Implementing the Treatment Demand Indicator in Belgium:

Transcriptie

1 FEDERAL PUBLIC SERVICE HEALTH, FOOD CHAIN SECURITY AND ENVIRONMENT Scientific Institute of Public Health Unit of Epidemiology Drugs Programme Implementing the Treatment Demand Indicator in Belgium: Registration of drug users in treatment COLPAERT Kathy DE CLERCQ Tinneke IPH/EPI REPORTS Nr

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3 Epidemiology Unit, Scientific Institute of Public Health, November 2003; Brussels (Belgium) IPH/EPI REPORTS Nr Deposit number: D/2003/2505/38 Implementing the Treatment Demand Indicator in Belgium: Registration of drug users in treatment COLPAERT Kathy DE CLERCQ Tinneke Scientific Institute of Public Health Unit of Epidemiology Drugs Programme Rue J. Wytsmanstraat 14 B-1050 BRUSSELS Tel Fax

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5 Contents CONTENTS LIST OF ABBREVIATIONS 3 LIST OF TABLES AND FIGURES 4 INTRODUCTION 5 CHAPTER 1: Assessing drug problems 9 CHAPTER 2: Reporting systems 13 CHAPTER 3: Advantages and limitations of treatment reporting systems 17 CHAPTER 4: The PG/EMCDDA Treatment Demand Indicator Protocol 19 CHAPTER 5: Substance abuse treatment in Belgium 23 CHAPTER 6: Treatment reporting systems in Belgium Primary treatment reporting systems Primary treatment reporting system - ASL Sentinelle Charleroi Addibru Primary Treatment Reporting System - De Sleutel Primary Treatment Reporting System - Eurotox Minimal Psychiatric Data (MPD) Primary Treatment Reporting System - Institut Wallon pour la Santé Mentale (IWSM) MEDAR ARCADE Minimal Psychiatric Data extra module Primary Treatment Reporting System - VLAams STRaathoekwerkOVerleg (VLASTROV) Drug Aid RegisTration System (DARTS) 43 1

6 Contents 6.2 Umbrella treatment reporting systems Umbrella treatment reporting system Eurotox Vlaamse Registratie Middelenmisbruik (VRM) 47 CHAPTER 7: Congruence of the reporting systems to the TDI Protocol National figures Types of Treatment Centres External coverage Selection of cases Internal coverage Unique clients Continuity Variables Treatment contact details Socio-demographic information Drug-related information Conclusion 94 CONCLUSIONS 97 RECOMMENDATIONS 101 BIBLIOGRAPHY 103 ANNEX 109 2

7 List of abbreviations LIST OF ABBREVIATIONS ARCADE: Applicatie voor de Registratie van Cliëntengegevens voor de Administratie Gezondheidszorg en voor Data-Export ASL : Arbeitsgemeinschaft für Suchtvorbeugung und Lebensbewältigung CCAD: Comité de Concertation sur l Alcool et les autres Drogues CDC: Coordination Drogue Charleroi CGG: Centrum Geestelijke Gezondheidszorg CRC : Cellule Recherche et Concertation CRSSM : Conseil Régional des Services de Santé Mentale CTB : Concertation Toxicomanies Bruxelles DARTS: Drug Aid RegisTration System DGASS : Direction Générale de l Action Sociale et de la Santé DSM: Diagnostic and Statistical Manual EMCDDA: European Monitoring Centre on Drugs and Drug Addiction EuropASI: European Addiction Severity Index FDGG : Federatie van Diensten voor Geestelijke Gezondheidszorg HP : Hôpital psychiatrique ICD : International Classification of Diseases INAMI : Institut National d Assurance Maladie Invalidité IWSM : Institut Wallon pour la Santé Mentale LWSM : Ligue Wallonne pour la Santé Mentale MedAr: Medical Archives MPD: Minimal Psychiatric Data MPG : Minimale Psychiatrische Gegevens ODB : Overleg Druggebruik Brussel PAAZ : Psychiatrische Afdeling van een Algemeen Ziekenhuis PG : Pompidou Group PZ : Psychiatrisch ziekenhuis RIZIV : Rijksdienst voor Invaliditeit en Ziekteverzekering RPM : Résumé Psychiatrique Minimum SSM: Service de Santé Mentale TDI: Treatment Demand Indicator VAD : Vereniging voor Alcohol en andere Drugproblemen VLASTROV : VLAams STRaathoekwerkOVerleg VLIS-DC : Vlaams Informatie Systeem Drugvrije centra VMSI: Verbond der Medisch-Sociale Instellingen VRM : Vlaams Registratiesysteem Middelenmisbruik VVBV : Vlaamse Vereniging van Behandelingscentra in de Verslavingszorg VVGG : Vlaamse Vereniging voor Geestelijke Gezondheid VVI : Verbond der Verzorgingsinstellingen 3

