Treatment effect and recovery dilemmas in dual diagnosis treatment

Transcription

1 Overview BIRGITTE THYLSTRUP KATRINE SCHEPELERN JOHANSEN LOTTE SØNDERBY Treatment effect and recovery dilemmas in dual diagnosis treatment Introduction A large amount of research has established that co-morbidity of substance abuse disorders (SUD) and mental illness is the rule rather than the exception, and that individuals with such a dual diagnosis often will need treatment for both problems (Lehman 1989; Minkoff et al. 2001). While measures of treatment outcome and treatment effect constitute an ongoing debate within substance abuse and psychiatric treatment in general, the multiple and often more or less chronic problems of the dually diagnosed (DD) patient population lead to additional issues regarding standards for treatment effect and outcome measures. In our work as both clinicians and researchers within the DD field, we have experienced that traditional outcome measures often appear inadequate in regard to capturing the complex situation of people with a dual diagnosis. Some of the key issues we have addressed and found important are 1) Which is the best way to measure treatment effect in a patient population that presents a variety of multiple problems? 2) What measures are necessary in order to assess a positive treatment outcome and effect over time? 3) Within what time span should improvements related to specific treatment interventions be assumed to take place? and 4) What type of improvement can be expected from the various patient groups? In our view, these issues describe important areas and challenges in the development of standardized DD treatment outcome and effect measures. The issues at the same time illustrate dilemmas and discrepancies in expectations of short and long-term benefits that may specifically be related to such standardization within DD treatment. We have chosen to put these dilemmas into perspective by contrasting them with the debate on recovery that is taking place at the mo- 552 NORDIC STUDIES ON ALCOHOL AND DRUGS VOL

2 ment, briefly touching on harm reduction issues. Prevalence, problems, and treatment The actuality of this debate is supported by studies showing a high prevalence of individuals with comorbid problems both within substance abuse treatment and psychiatric treatment. It has been suggested that between 25 and 35% of individuals with a severe mental illness (e.g. schizophrenia, schizoaffective disorder and bipolar disorder) have manifested substance use disorders over the past 6 months (Drake & Mueser 2000). Another study, the Epidemological Catchment Area study from 1990, found that the rate of lifetime SUD in the general population was 17% compared to 48% for people with schizophrenia and 56% for people with a bipolar disorder (Regier et al. 1990). The National Comorbidity Survey (NCS) from 1996 indicates that % of individuals with a lifetime addictive disorder have at least 1 mental disorder, whereas 50.9% of individuals with a mental disorder have at least one addictive disorder (Kessler et al. 1996). To our knowledge epidemiological studies of this size have not yet been carried out in the Nordic countries, but there is no evidence that the situation should be much different here. There is considerable evidence that comorbid disorders are more severe and chronic than single psychiatric disorders (Magura 2008). More than 100 studies have found that DD is associated with higher rates of negative treatment outcome, i.e. medication non-compliance, relapse and re-hospitalization, unstable housing and homelessness, violence, legal problems and incarceration, depression and suicide, severe financial problems, family burden and high rates of sexually transmitted diseases (Drake & Mueser 2000). Positive treatment outcome and effects are also challenged by the fact that many DD patients find that substance use enhances social opportunities, helps them deal with boredom, anxiety and dysphoria, and is an important source of recreation (Drake & Mueser 2000; Gregg, et al. 2007). The plethora of treatment needs combined with the fact that recent research indicates that effective DD treatment programmes integrate mental health and substance abuse interventions (Barrowclough et al. 2001; Drake et al. 1998; Minkoff 2001) have resulted in the development of integrated treatment programmes seeking to incorporate the diverse patient needs. Integrated treatment finds its justification in the coordination of mental health and substance abuse interventions, regarding mental illness and substance abuse as two primary illnesses that both require assessment and classification in the stabilizing phase (Lehmann et al. 2000; Minkoff 2001). While the guidelines and research supporting integrated treatment have received much positive attention, no consistent evidence has been found supporting specific psychosocial interventions for substance reduction of people with a serious mental illness compared with standard care (Cleary et al. 2008). However, the variance in research methods, sample characteristics and treatment offers and adherence partly explains this lack of significant findings (Cleary et al. 2008) Still, the past several years have endorsed integrated dual disorders treatment offers that often include assertive NORDIC STUDIES ON ALCOHOL AND DRUGS V O L

