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SUPPLEMENT |
Centre for the Economics of Mental Health, Institute of Psychiatry, King's College, London
Institute of Preventive Medicine, Copenhagen University Hospital, Denmark
Department of Psychiatry, University of Verona, Italy
Clinical and Social Psychiatry Research Unit, University of Cantabria, Santander, Spain
Department of Psychiatry, Academic Medical Centre, Amsterdam, The Netherlands
Correspondence: Daniel Chisholm, Centre for the Economics of Mental Health, Institute of Psychiatry, King's College London, 7 Windsor Walk, London SE5 8BB
Declaration of interest No conflict of interest. Funding detailed in Acknowledgements.
1 In fact, the input from family caregivers was assessed in
another instrument used in this study, the Involvement Evaluation
Questionnaire (IEQ) (van Wijngaarden
et al, 2000, this supplement). 
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
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Aims To develop a research method and instrument for the collection of data on the service utilisation and related characteristics of people with mental disorders, as the basis for calculating the costs of care.
Method Various approaches to the collection of service use data and key stages of instrument development were identified in order to select the most appropriate methods.
Results Based on previous work, and following translation and cross-cultural validation, an instrument was developed: the Client Socio-Demographic and Service Receipt Inventory - European Version (CSSRI-EU). This was subsequently administered to 404 people with schizophrenia across five countries.
Conclusion The CSSRI-EU provides a standardised yet adaptable method for collating service receipt and associated data alongside assessment of patient outcomes.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
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Yet standardised methods or instruments for international research have not been developed for these tasks. Methods for the measurement of service use and costs need to be more sensitive to the local context than do the rating of psychiatric symptoms or the assessment of behavioural traits and personal abilities. For example, the approach to measurement must take into account the structure or system of treatment and care, and factors relating to patients' access to specific services. The broader socio-economic and cultural contexts will also be relevant, for they will influence, inter alia, the prevailing level of unemployment, and the expectations regarding roles of families and wider local communities in supporting people with mental health problems (Johnson et al, 1997).
The aim of the work described in this paper was to develop an internationally usable method for gathering data on service utilisation and other domains relevant to the economic analysis of mental health care. Specifically, the work represented a core element of a five-country EPSILON (European Psychiatric Services: Inputs Linked to Outcome Domains and Needs) Study, the primary aims of which were to produce standardised versions of instruments in key areas of mental health services research in five European languages, test their reliability, and employ them in a five-country, cross-sectional study of people with schizophrenia (Becker et al, 1999). The five research sites were Amsterdam (The Netherlands), Copenhagen (Denmark), London (England), Santander (Spain) and Verona (Italy).
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METHOD |
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
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International research on service utilisation patterns, costs and other economic dimensions of mental health care is complicated by the need to reflect the contexts within which people live and receive their care. Arguably this is true of any research tool, but the problems of economic research which crosses international boundaries are especially acute when the objects of comparison are themselves heavily influenced by social, economic, political, historical and cultural structures and forces peculiar to those contries. To a greater degree than for the other instruments developed or tested in this study, therefore, we needed to ensure that the instruments assessing resource use captured the core features of each of five health care and other systems covered by the study, as well as being sufficiently standardised to permit meaningful international comparison. A core feature was thus to balance local relevance with international generalisability.
Sources of resource utilisation and socio-economic data
Selecting the most appropriate method of data capture for economic studies
depends on a number of factors, including the primary purpose of the study,
the availability of funding and the data collection methods to be used for
other evaluative information in the broader study. In this paper we do not
discuss what methods to employ in each possible circumstance or in response to
each type of eventuality (for helpful discussion of these issues, see
Drummond et al, 1997;
Hargreaves et al, 1998
; Johnston et al,
1998). Instead we focus on the type of study within which we would
be examining service use and associated patterns. The main features of that
type of study are in fact quite common in mental health services research
:
The two broad options for data collection that presented themselves were to use existing information held by service-providing or funding agencies, or to rely on individual informants. One of the study sites (Verona) has a psychiatric case register which contains health service utilisation data, and other sites had some electronic data (for example, secondary health care information systems in London and Copenhagen). However, none of the local ‘routine information’ systems was sufficiently compatible with the others to provide the basis for comparative research. Even if there had been some compatibility, there would be the question of data breadth: do extant systems keep data on all relevant services ? We know from previous research that schizophrenia sufferers use many different services (Knapp et al, 1999); so even if each site had computerised data, would these cover all relevant services ? In the (unlikely) event that they did, there would then be the considerable challenge of merging data-sets designed for different health care systems, to meet different local management needs, and using different software. Data capture via electronic information systems was therefore rejected at an early stage. Information on services used by individual people will usually be held by service providers, and some professionals (such as general practitioners) should have a reasonably broad view of service utilisation. The disadvantage of relying on service providers to produce these data is that records or professionals' knowledge will often be incomplete, partial (generally covering only the agency's own responsibilities) and difficult to access or expensive in researcher time. These latter factors were important in the present study, and we concluded that we could not rely on agency information holdings in the five sites to provide the range and quality of data needed.