8 List of tables and figures LIST OF TABLES AND FIGURES TABLE 1: Key questions to which epidemiological studies can help find answers TABLE 2: List of twenty core variables in the Joint Pompidou Group EMCDDA Treatment Demand Indicator Protocol version TABLE 3: Overview of the primary reporting systems 28 TABLE 4: Main characteristics of the clients registered in 2001 through the ASL reporting system TABLE 5: Main characteristics of the clients registered in 2001 through the Sentinelle reporting system TABLE 6: Main characteristics of the clients registered in 1999 through the Addibru reporting system TABLE 7: Main characteristics of the clients registered in 2002 through the De Sleutel reporting system TABLE 8: Main characteristics of the clients registered in 2000 through the MEDAR reporting system TABLE 9: Main characteristics of the clients registered in 1999 through the MPD extra module reporting system TABLE 10: Main characteristics of the clients registered in 2001 through the DARTS reporting system TABLE 11: Main characteristics of the clients registered in 2000 through the CCAD and Sentinelle reporting systems TABLE 12: Main characteristics of the clients registered in 1999 through the VRM TABLE 13: Types of existing treatment centres in Belgium in combination with the existing treatment reporting systems FIGURE 1: Conceptual framework for different methods to investigate the nature and extent of drug use and drug problems

9 Introduction INTRODUCTION Although the European Monitoring Centre on Drugs and Drug Addiction (EMCDDA) states in its most recent annual report (EMCDDA, 2002) that the increasing trend regarding problems related to drug use has come to a relatively stable standstill, this does not mean that the problem is solved and no longer requires our attention. Drugs and drug addiction still remain important issues on the political agenda. In Belgium, the recent evolutions regarding legislation, policy statements and initiatives clearly illustrate this observation (Sleiman & Sartor, 2002). In order to be able to organise drug prevention, drug treatment and drug control in an efficient and effective manner, reliable epidemiological information is required about the extent and the specific characteristics of (problematic) drug use in a certain population. Due to the specific nature of drug (ab)use, obtaining this kind of information is not evident and accordingly, adequate methods have to be applied that aim to increase knowledge, sometimes in an indirect manner. The registration of drug users starting treatment can be considered one of those methods. On the European level, the Treatment Demand Indicator (TDI) Protocol (version 2.0) was developed in 2000 in the framework of the EMCDDA. This Protocol provides guidelines to the different member states regarding the registration of drug users in treatment in order to establish and improve the possibility to compare the situation between countries. After all, since the Maastricht treaty in 1993, drug-related matters belong partially to the competences of the European Union and have acquired a prominent place on the European political agenda (Boekhout van Solinge, 2002). The objective of the present report is to provide an overview of the different treatment reporting systems in Belgium and their characteristics. Furthermore the Belgian situation related to drug treatment registration is compared to the guidelines in the European TDI Protocol. Hence, this document should be considered as a basis for discussion with all partners involved, in order to continue the steps that have already been taken towards the search for valid and reliable national figures. This document does not pretend to be exhaustive; it rather aims to be a starting point for discussion and a working tool. In the first five chapters of the report more background information is provided on the assessment of drug problems and the accompanying difficulties, reporting systems, advantages and difficulties of treatment monitoring systems, the European TDI Protocol and finally substance abuse treatment in Belgium. Chapter 6 describes the different treatment monitoring systems in Belgium and their characteristics. A distinction has been made between a primary treatment monitoring system and an umbrella treatment monitoring system. The former is characterised by the fact that a central body receives information from individual treatment centres, using a systematic reporting procedure. Accordingly it is responsible for the 5

10 Introduction development of registration forms or a computer programme. An umbrella treatment monitoring system on the other hand makes use of existing primary reporting systems to gain insight into the extent and nature of the drug phenomenon on a larger scale. The central body of the umbrella treatment monitoring system receives information of the central body s of the primary treatment reporting systems. In this way, an umbrella reporting system is dependent on other primary treatment reporting systems and therefore has in general less control on data quality. In chapter 7 the Belgian situation regarding drug treatment registration is compared to the guidelines provided in the European TDI Protocol. The following issues will be addressed: national figures, types of treatment centres, external coverage, selection of cases, internal coverage, unique clients, continuity of the registration and the various variables of the TDI Protocol. In this chapter a number of points are listed that call for in-depth discussion. The reader has to be aware that the situation described in this last chapter has been evaluated as it is today. Treatment reporting systems are all subject to changes over time: changes in the number or nature of the variables, the number of treatment centres or with regard to the registration guidelines. This implies that congruence to the TDI Protocol also varies over time, although one should expect congruence improval through the years since most of the reporting systems have already made, and are still making, efforts to adjust their system to the needs of the Protocol. In annex the registration forms have been included of all primary treatment reporting systems described in chapter 6. Before proceeding to the first chapter of this report a number of comments have to be made regarding the focus of this report and the terminology that was used. As described above, the subject of this report is the registration of people with drug problems starting treatment. However, in some of the consulted literature the terminology that is being used is treatment demand registration. Also the European Protocol itself is called the Treatment Demand Indicator Protocol. Nevertheless, in this report the choice has been made to speak of treatment registration because of the fact that in reality no persons are registered who do not start treatment. Furthermore, also during the European expert meetings on TDI at the EMCDDA headquarters in Lisbon, experts agreed that the term treatment demand does no longer cover what is really registered in practice. The TDI Protocol has been drawn up within the framework of the EMCDDA, an agency that has been established to provide objective, reliable and comparable information at European level concerning drugs and drug addiction and their consequences (EMCDDA, 2002). Its main concern goes out to illegal drugs. The guidelines in the TDI Protocol state that clients with alcohol as a primary drug should not be taken up in this type of registration activities and that only data on clients with illegal drug problems should be submitted to the EMCDDA by the member states. Clients with illegal drug problems are therefore also the main focus of this report. 6