3 outreach, group and individual substance abuse interventions, motivational interventions, staged treatment, family interventions and comprehensive services, including housing and employment support (Drake 2001). Integrated treatment, as well as other treatment approaches, reflects that the last decades have seen a growth in the development of treatment programmes whose qualifications are explained by being based on evidence-based research on DD treatment programmes. The focus on evidence-based research is a logical and qualified response to a previous lack of structured data on treatment outcome and effect of DD treatment programmes (Jeffrey 2007). However, the focus of and value given to evidencebased research also calls for a critical debate about which measures are relevant and constructive when defining treatment results related to DD. Treatment effect and recovery Reflections on how to measure treatment outcome and effect within DD treatment is closely linked to deliberations on what improvement can be expected in the DD patient population, keeping in mind that DD patients form a heterogeneous group with sub groups representing various combinations of mental illness, substance abuse and psychosocial problems, not to mention economic, physical and forensic problems. As mentioned in the introduction we find that a debate on the use of standardized DD treatment measures can benefit from paying attention to the debate on how to define patient recovery within substance abuse and psychiatric treatment. Firstly, this debate shows that the growing attention on the multiple problems associated with the lives of many DD patients also should be considered in treatment focus and interventions, as well as in evaluation of both short and long-term outcomes. Secondly, the debate shows how different perspectives and definitions are often related to differences in traditions and cultures, such as those between substance abuse and psychiatric treatment. Since DD patients often travel between these treatment facilities, these differences carry considerable weight in the choice of the actual treatment interventions and in perspectives on patient improvement. These differences may challenge the ongoing debate about what type of treatment effect to expect or anticipate in DD treatment. Within psychiatry, recent decades have seen a re-orientation towards using the terminology of patient recovery when describing patient remission from severe and long-term mental illness. In 1999, the US Surgeon General urged all mental health systems to adopt a recovery orientation (General Surgeon 1999; Turner-Crowson & Wallcraft 2002), and in Denmark, the parliament passed a request to the government on initiating endeavours focusing on recovery in 2001 (Eplov et al. 2005). The development is partly caused by a growing body of consumer empowerment organizations and individual patient stories, highlighting the value of patient perspectives on DD patients course of illness, supported by a shift in perspective on the long-term prognosis of severe mental illness as such (Eplov et al. 2005; Turner- Crowson & Wallcraft 2002). Within substance abuse treatment and research, the recovery orientation has re- 554 NORDIC STUDIES ON ALCOHOL AND DRUGS V O L

4 emerged in recent decades, partly as a response to the traditional evaluation of post-treatment outcome assessment advocating that broader outcome measures replace the traditional evaluation approach which often focuses on outcome measures such as days of abstinence, employment and crime (McLellan et al. 2005; White 2007). At the same time, the implementation of recovery as an outcome measure is challenged by the fact that the term is used both when referring to patients abstinence from addiction and when referring to a less simple but more comprehensive description of patient improvement such as abstinence combined with an improved function and quality of life (Laudet 2008). In order to clarify what the term recovery refers to, aiming at supporting service development, research and understanding within the addiction field, the Betty Ford Institute Consensus Panel drew up an operationally defined measure of recovery in 2007, formulating recovery as a voluntarily maintained lifestyle characterized by sobriety, personal health, and citizenship (T.B.F.I.C.P 2007, 222). The formulation of recovery incorporates important aspects of remission from substance abuse, such as abstinence from alcohol and all other drugs of abuse (T.B.F.I.C.P 2007, 222). Considering that the short-term goal of reducing substance use is rarely sufficient for the more complex long-term goal such as improved health, personal function and reduced threats to public health and safety, (McLellan et al. 2005), the strong focus on abstinence risks, however, outweights the significance of psychosocial and existential aspects of patient recovery. With the complex and often long-term problems in DD patient populations, the focus on sobriety is especially challenging when discussing recovery for this group. To start with, the dynamic interaction between patients mental problems and SUD means that days of abstinence often are not easily obtained or experienced as a positive change by these patients. Defining patient recovery by days of abstinence risks overlooking important psychosocial aspects of the patients recovery processes. More over, such definition risks that patients who perceive themselves as being in recovery, find that they are being treated as if they are not, unless they obtain total abstinence from alcohol and drugs. A last consideration that we will bring up is the question of time. It is clinical knowledge that treatment helps, as long as individuals with DD remain in treatment. However, the real problems occur when treatment is completed, e.g. when the patient is no longer supported by assertive case management with treatment competences in both psychiatry and drug use treatment. These after treatment problems support the view that DD requires a continuous treatment offer with a longitudinal perspective, emphasising continuous treatment relationships, and probably using a phase and stage specific treatment (Drake 2001; Minkoff 2001). Here a broad focus on patient recovery, rather than a focus that primarily priorities abstinence or other traditional treatment outcomes is likely to support the facilitation and development of such services (Laudet 2008). As an example, Anthony, one of the pioneers advocating the recovery orientation within mental health services and research, stated that: Recovery is a deeply NORDIC STUDIES ON ALCOHOL AND DRUGS V O L

