Long stay patients in T-beds- Supplement KCE reports 84S Federaal Kenniscentrum voor de Gezondheidszorg Centre fédéral d’expertise des soins de santé Belgian Health Care Knowledge Centre 2008 The Belgian Health Care Knowledge Centre Introduction : The Belgian Health Care Knowledge Centre (KCE) is an organization th of public interest, created on the 24 of December 2002 under the supervision of the Minister of Public Health and Social Affairs. KCE is in charge of conducting studies that support the political decision making on health care and health insurance. Administrative Council Actual Members : Gillet Pierre (President), Cuypers Dirk (Deputy President), Avontroodt Yolande, De Cock Jo (Deputy President), Demeyere Frank, De Ridder Henri, Gillet Jean-Bernard, Godin Jean-Noël, Goyens Floris, Maes Jef, Mertens Pascal, Mertens Raf, Moens Marc, Perl François, Van Massenhove Frank, Vandermeeren Philippe, Verertbruggen Patrick, Vermeyen Karel. Substitute Members : Annemans Lieven, Bertels Jan, Collin Benoît, Cuypers Rita, Decoster Christiaan, Dercq Jean-Paul, Désir Daniel, Laasman Jean-Marc, Lemye Roland, Morel Amanda, Palsterman Paul, Ponce Annick, Remacle Anne, Schrooten Renaat, Vanderstappen Anne. Government commissioner : Roger Yves Management Chief Executive Officer : Dirk Ramaekers Deputy Managing Director : Jean-Pierre Closon Information Federaal Kenniscentrum voor de gezondheidszorg - Centre fédéral d’expertise des soins de santé. Wetstraat 62 B-1040 Brussels Belgium Tel: +32 [0]2 287 33 88 Fax: +32 [0]2 287 33 85 Email : Long stay patients in T-beds- Supplement KCE reports 84S REBEKKA VERNIEST, ANNOUSCHKA LAENEN, ANJA DAEMS, LAURENCE KOHN, GUILLAUME VANDERMEERSCH, VALERIE FABRI, RAF MERTENS, CHANTAL VAN AUDENHOVE, MARK LEYS Federaal Kenniscentrum voor de Gezondheidszorg Centre fédéral d’expertise des soins de santé Belgian Health Care Knowledge Centre 2008 KCE REPORTS 84S Title : Long stay patients in psychiatry T-beds - Supplement Authors : Rebekka Verniest (IMA), Annouschka Laenen (Censtat UH), Anja Daems (Lucas KUL), Laurence Kohn (KCE), Guillaume Vandermeersch (IMA), Valerie Fabri (IMA), Raf Mertens (IMA), Chantal Van Audenhove (Lucas KUL), Mark Leys (KCE) External experts : Paul Cosyns (UZA), Geert Dom (Duffel Psychiatrisch Ziekenhuis), Guy Jonard (Beauvallon), Isidore Pelc (ULB), Jozef Peuskens (KUL), Jean-Paul Rousseaux (UCL). Acknowledgements : Stefaan Vandesande (KCE), Frank Hulstaert (KCE), Carine Van de Voorde (KCE), Jean-Pierre Gorissen (FOD/SPF Santé Publique). External validators : Philippe Delespaul (Universiteit Maastricht), Stefan Priebe (University of London), Durk Wiersma (Universiteit Groningen). Conflict of interest : None declared, the experts all work in psychiatry Disclaimer : The external experts collaborated on the scientific report that was subsequently submitted to the validators. The validation of the report results from a consensus or a voting process between the validators. Only the KCE is responsible for errors or omissions that could persist. The policy recommendations are also under the full responsibility of the KCE. Layout : Ine Verhulst th Brussels, 17 July 2008 Study nr 2006-14 Domain : Health Services Research MeSH : Mental Health Services ; Mental Disorders ; Psychiatry ; Long-Term Care; Hospitalization NLM classification : WA 495 Language : English, French Format : Adobe® PDF™ (A4) Legal depot : D/2008/10.273/48 Any partial reproduction of this document is alowed if the source is indicated. This document is available on the website of the Belgian Health Care Knowledge Centre. How to refer to this document? Verniest R, Laenen A, Daems A, Kohn L, Vandermeersch G, Fabri V, et al. Long stay patients in psychiatry T-beds - Supplement. Health Services Research (HSR). Brussels: Belgian Health Care Knowledge centre (KCE); 2008. KCE reports 84S (D/2008/10.273/48) KCE Reports 84 Long stay patients in T-beds-Supplements 1 Appendix 1: LITERATURE REVIEW: SEVERELY AND PERSISTENTLY MENTALLY ILL PERSONS IN LONG-STAY PSYCHIATRIC HOSPITAL BEDS: DEFINITIONS, PROFILE AND REINTEGRATION POTENTIAL INTRODUCTION This chapter focuses on the available knowledge and evidence in literature related to “long stay hospitalised psychiatric patients”. It reports on knowledge available in literature related the issue of long stay psychiatric patients and persons with severe and persistent complex mental illnesses. Firstly, information on the relation between the problem of long stay psychiatric patient and issues of “chronicity” and “severity” in psychiatry was searched. This question is a stepping stone to be able to study the question of the boundaries between residential and community treatment for people with mental disorders. Secondly,, the notion of “long stay psychiatric patients” was explored. Thirdly, we seeked which part of the long-stay hospitalised patients could receive care in alternative setting (reintegration or reorientation). METHODOLOGY As a starting point we selected all publications of the 13-year comprehensive and well- documented program of the Team for the Assessment of Psychiatric Services (TAPS Project), conducted from 1985 to 1998 in London. In addition, we searched for recent publications by means of an international database search, snowballing, handsearching, and a grey literature search. Scientific literature International database search Databases consulted were: MEDLINE (via Pubmed), EMBASE, PsycINFO (via ERL Webspirs) and Social Sciences Citation Index (SSCI) - Science Citation Index Expanded (SCI-EXP) (via ISI Web of Knowledge). The search in the databases was limited to publications published between 1980 and 2007 in English, Dutch or French. Keywords The following keywords were used, combined with OR within rows and with AND between rows: 2 Long stay patients in T-beds-Supplements KCE reports 84 Table 1: Keywords used for the identification of the literature about severely mentally ill persons and inpatients and reintegration: SSCI, SCIEXP, Medline, Psychinfo Embase SMI mentally ill, mental illness mentally ill, mental illness severe(ly), persistent(ly), chronic(ally) severe(ly), persistent(ly), chronic(ally) definition(s), defining definition(s), defining Long-stay inpatients long-stay long-stay psychiatry / psychiatric, mental illness / Emtree: Mental Disease, Mental mentally ill Patients community, deinstitutionalize / Free text: Psychiatry/ psychiatric, deinstitutionalization, reintegrate / mental illness / mentally ill reintegration, rehabilitate / rehabilitation, resettle / resettlement, relocate / relocation, reprovision Emtree: Mental Hospital, Hospitalization, Institutional Care, Hospital Patient, Hospital Discharge Free text: community, deinstitutionalize / deinstitutionalization, reintegrate / reintegration, rehabilitate / rehabilitation, resettle / resettlement, relocate / relocation, reprovision, reinstitutionalization, revolving door The keywords referring to reintegration in the community directed our search to research conducted in the context of deinstitutionalization. Most research on long-stay psychiatric inpatients is inspired by the deinstitutionalization and psychosocial rehabilitation movement in mental health care. Moreover, our intention was not to describe the population of the severely and persistently mentally ill in an exhaustive way, but to focus on literature dealing with the reintegration potential of this target audience. Additional keywords were used in EMBASE referring to hospitalization were included, as well as keywords referring to reinstitutionalization and the revolving door phenomenon. Inclusion and exclusion criteria The literature selection was conducted on the basis of title and abstract. When in doubt, a brief examination of the full text was performed. SMI patients: Publications were included when the focus of the article was explicitly on the pursuit of a definition or an operational definition for severe and persistent mental illness. Publications were excluded that merely mentioned a definition or used an operational definition as a starting point for research featuring the population of severely and persistently mentally ill persons (e.g. prevalence studies). We did however include this type of publications when originating from Belgium or the Dutch language area, as an illustration for the use and relevance of definitions put forward in international literature for the Belgian situation. KCE Reports 84 Long stay patients in T-beds-Supplements 3 Long-stay inpatients We did not impose inclusion or exclusion criteria with respect to publication type and methodology. Publications were included when explicitly discussing the reintegration potential or the outcome of community placement of our target population (long-stay psychiatric inpatients). So were articles providing an explicit description of the characteristics of (former) long-stay psychiatric inpatients in the context of deinstitutionalization measures. The database search was limited to studies published between 2000 and 2007. Also, selected