amsterdam patients were from Surinam).
1.8.11.8.1 Illness severity
Regardingg illness severity patients in West Friesland suffered from somewhat more serious illnesss consequences compared to the Amsterdam patients. The first group experienced moree serious symptoms (especially anxiety / depression and cognitive symptoms / disorga-nisation).Thee level of overall functioning was in accordance with these results: GAF scores
ratedd by their clinician were on average 10 points lower for the West Friesland group. Also patientss in this area reported significantly more somatic illness / physical handicaps.
1.8.21.8.2 Psychiatric History
Mostt patients had been in contact with mental health services for longer periods of time, on averagee from the age of 25 years. In a 15-year period patients had experienced on aver-agee 4 hospitalisations; however the variance in both the number of hospitalizations and the durationn of the longest period of hospitalisation was large.
1.8.31.8.3 Service provision and service use
Regardingg service provision, the number of psychiatric hospital beds per 100.000 inhabitants 2i
(olderr than 18 years of age) was higher in the West Friesland site. The Amsterdam site on thee contrary offered three times as much facilities for protected or sheltered living. Thee use of mental health services was found to be higher for the Amsterdam site (this holds forr the average number of inpatients days during the previous three months, for use of day activityy centers as well as general ambulatory mental health services).
1.8.41.8.4 Substance abuse
Lifee time alcohol abuse was reported slightly more often in West Friesland, whereas drug abusee was more common in the Amsterdam site. Differences regarding life time substance abusee were relatively small however. Contemporary use of cannabis was found to be twice ass high in the Amsterdam site. However, overall reported cannabis use was rather low here ass well compared to other studies.
1.8.51.8.5 Subjective needs For care
Ass is shown in table 1.2, most unmet needs for care as measured by the Camberwell As-sessmentt of Need were reported on the domains daytime activities, psychotic symptoms, psychologicall wellbeing, and social contacts. Also, getting some kind of help with finding or maintainingg a satisfying intimate relationship was regarded as an unmet need by about 4 0 % off the patients in both sites. The overall number of needs for care (both met and unmet) wass somewhat higher for the West Friesland site (on average 7.2 needs for care, (of which 3.22 unmet needs) for the West Friesland site compared to 5.9 needs for care (of which 2.5 unmett needs) for the Amsterdam site respectively). This is in accordance with the results reportedd on illness severity. Individual domains of needs for care most frequently reported weree highly similar in both sites; needs for care in the areas of personal safety and needs forr public transport were reported somewhat more often in the West Friesland site.
1.8.61.8.6 Caregiver Consequences
Patientss in the Amsterdam site reported to have slightly less contact with family members comparedd to the West Friesland site. The Involvement Evaluation Questionnaire captures fourr domains of which two reflect more intra-psychic dimensions (experienced tension or interpersonall strain in the relationship with the patient) and two focus on actions resulting fromm the caring role (supervising patients and urging them to participate in healthy beha-viours).. No significant differences between the sites were found for these domains.
TableTable 1.1 Socio-demographic and clinical characteristics of patients in the two Dutch regions 2 2 2 Sexx (% m a l e ) Agee ( m , sd) E t h n i c i t yy (%) E u r o p e a n n S u r i n a m m O t h e r r E d u c a t i o nn ( h i g h e s t f i n i s h e d , %) P r i m a r yy e d u c a t i o n S e c o n d a r yy e d u c a t i o n H i g h e rr e d u c a t i o n O t h e r r M a r i t a ll s t a t u s (%) U n m a r r i e d d M a r r i e d d D i v o r c e d d W i d o w e r r O t h e r r Livingg s i t u a t i o n (%) Livingg alone W i t hh p a r t n e r / spouse W i t hh p a r e n t s W i t hh o t h e r family m e m b e r s W i t hh o t h e r s I n c o m ee { % receiving w e l f a r e b e n e f i t s ) W o r kk s i t u a t i o n (%) Noo j o b H o u s e m a n / w i f e e V o l u n t a r yy j o b S h e l t e r e dd work p r o j e c t W o r k / s t u d y y Psychiatricc h i s t o r y Yearss of c o n t a c t w i t h s e r v i c e s ( m , sd) N u m b e rr of hospital a d m i s s i o n s ( m , sd) D u r a t i o nn longest h o s p i t a l i z a t i o n ( m , sd) Lifee t i m e alcohol abuse (%)
