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SUPPLEMENT |
Department of Psychiatry, University of Leipzig, Germany
Institute of Psychiatry, King's College, London, UK
Institute of Preventive Medicine, Copenhagen University Hospital, Denmark
Department of Psychiatry, Academic Medical Centre, Amsterdam, The Netherlands
Department of Medicine and Public Health, University of Verona, Italy
Clinical and Social Psychiatry Research Unit, University of Cantabria, Santander, Spain
Correspondence: Professor Thomas Becker, Department of Psychiatry, University of Leipzig, Liebigstrasse 22b, D-04103 Leipzig, Germany. Tel: +49 341 972 4401; fax: +49 341 960 4409
Study coordinating centre: Professor Graham Thornicroft, Health Services Research Department, Institute of Psychiatry, King's College London, De Crespigny Park, Denmark Hill, London SE5 8AF
Declaration of interest No conflict of interest. Funding detailed in Acknowledgements.
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONAIMSSTUDY INSTRUMENTSSTUDY SITESCONTENTS AND OUTLOOKACKNOWLEDGMENTSREFERENCES |
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Aims To describe the aims, outcome measures, study sites and patient samples of the EPSILON Study.
Method, results, conclusions See companion papers in this supplement.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONAIMSSTUDY INSTRUMENTSSTUDY SITESCONTENTS AND OUTLOOKACKNOWLEDGMENTSREFERENCES |
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AIMS |
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TOPABSTRACTINTRODUCTIONAIMSSTUDY INSTRUMENTSSTUDY SITESCONTENTS AND OUTLOOKACKNOWLEDGMENTSREFERENCES |
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The instruments used assess a variety of dimensions of the care process, such as needs for care, service utilisation and costs, informal carer involvement, quality of life and service satisfaction. This research instrumentation was used to study care for people with schizophrenia in five centres cross-sectionally in a sample of patients in contact with secondary mental health services. The EPSILON Study aims: (a) to produce standardised versions of five key research instruments in five languages; (b) to compare data about social and clinical variables, mental health care and costs; and (c) to test instrument-specific and cross-instrument hypotheses. Facilitating future cross-national research into care for the severely mentally ill is a central objective of the EPSILON Study. This paper gives a brief outline of the aims and design of the study and the patient sample.
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STUDY INSTRUMENTS |
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TOPABSTRACTINTRODUCTIONAIMSSTUDY INSTRUMENTSSTUDY SITESCONTENTS AND OUTLOOKACKNOWLEDGMENTSREFERENCES |
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Some characteristics of these instruments are outlined in Table 1.
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Patients' needs
The CAN (which became CAN-EU), an interviewer-administered instrument, was
used to assess patients' needs (Phelan
et al, 1995). It comprises 22 individual domains of need
(accommodation, food, household skills, self-care, occupation, physical
health, psychotic symptoms, information about condition and treatment,
psychological distress, safety to self, safety to others, alcohol, drugs,
company of others, intimate relationships, sexual expression, child care,
transport, money, welfare benefits, basic education and telephone).
Service use and cost
The CSSRI-EU (Client Socio-Demographic and Service Receipt Inventory -
European Version) is an adaptation of the CSRI
(Beecham & Knapp, 1992) which, on the basis of an interview, records socio-demographic data,
accommodation, employment, income, and all health, social, education and
criminal justice services received by a patient during the preceding 6 months.
It allows costing of services received on the basis of unit cost data.
Caregiving consequences
The IEQ (adapted IEQ-EU) is an 81-item questionnaire measuring the
consequences of psychiatric disorders for relatives of patients
(Schene & van Wijngaarden,
1992). It contains six sections: general information on the
patient, caregiver and household (15 items); caregiving consequences of
psychiatric disorders (31 items); extra financial expenses (eight items);
the General Health Questionnaire (GHQ-12); professional help for patients'
relatives (three items); and the consequences for patients' children (11
items). The time frame is the past 4 weeks. Caregiving consequences are
summarised using four scales (tension, worrying, urging, supervision) and a
summary score.