publications were conducted in Western culture countries and reported on in English, French or Dutch. Studies focusing on specific patient groups (e.g. dementia, intellectual disability, etc.) were excluded. Search results of the scientific literature are summarized in the table in appendix. Grey literature search Grey literature was predominantly retrieved through previous research experience in Lucas research centre. We also searched on the websites of the Trimbos Institute, the Rob Giel Onderzoekcentrum, DAREnet and the website of Kenniscentrum Rehabilitatie in the Netherlands. Snowballing and handsearching Reference lists of selected articles were checked. Also, we handsearched two Dutch language journals available in our research centre: ‘Passage/Tijdschrift voor Rehabilitatie’ and ‘Maandblad Geestelijke Volksgezondheid’. Description of selected literature Search results are summarized in the tables in appendix. For SMI definition, we retrieved all publications explicitly focusing on the pursuit of a definition or the process of defining the population of the severely and persistently mentally ill. Most publications mentioning a definition in the Dutch language area, used it as part of an operationalisation for research purposes. These publications were mostly found by means of our grey literature search, snowballing and handsearching. As a result of our grey literature search, we added two publications: one from the Lucas research centre and one from the Trimbos institute in the Netherlands. Strictly speaking, the latter publication fell just outside our publication time limit, but we decided to include it due to the scarcety of publications explicitly focusing on long-stay psychiatric inpatients. Most selected studies are descriptive follow-up studies, describing the profile of (former) long-stay psychiatric inpatients and reporting on the outcome of hospital discharge in the context of deinstitutionalization. 4 Long stay patients in T-beds-Supplements KCE reports 84 DEFINING THE SEVERELY AND PERSISTENTLY MENTALLY ILL PERSONS In this section, we focus on the profile of long-stay psychiatric patients, starting with a definition of severe and persistent mental illness and ending with a description of the main characteristics of the severely and persistently mentally ill in light of their potential to return to the community. Different concepts and wordings have been used over time to speak about mental illness: ‘long-term mentally ill’, ‘chronically mentally ill’, ‘seriously mentally ill’, ‘persons 1 with severe and persistent mental illness’ ‘persons in need for continuous care’ . Some rather recently published articles have addressed the issue of identifying the people with 1-3 4 5 chronic mental illness ; . This question of tracing the population came along with the 6 7 issue of deinstitutionalization, and the demand to plan for alternative services ; . The shifts in the pattern and locus of mental health care had resulted in a lack of information on the problem of (in that time labelled) chronic mental illness. It also induced a lack of 2 8 consensus on the boundaries that define the “chronically” mentally ill population . In recent years, in order to avoid the association with the outdated and pessimistic concept of continuous and untreatable illness, the expression ‘‘severe and persistent’’ 5, 9 for persons with long-term psychiatric conditions has replaced the word ‘‘chronic’’, . Criteria to define severe and persistent mental illness Before deinstitutionalization, the only criterion to identify chronicity in mental illness was the time of hospitalization. With deinstitutionalization, the need for an altered, 8 more refined view arose . 2 Goldman was one of the first to develop a detailed definition of the chronically mentally ill population based on 3 criteria: diagnosis, disability, duration of illness (DDD), the institutional and community settings in which chronic mental patients may be found. These criteria were later used in the definition of serious mental illness (SMI) published 10 by the US National Institute of Mental Health (NIMH) and are reflected in many official designations of chronic mental illness in the United States. However, there was no consensus on the specific character or relative importance of 8 the DDD criteria nor on the nature of the interrelationships among these elements . Following Bachrach, this lack of conceptual consensus would hamper uniformity in service planning and research on the chronic mentally