Lifee t i m e d r u g abuse (%) P s y c h o p a t h o l o g y :: BPR5-E ( m , sd) A n x i e t y / d e p r e s s i o n n N e g a t i v ee s y m p t o m s Positivee s y m p t o m s C o g n i t i v ee s y m p t o m s / d i s o r g a n i z a t i o n F u n c t i o n i n g :: GAF ( m , sd) S o m a t i cc illness (%) Physicall h a n d i c a p (%) P s y c h i a t r i cc living facility (%) W e s tt F r i e s l a n d ( N = 7 0 ) ) 6 0 . 0 0 4 2 . 5 5 9 2 . 8 8 4.3 3 2.9 9 2 8 . 4 4 6 4 . 2 2 6.0 0 1.5 5 71.0 0 18.8 8 5,8 8 2.9 9 1.4 4 56.5 5 11.6 6 7.2 2 1.4 4 17.4 4 95.5 5 54.4 4 14.7 7 10.3 3 7.4 4 2.9 9 16.4 4 3.7 7 11.4 4 33.3 3 19.4 4 2.44 4 1.51 1 2.22 2 1.49 9 4 6 . 0 0 4 4 . 3 3 4 6 . 9 9 14.7 7 (10.5) ) (10.3) ) (4.6) ) (24.0) ) (1.19) ) ( 0 . 4 8 ) ) (0.96) ) ( 0 . 3 7 ) ) (10.8) ) A m s t e r d a m m (NN = 73) 64,4 4 39.8 8 52.1 1 28.8 8 19.2 2 26.4 4 62.5 5 9,7 7 1.4 4 71.2 2 12.3 3 15.1 1 1.4 4 0.0 0 50.7 7 9.6 6 11.0 0 5.5 5 19.2 2 9 0 . 4 4 52.1 1 15,1 1 8.2 2 6.8 8 13.7 7 13.9 9 3.9 9 10.5 5 26.4 4 30.6 6 1.98 8 1.42 2 1.93 3 1.33 3 57.6 6 27.4 4 26.4 4 23.3 3 (9.9) ) (9.1) ) (4.0) ) (17.0) ) (1.15) ) (0.45) ) ( 0 . 8 6 ) ) ( 0 , 3 7 ) ) (12.8) ) P P 0.59 9 0.12 2 0,00 0 0.46 6 0.26 6 0.73 3 0.25 5 0.13 3 0.82 2 0.80 0 0.37 7 0.20 0 0.00 0 0.26 6 0.14 4 0.01 1 0 . 0 0 0 0 . 0 4 4 0 . 0 1 1 0.20 0 1.8.71.8.7 Quality of Life
Too capture the broad concept of QoL of the Dutch patients, two QoL instruments were used. Generall QoL was measured by an extended Dutch version of the Lancashire Quality of Life Profile;; this instrument focuses on life satisfaction on several life domains and captures severall objective indicators of QoL (69, 70). The MOS Short Form-36 ( 7 1 , 72) was used to measuree health related QoL (HRQoL), which captures physical and mental health of patients ass well as (role) limitations resulting from health problems. With regard to health related QoL, patientss reported lower average scores (indicating a worse QoL) on all domains (referring too both physical and mental health) compared to the general population. This means that
QoLL is not only impaired on domains related to mental health but patients also suffer from reducedd physical HRQoL. Patients in the West Friesland site reported lower HRQoL on the domainss 'vitality', role problems resulting from physical impairments and social functioning. Regardingg subjective general QoL, defined as the life satisfaction on several life domains, scoress were found to be relatively high (average scores were all >4 on a seven-point scale varyingg from 'very unsatisfied' to 'highly satisfied'). No significant differences between the sitess were found regarding life satisfaction on the six life domains.
1.8.81.8.8 Summarizing differences between the sites
Wee conclude that illness severity in the West Friesland sample seems to be slightly higher comparedd to the Amsterdam site (as is reflected in more anxiety/depression, more cognitive 23
andd disorganised symptoms as well as lower levels of overall functioning). Results regarding illnesss consequences are consistent with this in the sense that the West Friesland patients reportedd more (unmet) needs for care and a worse health related QoL on three of the eight domains.. Differences between the urban and the suburban site seem to be relatively small andd not structural however, because they are only reflected in a minority of the domains capturedd by the instruments used in this study. Also because of the modest sample sizes, the dataa of both sites will be pooled in the five studies described in the following chapters.