Another way of collecting these data is to ask individuals, either through interview or a self-completion questionnaire. Postal or self-completion methods (including diary cards) have been used in some previous studies (Mauskopf et al, 1996 ; Gosden et al, 1997) but were ruled out here, partly because we feared a low response rate, but mainly for the pragmatic reason that other study objectives already required face-to-face interviews, and there is a long track record of collecting service utilisation and associated data alongside clinical data (Beecham, 1995).
Three potential groups of respondents could be interviewed: case managers (keyworkers or similar), family members, or patients themselves. If there is a case (or care) manager or keyworker to coordinate services for the patient, they might be a good respondent, although this would depend on the breadth of their responsibilities and knowledge (Widlak et al, 1992). Case management has been implemented in some guise in all the study sites, but because the particular modes of operation and service structures differ in these different sites, standardised reporting of service uptake by case managers would be problematic. Where a patient lives with their family, another data source could be other family members (who may act as informal case managers, of course). In some sites it transpired that a majority of the sample lived with at least one relative (72% in Santander, 50% in Verona), but elsewhere this was much less common (20% in Amsterdam and London, and only 4% in Copenhagen). Family members were interviewed for another part of the research study (to complete the Involvement Evaluation Questionnaire (IEQ); van Wijngaarden et al, 2000, this supplement), but it was felt that this data source was not sufficiently widely available for the purposes of the description of service use and cost calculations.
The patient is the only person who should have all or most of the information on which particular services have been accessed, how often and for how long. A potential concern, however, is that the patient may not report service utilisation accurately, either because of their clinical condition, or because they exhibit the common human failing of poor recall. We did in fact choose to ask patients for these data, but we needed to take especial care with instrument design to improve the likely accuracy of the information provided (for example, by providing clearly defined and identifiable categories of service or state benefits).
The comparative merits of retrospective and prospective data collection have been discussed elsewhere (Johnston et al, 1998). Prospective data collection essentially requires maintaining a diary of all service contacts, whereas retrospective collection involves occasional completion of an interview, reflecting back on services used in the previous few weeks or months. (Data collection should not be confused with design: prospective trials can of course use retrospective methods for collecting service use data.) In this study, we adopted a 3-month retrospective period, which is sufficiently long to pick up the wide range of services that individuals might take up but without stretching the respondent's powers of recall (there is evidence to suggest that interviewees significantly under-report frequent events when asked to report retrospectively over a 6-month period; Jobe et al, 1990).
Instrument development
It is possible to distinguish a number of stages in the development of an
instrument for collecting service use and related
(Table 1). The first task was
to identify criteria for selection or development of an instrument. Four
requirements were identified :
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The second stage was to establish whether there existed an instrument that would meet these requirements. If so, we could move on to its employment in the empirical part of the study, examining its performance in use with samples of people with schizophrenia. If no existing instrument satisfied our requirements, as was the case here, the next task was to develop or adapt one. Rather than start from very first principles, we chose to build on an existing instrument, the Client Service Receipt Inventory (CSRI). The CSRI has been widely employed and has a multitude of forms, having been used in over 100 studies since it was first developed in England in the mid-1980s (Beecham & Knapp, 1992, introduce this instrument in the context of a wider discussion of cost research methods in mental health). Although it has been used outside the UK, the CSRI has not previously been subjected to the degree of developmental work or scrutiny that we employed in this study. In particular, close attention was paid to the categorisation of housing, employment and service use items of the inventory in order to generate an instrument capable of international use (see below).
A set of baseline questions was generated which covered the topics of interest (initially in English, subsequently translated into the other four languages). This baseline schedule was then subjected to a process of cross-cultural validation and refinement, based on the discussions in focus groups at each site. The final stage in the development of this resource utilisation measure was to administer it to a sample of individuals at each site, and further revise the instrument in the light of any difficulties or misinterpretation.
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RESULTS |
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
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Socio-demographic information
A range of categorised socio-demographic variables, including date of
birth, gender, marital status, ethnic group, mother tongue, years of schooling
and level of educational attainment comprised the initial section of the
instrument. Although some of these variable (such as age or gender) appear in
other instruments, these data were comprehensively recorded here for
completeness. Moreover, such data lead naturally on to consideration of other
socio-economic circumstances.