ill. Similar remarks have been 7 formulated for the UK situation by Slade and colleagues : “An ideal operationalized definition of severe mental illness will reliably identify the severely mentally ill and will exclude all others. Most attempts to identify the severely mentally ill involve the setting of thresholds in a number of dimensions. However, even at an international level there is a lack of consensus even about the relevant dimensions”. Schinnar and colleagues identified 17 definitions of the severely and persistently mentally ill in the literature in the ’80’s. They reported that prevalence rates of serious mental illness in the population are spreading from 4% to 88%, depending on the definition applied. The definition with the widest measure of consensus and most representative 11 of the middle range of prevalence was the DDD-definition of the NIMH . In the Dutch language area, DDD-working definitions proved their usefulness in several research studies focusing on prevalence and care needs of severely and persistently 12 13 14 15 16 mentally ill patients. Examples include De Rick , Kroon , Michon , Theunissen , 17 18 19 20 Van Audenhove and Wiersma . In most of these studies, severe and persistent a mental illness is defined as a DSM-psychiatric diagnosis , with illness duration of more than two years and sustained disability in psychological and social functioning. 7 Slade et al. reviewed definitions used in research and in current practice in the United Kingdom. They suggested that a definition of severe mental illness should involve five a The Diagnostic and Statistical Manual of Mental Disorders (DSM) is an American classification of mental disorders and criteria for diagnosing them. It is used worldwide for clinical, research and insurance purposes KCE Reports 84 Long stay patients in T-beds-Supplements 5 dimensions: safety, informal and formal support, diagnosis, disability, and duration (SIDDD), and this, when the problem lasting between 6 months and two years. According to these authors, these criteria should offer a framework for developing definitions of severe mental illness at the local level, and, thereby identifying the priority group of people with the most need for mental health care. More recently, a working definition based on the disability and duration (DD) criteria 5 alone, was compared with the diagnosis of psychosis . In this study, the DD operational 3 definition proposed by Ruggeri et al. was used, defining SMI in terms of a Global Assessment of Functioning (GAF) score of less than 50 and a minimum of two years of mental health service contact. Results showed overall high predictive and external validity of the DD working definition and high sensitivity in predicting those patients with serious burden of mental illness. In order to identify patients with high care needs, the DD working definition seemed more useful than a definition simply based on diagnostic criteria. Overall, the disability criterion does seem to have gained more weight relative to the diagnosis criterion, in research as well as in recent mental health policies. Diagnosis does not efficiently measure impairment severity and need for treatment or care. and is 4 not a fair or effective way to manage scarce resources . Also, the World Health Organization – although not forwarding a formal definition – suggests that the focus in mental health care should be on disability, rather than diagnosis. This is illustrated in the International Classification of Functioning, Disability and Health (ICF). While the disability and duration criteria might prove satisfactory in determining global health policy and general service needs on the basis of prevalence studies, the additional criteria of support (including informal support and availability of formal support in the immediate surroundings), safety (including vulnerability and risk to self or others) and diagnosis may be important factors to take into account when making decisions about specific services provided at the local level . They are difficulties to determine operational definitions based on the literature: for 7 example, the duration criterion can vary between six months and two years and is either formulated in terms of onset of mental problems or in terms of treatment and 1 service use. Barr and Cotterill found considerable disagreement in identifying the severely and persistently mentally ill, even when an agreed upon SIDDD-definition was used. They plead for clear operational definitions and