1.99 Outline
Inn the following chapters we will describe five studies focusing on needs for care and QoL andd their conceptualisation, their stability over time, their mutual interrelationships as welll as associations with other patient- and illness characteristics. Chapter 2 describes the reliabilityy and feasibility of two QoL instruments: a general QoL instrument (the extended Dutchh version of the Lancashire Quality of Life Profile) and a health-related QoL-instrument (thee Medical Outcome Study Short Form 36-item version). Chapter 3 describes a tentative modell of QoL, and investigates the mediating role of health related QoL in the evaluation off patient's general QoL.
Chapterr 4 focuses on the dynamics of individual needs for care within an 18-month period, andd investigates the relationship between these needs and patient's QoL.
Chapterr 5 describes the relationship between the (number and type of) needs of patients andd the burden experienced by their informal caregivers.
Chapterr 6 identifies subgroups of patients based on their symptom profiles and compares thesee groups accordingly on level of functioning, service use, needs for care and QoL. Chapterr 7 pinpoints and discusses the conclusions that can be drawn from the former chapters,, discusses strengths and shortcomings of the present study and offers recom-mendationss for future research.
TableTable 1.2 Service provision, service use, caregiver consequences, needs for care and QoL of
pa-tientstients in the two Dutch regions
24 4
Servicee provision (per 100.00 inhabitants) Bedss acute
Bedss non-acute Livingg facilities
Servicee use (previous three months) (m, sd) Inpatientt days
Dayy activity center visits
Ambulatoryy visits (m, sd) Policlinic c
Communityy mental health center
Contactt with family members (%) Weeklyy or more often Monthly y
Everyy six month or less
Consequencess for family members (m, sd) Supervising g
Interpersonall strain Urging g
Worrying g
Needss for care (m) Totall need Mett needs Unmett needs Selff care (%)* Safety y Livingg situation Housekeeping Housekeeping Transport t
Informationn about illness Physicall health
Daytimee activities Company y
Psychoticc symptoms Psychologicall wellbeing
Healthh related QoL (m, sd) Generall health (GH) Physicall functioning (PH) Rolee limitations - physical (RP) Vitalityy (VT)
Bodilyy pain (BP) Mentall health (MH)
Rolee limitations - mental (RM) Sociall functioning (SF)
Generall QoL (m, sd) Finance e Health h
Leisuree and social participation Familyy relations Safety y Livingg situation Westt Friesland (NN = 70) 177 7 97 7 89 9 28 8 0.1 1 2.5 5 0.1 1 3.3 3 84.6 6 9.2 2 6.1 1 1.31 1 4.63 3 5.76 6 5.73 3 7.2 2 4.0 0 3,2 2 4.5 5 7.5 5 7.5 5 7.6 6 10.6 6 12.7 7 22.4 4 27.3 3 28.8 8 29.9 9 41.8 8 53.7 7 71.4 4 46.3 3 44.3 3 76.1 1 54.3 3 53.1 1 58.7 7 4.46 6 4.47 7 (0.9) ) (7.5) ) (0.32) ) (4.68) ) (1.82) ) (4.79) ) (3.80) ) (4.30) ) (22.5) ) (21.3) ) (40.5) ) (19.9) ) (26.3) ) (18.5) ) (41.0) ) (28.5) ) (1.30) ) (0.88) ) 4.544 (0.94) 4.64 4 (1.29) ) 5.044 (1.18) 5.33 3 (0.94) ) Amsterdam m <NN = 73) 117 7 59 9 58 8 79 9 1.2 2 16.0 0 1.1 1 5.2 2 68.1 1 22.2 2 9.8 8 0.86 6 3.33 3 4.47 7 5.19 9 5.9 9 3.4 4 2.5 5 1.4 4 1.4 4 6.9 9 4.1 1 1.4 4 19.7 7 12.3 3 30.1 1 33.8 8 25.0 0 35.2 2 56.7 7 76.8 8 69.5 5 54.9 9 69.5 5 60.9 9 64.3 3 69,3 3 4.33 3 4.76 6 4.73 3 (10.5) ) (15.2) ) (3.43) ) (11.47) ) (2.00) ) (3.17) ) (5.32) ) (4.67) ) (21,7) ) (24,8) ) (38.3) ) (20.2) ) (28.1) ) (20.8) ) (43.3) ) (28.2) ) (1,17) ) (0,82) ) (1.13) ) 5.077 (1.02) 4.78 8 5.13 3 (1.33) ) (1.04) ) pp — 0.04 4 0.01 1 0.90 0 0.07 7 0.20 0 0.15 5 0.34 4 0.38 8 0.06 6 0.54 4 0.06 6 0.46 6 0.09 9 0.78 8 0.38 8 0.05 5 0.17 7 0.18 8 0.70 0 0.97 7 0.26 6 0.19 9 0.75 5 0.30 0 0.00 0 0,01 1 0.16 6 0.12 2 0.22 2 0.05 5 0.80 0 0.16 6 0.32 2 0.11 1 0.08 8 0.28 8
ProportionProportion of patients with an unmet need on the particular domain p-valuesp-values are corrected for age, sex and illness duration
R e f e r e n c e s s
1.. Schene, A., Meijer, K., Koeter, M., W i j n g a a r d e n , B. van, Monden, M., ( 2 0 0 4 ) . Mensen m e t schizofrenie:: een urbane en rurale regio vergeleken. I n : Zorg, opvang en begeleiding van
chronischchronisch zieken; Van onderzoeksresultaten naar verbetering van zorg. Red. Groenewegen,
P.P.,, Bos, G.A.M. Van den, Megchelen, P. van. Van Gorcum.