5 personal, unique process of changing one s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness and that Recovery is often a complex, timeconsuming process (Anthony 1993, 11). Add to this that quite a few, but not many, studies on substance abusers recovery, describe how the patients experience their recovery as an individual process. For example, a study by Laudet and colleagues showed that over half of the patients (N = 289) in the study defined recovery as the process of regaining the self, lost to addiction, describing recovery as being a process rather than an end point (Laudet 2007; 2008) The challenge of requiring total abstinence from alcohol and drugs is further complicated by the fact that some of the treatment programmes targeting SUD and/ or mental illness are practised within the harm reduction paradigm rather than within an abstinence/sobriety treatment focus. Here the treatment goal is not necessarily abstinence, but includes a wider range of actions, (e.g. treatment actions within a harm reduction context may include education in better injection practices, in providing clean needles and syringes, and in immunization for hepatitis A+B) (Andersen & Järvinen 2007). Thus the considerations lead back to the issues presented in the introduction: how to measure treatment effect, which measures are important to investigate, within what time span should the improvements be assumed to take place, and what type of improvement can be expected considering the different DD patient sub groups. We will not attempt to come up with a solution, but will in the following present some reflections on a selection of current perspectives on relations between treatment effect and recovery, and the development of standardized treatment measures within substance abuse and psychiatric treatment that may be applicable to the debate within DD treatment. Measures of change after DD treatment In an article that treats the shift from retrospective follow-up monitoring to concurrent recovery monitoring (CRM) in substance abuse treatment, McLellan and colleagues suggest a broader concept of patient recovery than days of abstinence: the first step toward developing methods and systems to promote treatment effectiveness and accountability is to determine what would make treatment valuable and worthwhile (Luborsky et al. 1997; McLellan et al. 2005, 448). McLellan and colleagues suggest the use of four traditional reasonable outcome expectations in substance abuse treatment when measuring recovery: (1) reduction in substance use, (2) improvements in quality of life indicators (medical and psychiatric health), (3) improvements in social function (e.g. employment, family and social relationships), and (4) reductions in threats to public health and society (e.g. crime and spread of infectious diseases). Although the authors do not explicitly mention the importance of measuring reduction in readmissions to treatment, their focus on measuring psychosocial changes and changes in quality of life include important aspects. Moreover, the authors stress an important point, namely that most of the formulated outcome ex- 556 NORDIC STUDIES ON ALCOHOL AND DRUGS V O L

6 pectations reflect the personal goals of most patients. This is important because it shows how a definition of patient recovery is able to involve the individual patient s perspective on recovery and recovery processes. We are aware that the inclusion of patient perspectives adds to the complexity, whether it is in the formulation of patient recovery or in the development of standardized treatment measures. The recovery paradigm has thus been criticised for possibly contributing to the variability and confusion of outcome measures in substance abuse treatment (White, 2007). Likewise, a broader definition of outcome and effect measures may cause confusion within DD treatment. However, considering that the recovery focus is mainly the result of the growing consumer empowerment movement (Anonymous 1989; Deegan 1988), and that some of the present definitions of recovery are based on these patient experiences (Anthony 1993), the inclusion of patient perspectives is more in concordance with the initial aim of using recovery as a parameter for treatment outcome and patient remission. The political and administrative level a Nordic example The debate on appropriate measures of change and time span for expected patient improvements after treatment is not only the result of reflections and dialogue within and between clinical practice and research within the DD field. The discussion also mirrors different approaches and attitudes at the political and administrative level towards DD treatment and the patients treatment needs and chances for remission (Jacobson & Greenley 2001). We will illustrate how political decisions and attitudes affect the prioritising of treatment practice and expectancies on treatment outcome by referring to some of the findings from a recent Scandinavian survey of specialised DD treatment offers (NOPUS) (Sønderby et al. 2008). According to NOPUS, specialized DD treatment facilities in Norway target young patients, offering immediate enrolment in treatment with a treatment period of around 6 months. This early intervention and length of treatment is partly achievable because of close contact and collaboration between treatment facilities and the social institutions, e.g. the local employment agency. As for the patient group in Denmark, the patients are predominantly offered specialized DD treatment as a last resort and at a stage where it is considered the final and lasting treatment possibility. The differences in DD treatment interventions in Norway and Denmark indicate that the DD policy and administration in these countries involve divergent underlying assumptions about the patients course of illness and chances for recovery. Firstly, it implies different expectations and hopes regarding patient recovery. Secondly, it illustrates different assumptions on whether the patients need and require special targeted professional support in order to obtain life style improvements. The fact that many Danish DD treatment offers often involve low-demand treatment programmes, that is, where reduction in substance use is not expected or called for, can be interpreted as an expression of lacking expectations of patient recovery. Conversely, the early and focused intervention in Norway signals a belief in the NORDIC STUDIES ON ALCOHOL AND DRUGS V O L