prescriptive categorization guidelines in addition to a widely accepted definition. Conclusion In the last 25 years, three important criteria for defining the population of severely and persistently mentally ill persons have been proposed and used by several authors: diagnosis, disability and duration. Most recently, however, the disability criterion has gained more weight relative to the diagnosis criterion in measuring severity of illness and the need for treatment or care. In addition, other criteria such as safety and support have been put forward by some authors. • Important criteria for defining the population of the severely and persistently mentally ill are diagnosis, disability, duration, safety, support. • The Disability criterion is more important than “diagnosis” in measuring severity and need for treatment or care. 6 Long stay patients in T-beds-Supplements KCE reports 84 DEFINING LONG-STAY SEVERELY MENTALLY ILL INPATIENTS: OPERATIONAL DEFINITIONS Besides the “definition” issue of the overall population of severe mentally ill persons, and related to the purpose of our research, we also tried to identify criteria used to identify “long stay” patients. Length of stay There is a lack of a consensual definition of long-stay hospitalization in the literature. However, some indications can be found on the operationalisations of long-stay in different researches. Following the TAPS project, operational definitions for ‘long-stay’ in recent studies are mostly set at a cut-off point of one year continuous hospitalization. However, many variations are possible. 21 • One year operational definitions are used in studies in the United Kingdom , 22 23 24 ; the United States and Canada ; 25 26 • Six months in a German and a Finnish study .; 27 • Between 6 months an three years in a UK study 28 29 30 31 • Two years in an Australian study , , , and a study from the Netherlands 32 ; • Three years in a United States study based on the observation of a significant 33 turnover in the population of patients during the first three years of stay. 13 • Five years in a Belgian study . • A French study of a random sample of inpatients in different psychiatric 34 institutions found that 41% of the patients were admitted for more than one year, 23% stayed over five years, and 10% over 18 years. • In an overview of case studies in three Western countries (Philadelphia, 35 South Verona, and London) , cut-off points of one and five years were considered relevant in distinguishing ‘old’ long-stay patients from new long- stay patients: During the peak years of deinstitutionalization in the United States, the old long-stay population declined rapidly, whereas the population with a length of stay between one and five years remained stable. Many studies focus on a population of hospitalized patients. But in the context of progressing deinstitutionalization, the notion of long stay in a Danish study was used for 36 37 heavy users of inpatient, day-patient or outpatient hospital services , . In a German Study long stay was used for people who live in a psychiatric residential home for at least four quarters within two successive years or who had an transfer to an in-patient 38 nursing institution Some studies apply, besides length of stay, additional criteria, such as diagnosis, age, 13 28 29 25 39 level of functioning, etc. , , , . One Italian study includes all discharged patients of a hospital, regardless of length of stay, diagnosis, etc. Old & new long stay patients and difficult to place patients Since the so-called deinstitutionalization, a differentiation has been made between old and new long stay patients. The term “old long stay” patients is used for a group of patients that were hospitalized before deinstitutionalization set through in a health care system. New long stay patients, are the people fitting the defined thresholds after the formally imposed reduction of the number of beds. Of course, it is very difficult to use a standardized date of this term, because of the different timing of the onset of deinstitutionalization in different countries. But if we look at patient characteristics, the 34 conceptual difference is important. Almost half of study group in the TAPS project consisted of long-stay patients who had been in hospital for more than 20 years before the closure of 2 London (UK) psychiatric hospitals in the early 1990s. These people were labelled old long stay. New admissions after the onset of the study, but with a length of stay of one year were