2.. Katschnig, H., ( 2 0 0 0 ) . Schizophrenia and quality of life. Acta Psychiatnca Scandinavica Suppl,
407:33-7. 407:33-7.
3.. Thornicroft, G., Tansella, M., Becker, T., Knapp, M., Leese, M., Schene, A., Vazquez-Barquero, J.L.. and the EPSILON Study Group. ( 2 0 0 4 ) . The personal impact of schizophrenia in Europe.
SchizophreniaSchizophrenia Research. 69 (2-3): 125-32.
4.. Wiersma, D., Wanderling, 1 , Dragomirecka, E., Ganev, K., Harrison, G., An Der Heiden W., Nienhuis,, F.J., Walsh, D. ( 2 0 0 0 ) . Social disability in schizophrenia: its d e v e l o p m e n t and pre-dictionn over 15 years in incidence cohorts in six European centres. Psychological Medicine.
3030 (5): 1155-67.
5.. Sorgaard, K.W., Hansson, L., Heikkila, J., Vinding, H.R., Bjarnason, O., Bengtsson-Tops, A., Merinder,, L , Nilsson, L.L., Sandlund, M., Middelboe, T. (2001). Predictors of social relations inn persons with schizophrenia living in the c o m m u n i t y : a Nordic m u l t i c e n t r e study. Social
PsychiatryPsychiatry and Psychiatric Epidemiology. 36 (l):13-9.
6.. Hobbs, C , Newton, L , Tennant, C , Rosen, A., Tribe, K. (2002). Deinstitutionalization for long-t e r mm menlong-tal illness: a 6-year evalualong-tion. Auslong-tralian and New Zealand Journal of Psychialong-try.
36(l):60-6. 36(l):60-6.
7.7. Di Michele, V., Bolino, F. ( 2 0 0 4 ) . The natural course of schizophrenia and psychopathological
predictorss of o u t c o m e . A c o m m u n i t y - b a s e d cohort study. Psychopathology. 37(2):98-104.
8.. Hafner, H., Maurer, K., R u h r m a n n , S., Bechdolf, A., Klosterkotter, J., Wagner, M., Maier, W., Bottlender,, R., Moller, H.J., Gaebel, W., Wolwer, W. (2004). Early d e t e c t i o n and secondary preventionn of psychosis: facts and visions. European Archives of Psychiatry and Clinical
Neuroscience.Neuroscience. 254 (2): 117-28.
9.9. Andreasen, N.C., Carpenter, W.T. Jr., Kane, J.M., Lasser, R.A., Marder, S.R., Weinberger, D.R.
(2005).. Remission in schizophrenia: proposed criteria and rationale for consensus.
Ameri-cancan Journal of Psychiatry. 162 (3):441-9.
10.. Farmer, A.E., McGuffin, P., Spitznagel, E.L. (1983). Heterogeneity in schizophrenia: a cluster-analyticc approach. Psychiatry Research. 8 (1):1-12.
11.. Drake, R.J., Dunn, G., Tarrier, N., Haddock, G., Haley, C., Lewis, S. ( 2 0 0 3 ) . The evolution of s y m p t o m ss in the early course of non-affective psychosis. Schizophrenia Reseach. 63
(1-2):2): 171-9.