11 Introduction Nevertheless, in reality this rather artificial boundary is not always easy to retain: treatment centres often treat clients with alcohol and illegal drug problems, the coordinating organisations of the reporting systems have missions related to illegal drugs but also to alcohol, etc... Therefore the main focus of this report are persons with illegal drug problems but has been sometimes interpreted in a flexible way. In Belgium, substance abuse treatment is characterised by a large diversity of treatment possibilities in different types of treatment facilities. Dependent on the prevailing views and guiding principles, people with drug problems being treated in a treatment centre are nominated differently. In psychiatric hospitals people will rather be regarded as patients while for example in low threshold services the term guests or clients is more common. Also language differences have to be taken into account. In the French-speaking part of Belgium for example, the French equivalent for client has a totally different meaning and will never be used in this context and preference is being given to the term patients. In this report however the choice has been made to systematically use the term clients when talking about persons with drug problems starting treatment, since it is most commonly used as a global term in the English scientific literature too. For the same reason the term treatment has been retained in this report. In some types of treatment facilities, sometimes also related to the different parts of the country, the term treatment is not used due to fundamental objections to the underlying assumptions related to the discussion on the nature of addiction (Schaler, 2000). Preference is being given to other expressions, such as guidance. These arguments are acknowledged by the authors but for an easy reading of the report only the term treatment has been withheld. When the term practitioners is used in the context of the registration activities, all professionals are meant that work directly with clients to deal with drug problems and that are in general also the persons that are responsible for registering the information of clients starting treatment. In this report, the term practitioners is for example used for experts through experience as well as for psychiatrists. The term is mainly used to describe the group of people that is actually taking care of the registration. This report has been drawn up on the basis of existing written documents and has been sent to the persons responsible for the various treatment reporting systems in Belgium for verification and comments, and to a number of other experts active in the field of substance abuse or mental health research: - Virginie Bellefroid: Institut Wallon pour la Santé Mentale (IWSM) ; - Willy Brunson: Belgian representative at the Management Board of the European Monitoring Centre for Drugs and Dug Addiction (EMCDDA); - Joris Casselman: Belgian representative at the Management Board of the European Monitoring Centre for Drugs and Dug Addiction (EMCDDA); - Luc Claeys: Vlaamse Vereniging voor Geestelijke Gezondheid (VVGG); 7

12 Introduction - Philippe Depaepe: Cellule Recherche et Concertation (CRC), Coordination Drogue Charleroi (CDC) ; - Herwin De Kind: Ministry of the Flemish Community; - Ilse De Maeseneire: Vereniging voor Alcohol en andere Drugproblemen (VAD); - Marijs Geirnaert: Vereniging voor Alcohol en andere Drugproblemen (VAD) - Pol Gerits: Federal Public Service Public Health, Security of the Food Chain and Environment ; - Jean-Pierre Gorissen: Federal Public Service Public Health, Security of the Food Chain and Environment; - Fabienne Hariga: Eurotox - Sofie Köttgen: Arbeitsgemeinschaft für Suchtvorbeugung und Lebensbewältigung (ASL) ; - Margarète Molnar: Eurotox; - Veerle Raes: Dienst Wetenschappelijk Onderzoek en Kwaliteitszorg De Sleutel; - Jo Thienpont en Paul Van Deun: Vlaamse Vereniging van Behandelingscentra in de Verslavingszorg (VVBV); - Mark Vanderveken: Concertation Toxicomanies Bruxelles / Overleg Druggebruik Brussel (CTB/ODB); - Wim Verhelst : VLAams STRaathoekwerkOVerleg (VLASTROV); - Geert Verschuren: Rijksdienst voor Invaliditeit en Ziekteverzekering (RIZIV) / Institut National d Assurance Maladie Invalidité (INAMI). Furthermore, a meeting was held on the 29 th September. During this meeting, the findings of the experts present were discussed. 8

13 Chapter 1: Assessing drug problems CHAPTER 1: ASSESSING DRUG PROBLEMS One cannot ignore the fact that drug use and drug abuse have gradually taken their places in our present society. The European Monitoring Centre for Drugs and Drug Addiction (EMCDDA) reports in its latest annual report that the overall trend in the European countries seems to incline towards a stabilisation of the problem. In the 1980s and the first half of the 1990s, extreme increases were still part of the daily reality (EMCDDA, 2002). This does not imply however that the situation is under control. After all, drug (ab)use can bring about serious consequences, not only for the individual but also for his or her environment and the society at large. Therefore adequate responses have to be sought after in order to prevent the situation or get it under control. In order to be able to organise drug prevention, drug treatment and drug control in an efficient and effective manner, reliable epidemiological information is required about the extent and the specific characteristics of (problematic) drug use in a certain population, preferably obtained through a low cost manner (Hartnoll et al., 1998; Saxena & Donoghoe, 2000). Governments or other relevant actors need information on when, where and why people use illicit drugs (UN, 2003) in order to understand the situation, monitor trends, identify priorities and engage in appropriate responses. Therefore, they are particularly interested in the evolution of these patterns over time (Hartnoll et al., 1998). In the WHO publication Guide to Drug Abuse Epidemiology, Saxena and Donoghoe (2000) summed up a number of key questions to which epidemiological studies can help to find answers (Table 1). Table 1: Key questions to which epidemiological studies can help find answers (Saxena & Donoghoe, 2000) 1. What is the extent of drug abusing behaviours? 2. What are the nature and pattern of the drug abusing behaviours? 3. What are the characteristics of persons abusing drugs? 4. How do drug abusing trends look over time and what impact do the characteristics of drug abusers and drug abuse patterns at any point in time have on these trends? 5. What factors are associated with abuse of drugs and influence the onset of drug abusing behaviours and continued abuse of drugs? 6. What protective factors are associated with not using drugs? 7. What are the social, behavioural, biomedical, psychological, psychiatric, and economic impacts of drug abusing behaviours on individuals, families, communities, and society? Unfortunately, due to several reasons, monitoring the situation of drug use is not an easy task since drug use is generally an illegal and socially stigmatised behaviour (Simon et al., 1999; Stimpson & Judd, 1997; Saxena & Donoghoe, 2000). After all, 9