Quality of life
The LQoLP (adapted LQoLP-EU) elicits objective quality of life indicators
and subjective quality of life appraisal through patients' answers to
interviewer-administered questions relating to nine fields: work/education,
leisure/participation, religion, finances, living situation, legal and safety,
family relations, social relations and health
(Oliver et al,
1996).
Service satisfaction
Satisfaction with services was assessed using the VSSS (adapted VSSS-EU), a
self-administered instrument comprising seven domains (global satisfaction,
skill and behaviour, information, access, efficacy, intervention and
relatives' support) (Ruggeri &
Dall'Agnola, 1993).
Other instruments used included the Brief Psychiatric Rating Scale (BPRS 24-item version; Ventura et al, 1993) and Global Assessment of Functioning (GAF; American Psychiatric Association, 1987). These were used in English. Instruments documenting the sampling process (Prevalence Cohort Data Sheet), area socio-demographic descriptors (Area Socio-Demographic Data Sheet) and patients' psychiatric history (Psychiatric History Data Sheet) were developed for the EPSILON Study (available from study co-ordinating centre upon request). Descriptions of site level characteristics included socio-demographic area descriptors, availability of in-patient beds and other service components, and staff availability. The European Service Maping Schedule was also used (Johnson et al, 1998). Data collection in this study was from September 1997 to August 1998.
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STUDY SITES |
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TOPABSTRACTINTRODUCTIONAIMSSTUDY INSTRUMENTSSTUDY SITESCONTENTS AND OUTLOOKACKNOWLEDGMENTSREFERENCES |
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Mental health services in the local area
The mental health services in the Amsterdam South-East catchment area are
in a process of change and integration, and this paragraph describes the
services in January 1998 (while the study was ongoing). The large Santpoort
mental hospital, located 25 kilometres to the west of Amsterdam, has during
the past 5-10 years started to provide services (out-patient, in-patient and
residential) across the city. Having moved to Amsterdam, these services,
formerly hospital-based, are now in the process of integrating with mental
health services which have been available in the city for many years, such as
the Regional Institute for Ambulatory Mental Health Care (RIAGG) and the
Department of Psychiatry at the Academic Medical Centre (AMC).
Since 1998 these three organisations (Santpoort, RIAGG and AMC) have been merged into one organisation called De Meren, with three separate services, for people aged over 65, 18-64, and below 18 years. For the adult population this new organisation offers out-patient services in three locations: the former RIAGG, the out-patient department formerly at Santpoort and the AMC out-patient department. These three services have been merged into the Social Psychiatric Service Centre (SPSC). This SPSC has its in-patient units (eight beds on a closed ward, six beds on an open intermediate care ward, 20 beds on an open ward) in the AMC, where a 24-hour emergency room is also available. For long-term patients, non-acute 24-hour staffed residential services and sheltered accommodation are available within the SPSC. Services for the catchment area population also include intensive home care, two shelters for homeless people with mental illness, a day care centre and a vocational rehabilitation centre. The wider context of mental health services in Amsterdam is described in more detail elsewhere (Schene et al, 1998; Becker et al, 1999).
Copenhagen
General area characteristics
Copenhagen is the capital of Denmark, with a total population of about 480
000. Copenhagen is divided into 14 social districts (boroughs). The two social
districts Vesterbro and Kongens Enghave are neighbouring and were the
catchment areas for the project, with a population of about 50 000.