12.. Wiersma, D., Wanderling, J., D r a g o m i r e c k a , E., Ganev, K., Harrison, G., An Der Heiden, W., Nienhuis,, F.J., Walsh, D. ( 2 0 0 0 ) . Social disability in schizophrenia: its development and pre-dictionn over 15 years in incidence cohorts in six European centres. Psychological Medicine.
5:1155-67. 5:1155-67.
13.. Coldham, E.L., A d d i n g t o n , J,, A d d i n g t o n , D. (2002). Medication adherence of individuals with a firstt episode of psychosis. Acta Psychiatrica Scandinavica. 106 (4):286-90.
14.. Lindenmayer, J.P., Khan A. ( 2 0 0 4 ) . Pharmacological t r e a t m e n t strategies for schizophrenia.
ExpertExpert Rev Neurother. 4 (4):705-23.
15.. Bosveld-van Haandel, L.J. Slooff, C.J., Bosch, van den. (2001). Reasoning about the optimal durationn of prophylactic antipsychotic medication in schizophrenia: evidence and a r g u -ments.. Acta Psychiatrica Scandinavica. 103:335-346.
16.. Gitlm, M., Nuechterlein, K., Subotnik, K. L. a.o. (2001). Clinical o u t c o m e following neuroleptic discontinuationn in patients with r e m i t t e d recent onset schizophrenia. American Journal of
17.. Awad, A.G., Voruganti, L.N. ( 2 0 0 4 ) . New antipsychotics, compliance, quality of life, and subjec-tivee t o l e r a b i l i t y - - a r e patients better off? Canadian Journal of Psychiatry. 49 (5):297-302.
18.. Lacro, J.P., Dunn, L.B., Dolder, C R . , Leckband, S.G., Jeste, D.V. (2002), Prevalence of and riskk factors for medication nonadherence in patients with schizophrenia: a comprehensive revieww of recent l i t e r a t u r e . Journal of Clinical Psychiatry. 63 (10)-.892-909.
19.. Magliano, L., Marasco, C , Fiorillo, A., Malangone, C , Guarneri, M., Maj, M. (2002). Working Groupp of the Italian National Study on Families of Persons w i t h Schizophrenia. The impact off professional and social n e t w o r k support on the burden of families of patients with schizo-phreniaa in Italy. Acta Psychiatrica Scandinavica. 106 (4):291-8,
20.. Mueser, K.T., Sengupta, A., Schooler, N.R., Bellack, A.S., Xie, H., Glick, I.D., Keith, S.J. (2001). Familyy t r e a t m e n t and medication dosage reduction in schizophrenia: effects on patient so-2 66 cial f u n c t i o n i n g , family a t t i t u d e s , and burden. Journal of Consulting and Clinical Psychology,
6969 (1):3-12.
2 1 .. Wijngaarden, B. v a n , Schene, A., Koeter, M., Becker, T., Knapp, M., Knudsen, H.C., Tansella, M „„ T h o r n i c r o f t , G., Vazquez-Barquero, J.L., Lasalvia, A., Leese, M. and the EPSILON Study Group.. (2003). People with schizophrenia in five countries: conceptual similarities and inter-culturall differences in family caregiving. Schizophrenia Bulletin, 29(3):573-86.
22.. Schene, A.H., W i j n g a a r d e n , B. v a n , Koeter, M.W. (1998). Family caregiving in schizophrenia: domainss and distress. Schizophrenia Bulletin. 24(4) :609-18.
23.. Foldemo, A., Gullberg, M., Ek, A.C., Bogren, L. (2005). Quality of life and burden in parents of outpatientss with schizophrenia. Social Psychiatry and Psychiatric Epidemiology. 40 (2):133-8.
24.. Ruggeri, M., Lasalvia, A., Tansella, M., Bonetto, C , Abate, M., T h o r n i c r o f t , G., Allevi, L., Og-nibene,, P. ( 2 0 0 4 ) . Heterogeneity of outcomes in schizophrenia. 3-year follow-up of treated prevalentt cases. British Journal of Psychiatry. 184:48-57.