14 Chapter 1: Assessing drug problems drug use tends to be related to other illegal or deviant behaviour (Hartnoll et al., 1998). Prevalence and incidence of drug use are difficult to determine due to the hidden nature of the phenomenon (Wiessing et al., 2001). Furthermore, individuals do not like to report about their drug use and if they do, questions can be raised about the accuracy of their statements (Saxena & Donoghoe, 2000). Also the nature of drug use itself, with rapid variation in the types of drugs being used, has consequences for the ways that are to be followed for assessment and research (UN, 2003). Different information collection methods and indicators have been developed to address the methodological problems that go along with the specific nature of drug use and drug problems. Each of them has its own limitations and reflects only one aspect of drug using behaviour or its consequences (UN, 2003). Various ways exist to classify these different epidemiological methods. In 1980 the WHO distinguished the following methods: collation and analysis of existing data, surveys, intensive casefinding, observations and reporting systems (Rootman & Hughes, 1980). Later on in 2000, Smart and Sloboda (2000) drafted another classification, based on the research question postulated, also in the framework of a WHO publication. The UN on the other hand makes a distinction between active sources, such as population surveys, and passive sources, such as existing reports (UN, 2003). In the WHO publication The assessment of drug problems (Hartnoll et al., 1998), a more extensive overview was given of these different methods, sources of information and indicators (fig. 1). Fig. 1: Conceptual framework for different methods to investigate the nature and extent of drug use and drug problems (Hartnoll et al., 1998). 10

15 Chapter 1: Assessing drug problems The choice between the different data collection methods depends clearly a lot on the type of information that is needed (linked to the (policy) level requiring the data, e.g. international, national or local), the research questions that are postulated and the purposes for which the information obtained will be used, e.g. planning of prevention activities, organisation of the treatment offer, etc. Each of these epidemiological methods also concentrates on a certain segment of the population concerned (Hartnoll et al., 1998). Nevertheless most reports argue for a combination of methods in case one really wants to obtain a comprehensive picture of drug use and drug problems in a community (Saxena & Donoghoe, 2000; UN, 2003). 11

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17 Chapter 2: Reporting systems CHAPTER 2: REPORTING SYSTEMS Reporting systems are among the data collection methods that can be used to obtain information on drug (ab)use in a population. In order to define such a reporting system in the context of substance abuse, Rootman & Hughes (1980, p.9) have set out a few characteristics: - reports are sent to a central body (university, research team, government agency, etc.) for data collection, analysis and presentation; - reporting procedures have to be systematic, meaning that procedures have to be explicit regarding data transmission, data checking, data analysis and data presentation. As a consequence they define a reporting system as: an information system based on reports submitted to a central body using systematic reporting procedures. (Rootman & Hughes, 1980). Reporting systems have the advantage that information on drug users can be collected, which is often not covered by other data collection methods. Second, reporting systems can be set up on the basis of existing data. Furthermore, they are particularly useful to (Rootman & Hughes, 1980, p.7): - determine the incidence, prevalence and characteristics of drug users in contact with reporting institutions; - continuously measure the trends and consequences of drug use; - identify and describe groups at risk; - determine how and to what extent community agencies are used to deal with drug abuse; - assess existing efforts to treat and prevent drug abuse. Different types of reporting systems exist. In the WHO publication on drug abuse reporting systems (Rootman & Hughes, 1980), a number of elements can be found that can be used to distinguish and describe different types of reporting systems: - Event-reporting systems, case-reporting systems and case registers; - Specialised versus non specialised reporting systems; - The types of participating reporting institutions. In order to be able to describe in chapter 6 the existing reporting systems, in the Belgian substance abuse treatment centres, the authors feel that two extra classification elements should be added: - Primary versus umbrella reporting system; - Type-based and geographically-based reporting systems. 13