Mental health services in the local area
The mental health services in Vesterbro and Kongens Enghave are provided by
Hvidovre Hospital. The psychiatric department of this hospital has an
emergency unit with four beds and 130 in-patient beds distributed across three
locked wards, three open wards, one ward for young people with first-episode
psychosis, one ward open Monday to Friday (each with 15 beds) and an old age
psychiatry ward with 10 beds. They provide an extensive liaison psychiatric
service to the general hospital. Further, Hvidovre Hospital has three
Community Mental Health Centres (CMHC): Vesterbro, Valby and Vanløse,
Vesterbro Community Mental Health Centre provides services for inhabitants in
the catchment areas Vesterbro and Kongens Enghave (pop. about 50 000) with
chronic mental illness, mostly schizophrenia. Hvidovre Hospital's total
catchment area is 130 000. The CMHC has a multi-disciplinary team:
psychiatrist, psychologist, social workers, nurses, occupational therapist and
physiotherapist. The total number of staff is 22. Every patient has a case
manager and a psychiatrist in the CMHC. At any one time, approximately 300
patients are on the CMHC case-load. The CMHC provides out-patient care,
structured day activities (mostly workshops as social training: arts,
cooking, gymnastics and psycho-education) and home visits to patients. The
CMCH and the psychiatric department at the general hospital collaborate in
setting up different types of conferences, educational programmes etc. There
is close collaboration between the CMHC and other services in the catchment
area, such as general practioners, social services, sheltered accommodation,
voluntary organisations, etc. (Kastrup,
1998; Becker et al,
1999).
London (Croydon)
General area characteristics
Croydon is predominantly a suburban borough (local government area in
England) in south London, with a total population of 330 000. The population
ranges from the somewhat deprived inhabitants of the north of the borough to a
more affluent, middle-class and semirural southern area. Patients in this
study were recruited from a population of about 80 000 in the borough.
Mental health services in the local area
Specialist mental health services in Croydon are purchased by Croydon
Health Authority and provided by the Bethlem & Maudsley NHS Trust. These
specialist mental health services for the general adult population include 70
acute adult psychiatric beds for the 330 000 population; 10 low-security
in-patient places in a locked ward; and four medium-security forensic beds.
Residential provision includes 25 places staffed around the clock by nurses,
166 places not nurse staffed around the clock and 22 less well supported
places. For the provision of community mental health services, the borough is
divided into three localities, each serving a population of about 100 000.
Sampling in this study was from the Central, East and West localities, with a
population of about 67 000. Each of these three localities contains two or
three general adult community mental health teams, which typically include
community psychiatric nurses, an attached social worker, attached occupational
therapist, consultant psychiatrist and junior psychiatrist. There are four
CMHC for the whole borough of Croydon. These function as community
multi-disciplinary team bases, settings for out-patient and depot medication
clinics, and as day centres, providing occupational therapy and
psychotherapeutic groups. The Social Services and the private and voluntary
sectors also provide day care places, work opportunities and ‘drop-in’
services (Johnson et al,
1997; Thornicroft &
Goldberg, 1998; Becker et
al, 1999).
Santander
General area characteristics
The study was conducted in Cantabria, an Autonomic Community with a
population of about 560 000 in northern Spain. Patients were recruited from
Cantabria as a whole. The city of Santander, a university town with a total
population of about 194 000 inhabitants, is predominantly middle-class, with
the majority of those employed working in services and light industry.
Mental health services in the local area
The Spanish Psychiatric Reform, which was formally initiated in 1985, had
as its main objective the replacement of the old mental hospitals with
alternative services in the community and in-patient psychiatric units in
general hospitals
(Vázquez-Barquero
& García, 1999). These
services are integrated in the Spanish National Institute of Health (INSALUD),
providing free health care for the whole of the Spanish population. In this
context, psychiatric services in Santander are mainly provided as follows
:
Verona
General area characteristics
Data were collected in the South Verona community-based mental health
service (CMHS). South Verona is a predominantly urban area with a population
of about 70 000, on the southern outskirts of Verona, a city in Northern
Italy. Verona is predominantly middle-class, with services and industry
comprising more than 90% of the economic sector.