25.. Hansson, L., Sandlund, M., Bengtsson-Tops, A., Bjarnason, O., Karlsson, H., Mackeprang, T., Merinder,, L., Nilsson, L., Sorgaard, K., Vinding, H., Middelboe, T. (2003). The relationship off needs and quality of life in persons with schizophrenia living in the c o m m u n i t y . A Nordic m u l t i - c e n t e rr study. Nordic Journal of Psychiatry. 57 (1):5-11.
26.. Birchwood, M., Iqbal, Z., Upthegrove, R. (2005). Psychological pathways to depression in schizophreniaa Studies in acute psychosis, post psychotic depression and auditory hallucina-t i o n s .. European Archives of Psychiahallucina-try and Clinical Neuroscience. 255 (3):202-12,
27.. Mueser, K.T., Penn, D.L. ( 2 0 0 4 ) . Meta-analysis examining the effects of social skills training on schizophrenia.. Psychological Medicine. 34 (7):1365-7.
28.. Angermeyer, M.C., Beck, M., Dietrich, S., Holzinger, A. ( 2 0 0 4 ) . The stigma of mental ill-ness:: patients' anticipations and experiences. International Journal of Social Psychiatry. 50
(2):153-62. (2):153-62.
29.. E r t u g r u l , A., Ulug, B. ( 2 0 0 4 ) . Perception of stigma among patients with schizophrenia. Social
PsychiatryPsychiatry and Psychiatric Epidemiology. 39 (l):73-7.
30.. Angermeyer, M.C., Beck, M., Matschinger, H. (2003). D e t e r m i n a n t s of the public's preference forr social distance f r o m people w i t h schizophrenia. Canadian Journal of Psychiatry. 48
(10):(10): 663-8.
3 1 .. Magliano, L., Fiorillo, A., De Rosa, C , Malangone, C,, Maj, M. and the National Mental Health Projectt Working Group. ( 2 0 0 5 ) . Family burden in l o n g - t e r m diseases: a comparative study inn schizophrenia vs. physical disorders. Social Science and Medicine. 61 (2):313-22.
32.. Foldemo, A., Bogren, L. (2002). Need assessment and quality of life in outpatients with schi-zophrenia:: a 5-year follow-up study. Scandinavian Journal of Caring Sciences. 16 (4):393-8.
33.. Mercier, C , King, S. (1994). A latent variable causal model of the quality of life and c o m m u -nityy tenure of psychotic patients. Acta Psychiatrica Scandinavica. 89 (l):72-7.
34.. Knapp, M., Mangalore, R., S i m o n , J. (2004). The global costs of schizophrenia. Schizophrenia
35.. Knapp, M. ( 2 0 0 0 ) . Schizophrenia costs and t r e a t m e n t cost-effectiveness. Acta Psychiatrics
ScandinavicaScandinavica Suppl. (407):15-8.
36.. Knapp, M., Chisholm, D., Leese, M., Amaddeo, F., Tansella, M., Schene, A., T h o r n i c r o f t , G., Vazquez-Barquero,, J.L., Knudsen, H.C., Becker, T and the EPSILON study group. (2002). Comparingg p a t t e r n s and costs of schizophrenia care in five European countries: the EPSI-LONN study. European Psychiatric Services: I n p u t s Linked to Outcome Domains and Needs.
ActaActa Psychiatrics Scandinavica. 105 (l):42-54.
37.. Lehman, A.F. (1988). A quality of life interview for the chronically mentally ill. Evaluation and
ProgramProgram Planning. 11:51-62.
38.. Oliver, J., Huxley, P., Bridges, K., M o h a m m a d , H. (1996). Quality of Life and Mental Health
Ser-vices.vices. London & New York: Routledge.
39.. Barry, M.M., Crosby, C. (1996). Quality of Life as an evaluative measure in assessing the i m -pactt of c o m m u n i t y care on people with l o n g - t e r m psychiatric disorders. British Journal of
Psychiatry.Psychiatry. 168:210-216.
40.. Tansella, M., Williams, P. (1987). The Italian experience and its implications. Psychological
Medicine.Medicine. 17 (2):283-9.
41.. Tansella, M. (1986). C o m m u n i t y psychiatry without mental h o s p i t a l s - - t h e Italian experience: a review.. Journal R S Medicine. 79 (11):664-9.
42.. T h o r n i c r o f t G. (1992). The mental hospital closure p r o g r a m m e . British Journal of Hospital
Me-dicine.dicine. 48 (9): 535-7.
43.. T h o r n i c r o f t , G., B e b b i n g t o n , P. (1989). Deinstitutionalisation—from hospital closure to service d e v e l o p m e n t .. British Journal of Psychiatry. 155:739-53.