18 Chapter 2: Reporting systems 1. Event-reporting systems, case-reporting systems & case registers The distinction between event-reporting systems, case-reporting systems and case registers, made by Rootman & Hughes (1980), is a classification based on the degree to which systems can link different events for the same person. Event-reporting systems imply that for an individual different events can be reported. These systems cannot link events belonging to the same person and cannot extract the number of individuals from the total number of events registered. Nevertheless these systems can be important since they can alert people to emerging drug abuse phenomena. Furthermore direct costs are mostly lower than for the other two systems, confidentiality problems are less acute and fewer maintenance problems arise. On the other hand event-reporting systems also have disadvantages or limitations: first the fact that they cannot determine how many individuals are involved in the total number of events. Second the system cannot provide in follow-up information. Third, such systems cannot link information coming from different types of institutions (e.g. hospitals and police statistics). Next, validity and reliability of data in event-reporting systems is generally less certain than the data obtained through the other systems since the data managers cannot check the consistency and the accuracy of the data. Finally event-reporting systems may be less accessible for scientific research (Rootman & Hughes, 1980). Case-reporting systems on the other hand are capable of linking different events for the same person in the same institution, but they can also present the data in the way that event-reporting systems do. As a consequence case-reporting systems have the possibility to describe the characteristics of people who have particular types of drug problems and can accordingly identify high-risk groups. It can also provide a better overview at outcomes for individuals, it has a better validity and reliability and finally, due to the fact that case-reporting systems usually collect more information, they are better qualified for interpreting changes that have possibly been observed in the event-reporting systems. On the other hand these systems also have an important limitation, they cannot link events for the same person across institutions, preferably between different types of institutions (Rootman & Hughes, 1980). Finally, case registers have the possibility to link events for the same person across institutions, preferably between different types of institutions (e.g. treatment centre, police, ) but can also present the data in the way that event-reporting systems and case-reporting systems do. Characteristic for case registers is that their analytic capability and flexibility is much higher, meaning that they can present the data in the format they wish: events, cases or individuals. Furthermore case registers enable to follow people s route from one institution to another. Due to the fact that data managers can perform a larger number of checks on their data, the validity and reliability is logically higher than for the other two types of systems. Therefore case registers can more easily be used for scientific research. Possible difficulties also exist however: problems with confidentiality, the need for qualified and trained staff and higher direct costs (Rootman & Hughes, 1980). 14

19 Chapter 2: Reporting systems These types of reporting systems can be considered ranked since the type that is higher in rank can always perform all operations the one that is situated lower can do and is as a consequence more flexible and has more analytical capabilities. This classification is perhaps not ideal and should therefore not be interpreted as a rigid structure. Some reporting systems can for example combine elements of all three types or can be considered a limited version of one of them. 2. Specialised versus non specialised systems A distinction between systems that have been developed for the monitoring of drug abuse solely and systems that are monitoring a wider range of phenomena (including drug abuse) : specialised versus non-specialised systems. Specialised systems are generally more expensive but on the other hand it is possible to totally adjust them to meet the needs of the substance abuse field (planners or policy-makers). Non specialised systems are in general cheaper but the problem is that it is not always easy to ensure comparability with the specialised systems. Furthermore, such systems can only incorporate a limited number of substance-related issues, since also other problems or phenomena have to be questioned (Rootman & Hughes, 1980). 3. Types of participating reporting institutions In the report of Rootman & Hughes (1980) this topic was not addressed as such to make a classification or description of reporting systems. Nevertheless different possible participants were mentioned: emergency rooms in general hospitals, drug treatment programmes, police, medical examiners or coroners, mental health care services, general practitioners, prison medical officers, psychiatric institutions, etc 4. Primary versus umbrella reporting systems Primary reporting systems can be characterised by the fact that a central body receives information from individual treatment centres, using a systematic reporting procedure. Accordingly they are responsible for the development of registration forms or of a computer programme. Umbrella reporting systems on the other hand make use of existing primary reporting systems to gain insight into the extent and nature of a phenomenon on a larger scale. The central body of the umbrella reporting system receives information of the central body s of the primary reporting systems. In this way, an umbrella reporting system is dependent on other primary reporting systems and therefore has in general less control on data quality. One has to be aware however that certain organisations can manage a primary treatment monitoring system, as well as an umbrella treatment monitoring system. This is the case when they partly rely on other organisations and partly organise their own data collection. 15

20 Chapter 2: Reporting systems 5. Type-based and region-based reporting systems Some treatment monitoring systems are oriented towards a certain city or geographical area and generally try to extend their scope beyond one type of treatment centre. Therefore they can be called geographically-based monitoring systems. Others are oriented towards all treatment centres of a certain type and can thus be called type-based monitoring systems. Type-based monitoring systems can however contain also a certain limitative element. One can for example look at a certain type of treatment centres but only for a certain region or belonging to a certain non-profit organization. 16

21 Chapter 3: Advantages and limitations of treatment reporting systems CHAPTER 3: ADVANTAGES AND LIMITATIONS OF TREATMENT REPORTING SYSTEMS Treatment demand data can be considered a direct measure of the demand for treatment by people and an indirect indicator of more general trends in problematic substance abuse (Hartnoll et al., 1998). When drug users seek guidance or treatment for the social, psychological or physical consequences of their drug use, they become more visible and are for a certain time no longer hidden (Simon, 1997). Reporting systems on the basis of treatment (demand) data have several advantages: In first instance, the data can be used for several purposes, and this by managers as well as by epidemiologists (Tomas & Kozel, 1991). Treatment data are generally collected by practitioners (as defined in the introduction of this report). This has the advantage that they are in direct contact with drug users for clinical purposes and therefore have access to relevant information of good quality. They are specialists in the domain of substance abuse treatment and are able to follow standards and consequently deliver data with a high degree of validity and reliability (Simon et al., 1999; EMCDDA, 2000). Treatment data can be provided at low cost since mostly these data are already collected for clinical purposes (EMCDDA, 2000; Simon, 1997). That makes it possible to organise continuous data collection, instead of e.g. periodical large-scale survey research, and consequently increases the validity of the data and makes trend analysis possible (Simon et al., 1999). Treatment reporting systems however have certain limitations as well: Only a proportion of all people using drugs is actually seeking help in a treatment centre. The population covered will always be smaller than the total population of drug users (Simon et al., 1999). One can assume that especially persons with heavier patterns of drug use and experiencing more serious problems are addressing themselves to the treatment centres (Hartnoll et al., 1998; Tomas et al., 1991). The major limitation of such a client monitoring system is therefore logically that only clients are monitored and that many others who for some reason do not find the way to or do not enter in treatment are not monitored but can have a very different clinical and demographical profile (DeVillaer, 1996). The hidden population is not reached (Stauffacher, 1998; Stauffacher et al., 1999). Furthermore, not always all clients that are being treated, are not always included in the registration. Certain facilities have been deliberately excluded or do not want to participate (Simon et al. 1999). Second, one has to be aware that when using treatment data, a time lag has to be taken into account. Several years can have gone by between the first drug use and the first treatment (demand) (Stauffacher, 1997). 17