Usual living situation
Accommodation represents an important parameter for economic studies of
mental disorder, largely because of the high cost of specialist residential
care. An individual's living situation (alone, in a family or living with
other, non-related residents) is also a potentially significant predictor of
cost (and outcomes). Accommodation was divided into domestic, hospital and
community residential categories, each with clearly defined sub-categories
(for example, tenure of domestic accommodation or staffing cover/intensity in
residential care). Changes in accommodation over the retrospective period can
be recorded.
For all subjects resident in non-domestic accommodation, completion of a one-page supplement was requested, containing information on the number of (available and occupied) places/beds in the facility, the total complement and cost of care staff, other revenue costs and the average weekly charge or fee per resident place/bed. This supplement, based on a schedule developed for costing mental health residential care in the UK (Chisholm et al, 1997), was an addition to the original CSRI and was completed after the face-to-face interview, in consultation with a facility manager.
Employment and income
This section aimed to elicit information on patients' employment and income
circumstances. It is an important source of information for establishing the
indirect costs and effects of schizophrenia, such as lost days of work, and
also for estimating the living expenses of the patient. Employment status was
divided into a number of appropriate categories (paid or self-employed,
unemployed, housewife, house-husband, etc.), while occupational categories
were based on an international standard classification of occupations
(manager/administrator, professional, skilled labourer, etc.). The approach
taken regarding state benefits was to identify a number of international
categories of benefits or entitlements (unemployment and income support;
sickness and disability; housing; other), and to have a list of national
variants that fell under these broad categories (for example,
‘job-seekers'
allowance’ in the UK). This enabled us both to make consistent comparisons
between study sites and to build up a set of data that has most meaning and
use within each individual site. Personal (gross) income was also requested,
using bands obtained from national statistics bureaux that reflected the
quintiles of gross income in each country (so that the proportions of patients
falling into these internationally equivalent income bands could be
compared).
Service receipt
A range of psychiatric, social and general medical services were identified
which together were considered to make up a comprehensive profile of services
available to the patient population in each of the five centres. The main
categories were: psychiatric and general medical in-patient hospital
admissions and total days; psychiatric and general medical hospital
out-patient attendances; community-based day services (frequency and
intensity of attendance); and contacts with primary care, social services and
community mental health care professionals. Clear definitions were attached to
individual service components or categories, in order to be able to compare
the different sites, and space was left for inclusion of other services
provided to patients that were not specifically identified in the inventory.
For each service, the numbers of contacts in the previous 3 months were
requested, and, where applicable, the sector of provision
(statutory/government, voluntary or private). A final subsection asked for
contact with criminal justice services (number of police contacts, nights in
custody, psychiatric assessments or court appearances).
Medication profile
A profile of the individual's use of all prescribed medications in the
previous month was requested, incorporating the name of the drug, the dosage
level and frequency, and whether it was prescribed on a depot basis.
Translations and focus groups
Once the baseline version of the instrument had been developed, the next
steps were translation into the other four European languages (Danish, Dutch,
Italian, Spanish), by either professional translators or local researchers,
followed by cross-cultural validation of the translated instrument. Since the
CSSRI-EU is an inventory of socio-economic indicators and service variables
rather than a multi-item rating scale of a particular outcome domain, the
focus in this study has been on achieving face validity and semantic
equivalence within and between individual participating sites, rather than
formal exploration of the reliability of the measure between raters, sites or
time points (Schene et al,
2000, this supplement). This took place through both informal
dialogue and discussion with principal investigators and other interested
parties, and more formally through the conduct of focus groups. Focus groups
consisted of between six and ten individuals (psychiatrists, other health
professionals, social care workers, informal carers and service users), and
were intended to address two aspects of the instrument: its content and its
language (Knudsen et al,
2000, this supplement).
The CSSRI-EU focus groups generated a number of system-level comments that revolved around the perceived incompatibility of national health, social and welfare structures with the attempted European-wide structures or categories given in the initial version of the CSSRI-RU. These comments related to two sections of the instrument: usual living situation, and employment and income. In particular, focus groups suggested reordering the categories of employment, benefit entitlements and accommodation so as to reflect their own national systems better. These suggestions were incorporated as far as possible, without losing the core requirement of inter-site comparability. For example, four international categories of state benefits were developed (unemployment/income support; sickness/disability; housing; pension), within which sites could specify local variants of these broader categories. Residential care was a further area that required reordering, owing to the heterogeneity of service arrangements in different sites. This problem was overcome by describing the final categories in neutral, broad terms (overnight facility, 24-hour staffed; overnight facility, staffed (not 24 hours); overnight facility, unstaffed).