44.. Duurkoop, P. (1995). Terug naar Amsterdam. Longitudinaal onderzoek naar het functioneren
vanvan chronisch psychiatrische patiënten in nieuwe Woonsituaties. Academisch Proefschrift,
Vrijee Universiteit te A m s t e r d a m .
45.. S y t e m a , S., Burgess, P., Tansella, M. (2002). Does c o m m u n i t y care decrease length of stay andd risk of rehospitalization in new patients with schizophrenia d i s o r d e r s7
A comparative casee register study in Groningen, The Netherlands; V i c t o r i a , Australia; and South-Verona, Italy.. Schizophrenia Bulletin. 28 (2):273-81.
46.. Lehman, A.H., Possidente, S., Hawker, F. (1986). The quality of life of chronic patients in a state hospitall and in c o m m u n i t y residences. Hospital and Community Psychiatry. 37 (9):901-907.
47.. Tsang, H.W. (2001). Applying social skills training in the c o n t e x t of vocational rehabilitation for peoplee with schizophrenia. Journal of Nervous and Mental Disease. 189 (2):90-8.
48.. Holzner, B., Kemmler, G., Meise, U. (1998). The impact of w o r k - r e l a t e d rehabilitation on the qualityy of life of patients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology.
3333 (12):624-31.
49.. Pekkala, E., Merinder, L. (2002), Psycho-education for schizophrenia (Cochrane review). The Cochranee Library O x f o r d .
50.. Crowter, R., Marchall, M., Bond, G et al. (2002). Vocational rehabilitation for people with
se-verevere mental illness (Cochrane review). The Cochrane Library O x f o r d .
5 1 .. Pilling, S., B e b b i n g t o n , P., Kuipers, E. et al. (2002). Psychological t r e a t m e n t s in schizophre-niaa I: meta-analysis of family intervention and cognitive behavioural therapy. Psychological
Medicine.Medicine. 32: 763-782.
52.. Brewin, C.R., Wing, J.K. (1993) The MRC Needs for Care A s s e s s m e n t : progress and controver-sies.. Psychological Medicine. 23 (4):837-41.
53.. Malm, U., May, P.R., Dencker, S J . (1981), Evaluation of the quality of life of the schizophrenic o u t p a t i e n t :: a checklist. Schizophrenia Bulletin. 7 (3):477-87.
54.. Lehman, A.F. (1983). The effects of psychiatric s y m p t o m s on quality of life assessments amongg the chronic mentally ill. Evaluation and Program Planning. 6 (2):143-51.
55.. Lehman, A.F., Ward, N,C, Linn, L.S. (1982). Chronic mental p a t i e n t s : t h e quality of life issue.
AmercanAmercan Journal of Psychiatry. 139 (10):1271-6.
56.. Lehman, A.F. (1983). The well-being of chronic mental patients. Archives of General
Psychia-try.try. 40 (4);369-73.
57.. Boevink, W.A., Wolf, J.R.L.M., Nieuwenhuizen, Ch. Van, Schene, A . H . (1995a). Kwaliteit van levenn van langdurig van zorg afhankelijke psychiatrische p a t i ë n t e n ; een conceptuele ver-kenning.. Tijdschrift voor Psychiatrie. 37 (2): 97-110.
58.. Boevink, W.A., Wolf, J.R.L.M., Nieuwenhuizen, Ch. Van, Schene, A . H . (1995b). Weldoen en wel-bevinden.. Over de zorg voor mensen m e t psychische handicaps en hun kwaliteit van leven.
Gezondheid-Gezondheid- Theorie in praktijk. 3 (2):208-222.
2 88 5 9
- Brewin, C R . , Wing, J.K., Mangen, S.P., Brugha, T.S., MacCarthy, B, (1987). Principles and practicee of measuring needs in the l o n g - t e r m mentally ill: the MRC needs for care assess-m e n t .. Psychological Medicine. 17 (4):971-81.
60.. Bebbington, P., Brewin, C R . , Marsden, L., Lesage, A. (1996). Measuring the need for psychiat-ricc t r e a t m e n t in the general p o p u l a t i o n : the c o m m u n i t y version of the MRC Needs for Care Assessment.. Psychological Medicine. 26 (2):229-36.