22 Chapter 3: Advantages and limitations of treatment reporting systems The extent to which treatment data reflect patterns of drug use, depends very much on the availability of services, their priorities and policies (Hartnoll et al., 1998). The availability and accessibility of treatment and also changes in the orientation of facilities can have important consequences for the size and characteristics of the treated population (Hartnoll, 1994). Furthermore, the fact that these elements can have such an influence raises some questions regarding the possibility to use treatment data for comparative objectives (Simon, 1997). An element that also has to be mentioned here is the problem of multiple countings. As long as no unique identifier is being used by reporting systems, the number of treated drug users is systematically being overestimated (Hartnoll, 1994). When reporting systems are not solely oriented towards drug users in treatment, the selection of these cases in a larger database can cause difficulties (Simon, 1997). Other sources of concern are the validity and the reliability of the data (DeVillaer, 1996; Soldz et al., 2002). The data originate from the clients themselves who could be rather reticent regarding information on their use of illegal substances. Also their mental and cognitive abilities could be disturbed at the time of registration (Soldz et al., 2002). Not only the clients, but also the role of the practitioners has to be critically examined. Although the participation of practitioners in this type of research brings along positive aspects, the other side has to be discussed as well. A first issue is the fact that in this type of registration activities, a large number of practitioners is involved (Soldz et al., 2002; Vanderplasschen et al., 2001a). This can be a source of error because the whole becomes more difficult to manage and new practitioners, entering the field, have not always received an adequate training or firsthand guidelines. Second, registration can be considered an additional assignment or even a real burden and can possibly give rise to incomplete or less careful registration (Soldz et al., 2002; Vanderplasschen et al., 2001a). Third, a certain registration fatigue can occur when practitioners have to register during too long a period (Vanderplasschen et al., 2001a), when too much information is asked, when too many registration forms have to be filled in containing the same information, when information is being asked but no feedback is given, etc. Despite the limitations of these treatment-based epidemiological data, treatment monitoring systems are generally accepted among the most valuable information sources available (Simon, 1999). 18

23 Chapter 4: The PG/EMCDDA Treatment Demand Indicator Protocol CHAPTER 4: THE PG/EMCDDA TREATMENT DEMAND INDICATOR PROTOCOL On different levels treatment reporting systems were being developed, introduced and improved but only during the eighties a start was made within the framework of the Pompidou Group (PG) of the Council of Europe to combine efforts and to come to a comparable international instrument (Stauffacher & Kokkevi, 1999). Based on the multi-city project of the Pompidou Group (since 1982) and on city-based pilot and other complementary studies (from 1989 onwards), the definitive protocol was finalised in This protocol is a standard framework for collecting data on clients who contact treatment centers that contains a number of core variables, methodological guidelines with regard to definitions, classification of treatment centres and data collection (Hartnoll, 1994). During the nineties the efforts and competencies of the European Union with regard to drug issues have expanded. First, in 1992 the Amsterdam Treaty laid the foundations for a general European approach of drug problems across the individual policy domains. Subsequently in 1997, within the Maastricht Treaty these decisions were further elaborated. One of the new explicit objectives of the European Union is explained in article 152. As opposed to the Rome Treaty of 1957 and the Amsterdam Treaty of 1992, the European Union now possesses the legal grounds to initiate actions to improve public health whereas before only legal grounds were present to protect public health (Europese Commissie, 2002). As a consequence of these evolutions, in 1989 the European Information Network on Drugs and Drug Addiction (REITOX) and in 1993 the European Monitoring Centre for Drugs and Drug Addiction (EMCDDA) were founded. The main objective of the EMCDDA is to provide the Member States of the EU, the European Commission and the European Parliament with reliable and comparable information on drugs and related subjects. One of the indicators used by the EMCDDA is the Treatment Demand Indicator (TDI). Based on the existing Pompidou Group Protocol and several EMCDDA studies and projects the EMCDDA and the different partners of the REITOX network have elaborated the Joint Pompidou Group EMCDDA Treatment Demand Indicator Protocol version 2.0. (EMCDDA, 2000) that has been set up for treatment demand monitoring at a national level, whereas the Pompidou Group Protocol was rather city-based. The value of this Pompidou Group Protocol should nevertheless not be underestimated. The European Councils of Helsinki (December 1999) and Feira (June 2000) have further taken on the challenge and have respectively approved the European Union Drugs Strategy and the EU Action Plan on Drugs (Europese Commissie, 2002). Besides the explicit mention in this Action Plan, the Treatment Demand Indicator was also subject of the Council Resolution on the implementation of the five key epidemiological indicators on drugs of November