A second set of comments revolved around country-specific suggestions for enhancing the understanding, definition or measurement of individual items or components included in the service receipt section of the inventory. A particular area of discussion concerned the appropriate classification and definition of day care and support facilities and community-based mental health services. For example, the Dutch system of community mental health centres needed to be correctly classified under the appropriate item in the inventory.
The instrument was then revised, both in its original English form (in the light of focus group recommendations as to content) and in each of four translations (in the light of recommendations about terminology or language).
Exploratory use of the instrument
The tool was now ready for use in empirical research. In this study the
sample was selected in each of the five sites by employing the same diagnostic
and administrative criteria (adults aged 18-65 inclusive with an ICD-10
diagnosis of schizophrenia: code F20). All patients had been in contact with
mental health services during the 3-month period preceding the start of the
study (Becker et al,
1999). Fieldwork was conducted over 15 months in the five sites.
The main findings regarding service utilisation and costs for this sample are
to be reported elsewhere, but a number of methodological issues which emerged
in the course of data collection and in the following initial examination of
the final dataset can be summarised here.
First, the response rate in terms of completion of the CSSRI-EU was 100%; no refusals to be interviewed were encountered across the sites. This unusually high response rate may be attributable in part to the integration of service utilisation questions with key socio-demographic characteristics (the latter being of fundamental importance to analyses, over and above economic evaluation). Response rates to individual items within the CSSRI-EU were also high (where applicable), indicating few difficulties of interpretation. For items or services not available in, or applicable to, a site (for example, long-stay psychiatric wards in certain sites), zero was entered for all cases.
Structured response categories for a range of socio-demographic and socio-economic indicators (such as living situation, level of educational attainment and state benefit entitlements) performed well. The only clear source of inter-site differences in interpretation related to employment status: specifically, the classification of patients not in open or sheltered employment; in certain sites, such patients were categorised as ‘unemployed’, whereas in other sites a large proportion were classified as ‘retired’, in the sense that they were in receipt of a disability allowance or pension and were not expected or likely to be employed in the future.
As expected, and allowed for in the baseline version of the instrument, a number of specific services had been used over and above those specified. These service contacts were recorded as an ‘other service’ under the appropriate service category, together with a brief text description of the service, and subsequently recoded or described in their own right. For one site (Verona), where the same professionals provide both hospital and community care (continuity of care model), there was evidence of ‘double counting’ of service provision, which subsequently required checking of CSSRI-EU data with that centre's psychiatric case register. A final area of difficulty experienced in the service receipt section of the instrument was coding of the dosage frequency for prescribed medications, because sites adopted different approaches for recording frequency rates for depot v. other drugs.
On the basis of these analyses, a final set of revisions was made to the instrument (and accompanying manual) in order for it to be usable in other research studies. For example, specific services included under ‘other’ for a particular service category were incorporated as necessary, and guidance was modified for coding employment status and frequency of medication use.
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DISCUSSION |
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
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Since the CSSRI-EU is an inventory of variables required for economic analysis, rather than a multi-item rating scale, the focus in this study has been on achieving face validity within and between individual participating sites, rather than formal exploration of the reliability of the measure between raters, sites or time points. The absence of such reliability measures represents a gap in our understanding of how accurate the CSSRI-EU is in recording rates of service utilisation. While significant but relatively uncommon events such as hospitalisation are readily recalled, there is concern that reporting of the frequency and intensity of contact with community-based service professionals by patients is subject to recall error (Jobe et al, 1990; Clark et al, 1994; Johnston et al, 1998).
This possible source of error can be examined by comparing the values given by patients in the CSSRI-EU with an alternative data source, either another informant (an informal carer or keyworker) or an administrative database. We have already commented on the limitations of these alternative sources of data in an international context, specifically the incomplete knowledge of other informants and the absence of standardised, high-quality information systems across countries. Where they exist, however, well-maintained psychiatric case registers do represent one important data source against which to assess the performance of certain elements of service receipt schedules such as the CSSRI-EU. Such an analysis was not an objective of this study, but recent work in one of the sites (Verona) has considered these issues and showed that the agreement on overall psychiatric costs was high: the concordance correlation coefficient was 0.93 for all patients and 0.97 for patients with a diagnosis of schizophrenia (Mirandola et al, 1999).
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ACKNOWLEDGMENTS |
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TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
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The study was supported by the European Commission BIOMED-2 Programme (Contract BMH4-CT95-1151). 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 Nationaal Fonds Geestelijke Volksgezondheid and a grant from the Netherlands Organization for Scientific Research (940-32-007). In Santander the EPSILON Project 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. 723/01/96 to Professor M. Tansella).
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