Mental health services in the local area
The South Verona CMHS has developed gradually over the past 20 years, and
it is the main psychiatric service providing care to South Verona residents
(Tansella et al,
1998). It includes a comprehensive and well-integrated number of
programmes, and provides in-patient care, day care, rehabilitation,
out-patient care and home visits, as well as a 24-hour emergency service and
residential facilities (three apartments and one hostel) for long-term
patients. CMHS staff members are divided into three multi-disciplinary teams,
each referring to a subsector of the catchment area. With the exception of
hospital nurses, all staff (psychiatrists, psychologists, social workers,
community nurses) work both inside and outside hospital. The ‘single staff’
module ensures continuity of care through the different phases of treatment
and the different components of the service. A Psychiatric Case Register
(PCR), which covers the same geographical area, has been operating since 31
December 1978. Private hospitals and other agencies in the larger province of
Verona also provide information to the PCR. However, 1989-1998 data indicate
that 88.8% of patients living in the area are receiving care from the South
Verona CMHS, either solely (83.2%) or together with other services, including
the specialist service for drug addicts (5.6%). On the other hand, only 11.2%
of patients receive care from other services only (including the specialist
service for drug addicts). The vast majority of patients with a diagnosis of
schizophrenia are on the case-loads of public mental health services. It can
be assumed that the sample assessed in this study is representative of all
patients with a diagnosis of schizophrenia under ‘active treatment’ in the
South Verona catchment area (Tansella
et al, 1998; Becker
et al, 1999).
Case ascertainment
In this study, adults aged 18-65 inclusive with any ICD-10 diagnosis from
F20 to F25 were included at the screening stage. These administrative
prevalence samples of patients with psychotic disorders were identified either
from psychiatric case registers (in Copenhagen and Verona) or from the
case-loads of local specialist mental health services (in-patient, out-patient
and community). Patients needed to have been in contact with mental health
services during the 3-month period preceding the start of the study. Thus, an
administrative prevalence sample of people with schizophrenia in contact with
mental health services was used in each site as the sampling frame. Cases
identified were diagnosed using the item group checklist (IGC) of the Schedule
for Clinical Assessment in Neuropsychiatry (SCAN)
(World Health Organization,
1992). On this basis, only patients with an ICD-10 F20 research
diagnosis were included in the study.
Exclusion criteria included current residence in prison, secure residential services or hostels for long-term patients; co-existing learning disability (mental retardation), primary dementia or other severe organic disorder; and extended in-patient treatment episodes longer than one year. This was done in order to avoid any bias between sites due to variation in the population of patients in long-term institutional care, and to concentrate on those in current ‘active’ care by specialist mental health teams. The numbers of patients finally included in the study varied from 52 to 107 between the five sites, with a total of 404.
Patient sample
The distribution of diagnoses on the basis of the item group checklist
(Table 2) shows that between
45% (in Verona) and 86% (in London) of the patients screened had an item group
checklist diagnosis of schizophrenia. Schizotypal disorders were most likely
to be diagnosed in Copenhagen (13%), persistent delusional disorders and acute
transient psychotic disorders were more likely to be diagnosed in Santander
and Verona.