24 Chapter 4: The PG/EMCDDA Treatment Demand Indicator Protocol The Standard TDI Protocol itself and its Technical Annex provide a classification of treatment centers, definitions of concepts and guidelines on methods of collection, analysis and reporting. It also comprehends a list of 20 core variables which have to be collected for each client starting treatment and which can be classified into three categories: treatment contact details, socio-demographic information and drug-related information (Table 2). Countries are free to collect more data or to use other methods or categories but ultimately countries should be able to draw the variables that are described in the Protocol out of their data sources (EMCDDA, 2000). All member states are expected to collect the treatment demand data according to this protocol and to provide those figures on a regular basis to the EMCDDA through the national REITOX Focal Points. For Belgium the national Focal Point is situated in the Epidemiology Unit of the Scientific Institute for Public Health. Due to the specific Belgian situation four Sub-Focal Points have been designated: the VAD for the Flemish Community, Eurotox for the French Community, CTB/ODB for Brussels Capital Region and ASL for the German-speaking Community. The Sub-Focal Points are expected to group the data for their respective Community or Region together. Table 2: List of twenty core variables in the Joint Pompidou Group EMCDDA Treatment Demand Indicator Protocol version 2.0. Drug related information Treatment contact details Socio-demographic information 1. Treatment centre type 6. Gender 14. Primary drug 2. Date of treatment: month 7. Age 15. Already receiving substitution treatment 3. Date of treatment: year 8. Year of birth 16. Usual route of 4. Ever previously treated 9. Living status (with whom) administration 17. Frequency of use 5. Source of referral 10. Living status (where) 18. Age at first use 11. Nationality 19. Other (secondary) drugs currently used 12. Labour status 20. Ever injected / 13. Highest educational level completed currently injecting The Protocol has a long history and can therefore be seen as the final result of a long period of discussions and negotiations. On the other hand, this Protocol should be considered as a starting point and not as the final result, as has been stated in the Protocol (EMCDDA, 2000, page 7): 20

25 Chapter 4: The PG/EMCDDA Treatment Demand Indicator Protocol This paper is the first version of this Treatment Demand Indicator (TDI) Protocol The data-collection process and the new experiences associated with the TDI will be comprehensively evaluated and if necessary changes and additions will be made to the protocol. Because drug use and users as well as drug treatment itself are constantly changing, this evaluation phase will not be the final one. If required, the protocol will be reconsidered and revised every five years 21

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27 Chapter 5: Substance abuse treatment in Belgium CHAPTER 5: SUBSTANCE ABUSE TREATMENT IN BELGIUM In Belgium a large diversity of treatment possibilities exist for people with drug problems. Not only with regard to the types of treatment centres, but also regarding the specific methods of treatment that are used. Furthermore, due to the organisation of the Belgian state structure with its different policy levels (the federal level, the communities and regions), not all types of treatment centres fall under the same legislation or the same financial regulations. Treatment centres might fall under different policy levels, but also under different policy domains (e.g. public health, internal affairs). Moreover, often several authorities are involved at the same time and consequently the division of competencies between them is not always clear. Because of the fact that for the further course of this report the competent and subsidising policy level is important, the different types of treatment centres will be presented according to this criterion. In first instance a number of treatment centres specialised in (illegal) substance abuse treatment have gradually entered into a so-called revalidation agreement with the National Institute for Invalidity and Health Insurance and consequently fall under the authority of the federal policy level. These centres are often referred to as the specialised substance abuse treatment centres with RIZIV/INAMI 1 convention. Most of these centres are exclusively oriented towards people with illegal drug problems. Some of them have added a clause in their agreement that allows them to take up a limited number of people with primary alcohol problems. By the end of the year 2000, 28 centres (possibly with different units or treatment modules) were working within the framework of such a financial agreement with the RIZIV/INAMI. Within this group of treatment centres a distinction has to be made between four different types of treatment centres: long-term residential programmes (the therapeutic communities); the residential crisis intervention centres; the ambulatory centres and the medical social reception centres (MSOC/MASS 2 ). In 2000, 14 long-term residential treatment centres, 8 crisis intervention centres, 7 ambulatory centres and 8 medical social reception centres had entered in an agreement with the RIZIV/INAMI (INAMI, 2001). This number of centres stayed stable until 1 April 2003, when a new medicalsocial reception centre entered in an agreement with the RIZIV/INAMI. A second group of services where people with drug problems can turn to are the psychiatric hospitals (PZ/HP 3 ) and the psychiatric wards in general hospitals (PAAZ/ SPHG 4 ). These treatment centres are as such not exclusively oriented towards people 1 The Rijksdienst voor Invaliditeit en Ziekteverzekering (RIZIV) and Institut National d Assurance Médicale et Invalidité (INAMI) are the respective Dutch and French terms for the National Institute for Invalidity and Health Insurance in Belgium. 2 Medisch-Sociaal Opvang Centrum (MSOC) and Maison d Acceuil Socio-Sanitaire (MASS) are the respective Dutch and French terms for Medical social reception centre. 3 Psychiatrisch Ziekenhuis (PZ) and Hôpital psychiatrique (HP) are the respective Dutch and French terms for psychiatric hospital. 4 Psychiatrische Afdeling van een Algemeen Ziekenhuis (PAAZ) and Service Psychiatrique des Hôpital Général (SPHG) are the respective Dutch and French terms for psychiatric ward in a general hospital. 23