6 1 .. Lesage, A.D., Fournier, L., Cyr, M., Toupin, J., Fabian, J., Gaudette, G., Vanier, C , Bebbington, P.E.,, Brewin, C.R. (1996). The reliability of the c o m m u n i t y version of the MRC Needs for Caree Assessment. Psychological Medicine. 26 (2):237-43.
62.. Phelan, M., Slade, M., T h o r n i c r o f t , G., Dunn, G., Holloway, F., Wykes, T., S t r a t h d e e , G., Loftus, L.,, McCrone, P., Hayward, P. (1995). The Camberwell Assessment of Need: the validity and reliabilityy of an i n s t r u m e n t to assess the needs of people with severe m e n t a l illness. British
JournalJournal of Psychiatry. 167 (5):589-95.
63.. Slade, M,, Phelan, M., T h o r n i c r o f t , G., Parkman, S. (1996). The Camberwell Assessment of Needd (CAN): comparison of assessments by staff and patients of the needs of the severely mentallyy ill. Socical Psychiatry and Psychiatric Epidemiology. 31 (3-4):109-13.
64.. Becker, T., Knapp, M., Knudsen, H.C., Schene, A.H, et al. (1999). The EPSILON study of schi-zophreniaa in five European countries. Design and methodology for standardising o u t c o m e measuress and comparing patterns of care and service costs. British Journal of Psychiatry.
175:175: 514-521.
65.. McCrone, P., Leese, M., T h o r n i c r o f t , G., Schene, A.H., Knudsen, H.C., Vazquez-Barquero, J.L., Lasalvia,, A., Padfield, S., White, I.R., Griffiths, G. (2000). Reliability of t h e Camberwell As-sessmentt of Need—European Version. EPSILON Study 6. British Journal of Psychiatry, Suppl.
(39):s34-40. (39):s34-40.
66.. Wijngaarden B. v a n , Schene, A . H . , Koeter, M., Vazquez-Barquero, J.L., Knudsen, H.C., Lasal-via,, A., McCrone, P. ( 2 0 0 0 ) . Caregiving in schizophrenia: d e v e l o p m e n t , internal consistency andd reliability of the I n v o l v e m e n t Evaluation Questionnaire—European Version. EPSILON Studyy 4. British Journal of Psychiatry, Suppl. (39):s21-7.
67.. Gaite, L., Vazquez-Barquero, J.L., Arrizabalaga, A., Schene, A.H., Welcher, B., T h o r n i c r o f t , G., Ruggeri,, M., Vazquez-Bourgon, E., Perez Retuerto, M., Leese M. ( 2 0 0 0 ) . Quality of life in schizophrenia:: d e v e l o p m e n t , reliability and internal consistency of the Lancashire Quality of Lifee Profile—European Version. EPSILON Study 8. British Journal of Psychiatry, Suppl. (39):
S49-54. S49-54.
68.. Ruggeri, M., Lasalvia, A., Dall'Agnola, R., W i j n g a a r d e n , B. v a n , Knudsen, H.C., Leese, M., Gai-t e ,, L., Tansella, M. ( 2 0 0 0 ) . DevelopmenGai-t, inGai-ternal consisGai-tency and reliabiliGai-ty of Gai-the Verona Servicee Satisfaction Scale—European Version. EPSILON Study 7. British Journal of
Psychia-try.try. 39 (suppl.):s41-8.
69.. Nieuwenhuizen, Ch. van, Schene, A . H . , Koeter, M.W., Huxley, PJ. (2001). The Lancashire Qua-lityy of Life Profile: modification and psychometric evaluation. Social Psychiatry and
Psychia-trictric Epidemiology. 36 (l):36-44.
70.. Nieuwenhuizen Ch, van, Schene, A., Boevink, W., Wolf, J. (1998). The Lancashire Quality of Lifee Profile: first experiences in The Netherlands. Community Mental Health Journal. 34
7 1 .. McHorney, C A . , Ware, J.E. Jr., Raczek, A.E. (1993). The MOS 3 6 - I t e m Short-Form Health Sur-veyy (SF-36): I I . Psychometrie and clinical t e s t s of validity in measuring physical and mental healthh constructs. Medical Care. 31 (3):247-63,
72.. Ware, J.E. Jr., Sherbourne, C D . (1992). The MOS 3 6 - i t e m s h o r t - f o r m health survey (SF-36). I. Conceptuall f r a m e w o r k and item selection. Medical Care. 30 (6):473-83.