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Table 3 shows the attrition of the samples and reasons why interviews could not be completed. Some differences require comment. The order of events was: (a) collection of administrative data, including all prevalent cases in contact with catchment area services; (b) random selection of patients who were diagnosed and/or interviewed (not in London and Verona, where all were eligible, in order to achieve a big enough sample); (c) diagnostic assessment on the basis of the IGC SCAN (World Health Organization, 1992); and (d) the study interview. In the Santander site, the patients were from the whole of Cantabria, which led to a larger sample (n=423) than in the other sites, with a smaller proportion (n=125) selected for IGC rating/interview. In Copenhagen, the matching of prevalent cases and those interviewed was not possible, due to patient confidentiality regulations in the Danish legal and data protection systems. In Amsterdam, London and Verona all (or most) patients were contacted for interview, because large numbers of refusers and patients who could not be found, as well as substantial diagnostic heterogeneity, were expected. The proportion of patients excluded on the basis of the IGC diagnosis varied from none (Santander) to high rates of 18% and 22% (Amsterdam, Verona). This may reflect differences either in clinical diagnostic routine or in the case-load composition of the secondary mental health services in the various sites. Patients not located varied from 1% (Santander, Verona) to 16% (London), which may reflect more social integration in the former, and more deprivation and loss of social networks in the latter. The rate of interview refusals varied from 3% (Santander) to 32% (London). Again, Santander and Verona had low rates and contrasted with London, and this might reflect social context and degree of deprivation/integration. Between 21% (Amsterdam) and 57% (Verona) completed the interview at time 1, and this may reflect differences between recently established (Amsterdam) and long-standing (Verona) community mental health services. Table 4 shows comparisons between patients interviewed and those not interviewed; there were no significant differences.
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CONTENTS AND OUTLOOK |
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TOPABSTRACTINTRODUCTIONAIMSSTUDY INSTRUMENTSSTUDY SITESCONTENTS AND OUTLOOKACKNOWLEDGMENTSREFERENCES |
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The set of instruments presented in this supplement will be made available to the wider audience of researchers and service managers involved in mental health services research and planning in the five countries.
For the EU instrument versions produced in this study to have an impact on research and practice in mental health care it is necessary to disseminate them properly. Ultimately, the applicability and easy use of the instruments in settings across Europe will decide whether they can make a lasting contribution to the field of mental health services research.
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ACKNOWLEDGMENTS |
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TOPABSTRACTINTRODUCTIONAIMSSTUDY INSTRUMENTSSTUDY SITESCONTENTS AND OUTLOOKACKNOWLEDGMENTSREFERENCES |
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This study was supported by the European Commission BIOMED-2 Programme (Contract BMH4-CT95-1151). Thanks are due to Dr J. Oliver for his permission to include the LQoLP in the EPSILON Study and for his helpful comments and assistance in its administration and scoring. We would also like to acknowledge the sustained and valuable assistance of the users, carers and the clinical staff of the services in the five study sites. In Amsterdam, the EPSILON Study was partly supported by a grant from the National Fonds Geestelijke Volksgezondheid and a grant from the Netherlands Organization for Scientific Research (940-32-007). In Santander, the EPSILON Study was partially supported by the Spanish Institute of Health (FIS) (FIS Exp. No. 97/1240). In Verona, additional funding for studying patterns of care and costs of a cohort of patients with schizophrenia were provided by the Regione del Veneto, Giunta Regionale, Ricerca Sanitaria Finalizzata, Venezia, Italia (Grant No. 823/01/06 to Professor M. Tansella). THOMAS BECKER, MD, Department of Psychiatry, University of Leipzig, Germany; GRAHAM THORNICROFT, MRCPsych, Section of Community Psychiatry (PRiSM), MARTIN KNAPP, PhD, Centre for the Economics of Mental Health, Institute of Psychiatry, King's College, London, UK; HELLE CHARLOTTE KNUDSEN, MD, Institute of Preventive Medicine, Copenhagen University Hospital, Denmark; AART SCHENE, MD, Department of Psychiatry, Academic Medical Centre, Amsterdam, The Netherlands; MICHELE TANSELLA, MD, Department of Medicine and Public Health, University of Verona, Italy; JOSÉ LUIS VÁZQUEZ-BARQUERO, FRCPsych, Clinical and Social Psychiatry Research Unit, University of Cantabria, Santander, Spain
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REFERENCES |
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TOPABSTRACTINTRODUCTIONAIMSSTUDY INSTRUMENTSSTUDY SITESCONTENTS AND OUTLOOKACKNOWLEDGMENTSREFERENCES |
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Becker, T., Knapp, M., Knudsen, H. C., et al
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