28 Chapter 5: Substance abuse treatment in Belgium with illegal drug problems; on the contrary, a variety of psychiatric problems are treated. On the other hand, due to the specific characteristics of their client population, it is possible that certain PZ/HP or PAAZ/SPHG have decided to create a specialized substance abuse unit. Naturally, all of these treatment centres follow the same general regulations as other hospitals and are therefore mostly subject to federal legislation. The policy level of the communities has however certain competencies on the matter (e.g. quality assurance). A third group of treatment centres that plays a significant role in the treatment of substance abuse problems are the Centres for Mental Health Care. As well as the PZ/HP and the PAAZ/SPHG, these centres treat a large number of psychological or psychiatric problems. Certain CGG/SSM 5 have however developed a certain specialisation in the treatment of drug problems. According to the principles of the Belgian state structure, where the communities are responsible for certain attributed person related matters, the CGG/SSM can be situated exclusively under the competences of this policy level. Due to historical and pragmatic reasons however, the responsibility for the SSM in the French-speaking part of Belgium has been transferred to the Walloon Region instead of the French Community. Although these three groups of treatment centres can be considered to take up a large part of drug users starting treatment in Belgium, the group of other treatment facilities for persons with drug problems should not be ignored or underestimated. Other types of treatment or guidance than the ones mentioned above are: general practitioners, self-employed psychologists or psychiatrists, emergency wards in general hospitals, initiatives in the general health or social welfare sector, street corner work, nonsubsidized initiatives, half way houses, sheltered living, temporary projects, self-help groups, etc (BIRN, 2002). Certain types of treatment centres run parallel in the different parts of Belgium since they are subsidized at the federal level. Other services are organised or represented in a different manner. General practitioners for example tend to play a larger role in substitution treatment in Brussels and the French Community than in the Flemish part of Belgium (EMCDDA, 2002). When describing the diversity of treatment possibilities, the focus was on the different treatment centres, but one should be aware of the recent evolutions concerning care circuits and the used concepts. When looking at different treatment possibilities in the context of a care circuit, one no longer makes the distinction between treatment centres, but the focus is on different the modules that can be offered. A care circuit forms the complete offer of care of a network, for a certain target group in a certain region. Such a circuit consists of units of care that offer certain modules. These modules represent the necessary care routes for that specific target group and 5 Centrum Geestelijke Gezondheidszorg (CGG) and Service de Santé Mentale (SSM) are the respective Dutch and French terms for Centre for Mental Health Care. 24

29 Chapter 5: Substance abuse treatment in Belgium offer the guarantee of continuity in care and care adapted to the specific needs of the client (Nassen et al., 1999). In mental health care and youth assistance, as in the assistance for drug users, the organization of care by networks in the form of care circuits, becomes more and more of a common thought. Care adapted to the client, continuity of care, collaboration and more effective and efficient care are central concepts (Vanderplasschen et.al., 2001b). 25

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31 Chapter 6: Treatment reporting systems in Belgium CHAPTER 6: TREATMENT REPORTING SYSTEMS IN BELGIUM In Belgium different treatment monitoring systems exist, each with its own characteristics, strengths and limitations. In this chapter the existing reporting systems in Belgium will be described, that have the possibility to provide data on drug users in treatment. First the primary treatment reporting systems will be presented, followed by the umbrella treatment reporting systems. The second classification element that has been used to present the systems is the difference between type-based and geographically-based reporting systems. All systems will also be situated in the light of the other 3 classification elements mentioned in chapter 2: event-reporting systems, case-reporting systems & case registers; specialised versus non specialised reporting systems and types of participating reporting institutions Primary treatment reporting systems In order to be acknowledged as a primary treatment monitoring system in this report, an established organisation (a central body) had develop a reporting system in which more than one treatment centre is involved and which was established with a long-term perspective. The central body is responsible for the development of registration forms or of a computer programme for the treatment centres, that use a systematic reporting procedure. The system has the collection of raw data on drug users in treatment as a first objective or it has the possibility to select those cases out of a larger database. The existing primary treatment monitoring systems in Belgium have been set up out of different concerns and interests. Some are oriented towards a certain city or geographical area (e.g. Sentinelle Charleroi ) and try to go beyond one type of treatment centre. Therefore they can be called geographically-based monitoring systems. Others are oriented towards all treatment centres of a certain type (e.g. the reporting system of the Institut Wallon pour la Santé Mentale (IWSM) ) and can therefore be called type-based monitoring systems. Type-based monitoring systems can however also contain a certain limitative element. One can for example look at a certain type of treatment centres but only for a certain region (e.g. the treatment reporting system of the IWSM only covers the Centres for Mental Health Care in the French-speaking part of Belgium) or belonging to a certain non-profit organization (e.g. the treatment reporting system of De Sleutel). According to the above-mentioned criteria table 3 summarizes the different primary treatment monitoring systems in Belgium and their coordinating organisations. In case the monitoring system has been given a name, this is mentioned in the table. Next a description is made of the different primary treatment reporting systems, ordered alphabetic according to the central body s. 27