7 individual patients chance for obtaining some degree of recovery, and that recovery is not expected to take place as a solely individual endeavour. It is paradoxical that both approaches hold self-fulfilling prophecies: as long as DD treatment interventions in Denmark take place at a later stage in the patients course of illness, making few demands on the patients as such, it is likely that patients problems remain massive, and that recovery remains a rare occurrence. Likewise, the prioritising of an early intervention, both focusing on broad measures of treatment effects and anticipating that because the patients complex problems are likely to increase over time, the patients need professional support at an early stage, is more likely to support patient recovery and limit problem growth. The example from Norway and Denmark exemplifies how a formulation of patient recovery within treatment not only involves different assumptions and definitions about treatment effect and recovery, but also results in different treatment interventions. Also the example illustrates that a clarification of standardized DD treatment outcome and effect measures is partly dependant on, and therefore must take place in dialogue with the political and administrative system which can be a challenge in itself. Treatment outcome and effect vs. recovery where do we go from here? There is no doubt that commonly accepted and operationally defined measures of treatment outcome and effect have the potential for leading to improvements within DD treatment service. In this commentary we would like to highlight the importance of acknowledging that the dynamics in patient recovery processes pose a challenge to a too narrow definition of treatment measures. The dynamic interplay between the different patient problems, including the variations found within the patient population as such, means that the patients recovery may happen at different times and within different life areas. Does this rule out the idea of developing a unified formulation of DD treatment measures? We don t think so. In an article on dilemmas within the harm reduction approach Jourdan writes Once and for all to clear the concept of harm reduction of vagueness by ways of a general definitory fix is not really what is called for. Instead we should perhaps see harm reduction as a rich and vague concept a big tent so to speak in which a lot of different things meet, and interesting problems and opportunities arise (Jourdan 2009, 4). Likewise, we propose that the current variations in treatment measures within DD treatment do not call for a fix. Rather it calls for a debate on the problems and possibilities when treating DD patients and on how to measure theme. Taking this stance, we hope that the variations in attitude and definitions of patient recovery could play a role in the continuous development and upgrading of specially targeted DD treatment interventions and in the prioritising of research within this field. Many intervention studies within substance abuse and psychiatric treatment have in fact measured elements of recovery, due to the fact that there is no single measure of recovery but many different measures that estimate various aspects of it. There is a connection between political 558 NORDIC STUDIES ON ALCOHOL AND DRUGS V O L

8 and administrative policies and attitudes and clinical practice in the DD field. Here data based on assessments of broad treatment measures during and after treatment may be pivotal for priorities and constructive and realistic decisions concerning DD treatment offers. Finally, treatment measures that include patient perspectives both signal respect for the patients undergoing treatment, acknowledging that patient improvement in quality of life to a large extent is an individual and subjective experience and evaluation. Here qualitative research investigating the patients firsthand impression of their course of illness, treatment needs and general support may be a valuable tool in defining more broad treatment measures. Birgitte Thylstrup, psychologist, Ph.D Centre for Alcohol and Drug Research Artillerivej 90, 2. floor 2300 Copenhagen S bt@vrf.au.dk Katrine Schepelern Johansen, anthropologist Institut for Antropologi, CSS Østre Farigmagsgade 5, opgang E 1353 Copenhagen K katrine.s.johansen@anthro.ku.dk Lotte Sønderby, psychologist Team for Misbrugspsykiatri Skovagervej Risskov lottsoen@rm.dk REFERENCES Andersen, D. & Järvinen, M. (2007): Harm reduction ideals and paradoxes. Nordic Studies on Alcohol and Drugs 24: Anonymous (1989): How I ve managed chronic mental illness. Schizophr Bullentin 15: Anthony, W. A. (1993): Recovery from mental illness: the guiding vision of the mental health service systems in the 1990s. Psychosocial Rehabilitation Journal 16 (4): Barrowclough, C.& Haddock, G. & Tarrier, N. & Lewis, S. W. & Moring, J. & O Brien, R. & Schofield, N. & McGovern, J. (2001): Randomized controlled trial of motivational interviewing, cognitive behavior therapy, and family intervention for patients with comorbid schizophrenia and substance use disorders. American Journal of Psychiatry 158 (10): Cleary, M. & Hunt, G. E. & Matheson, S. & Siegfried, N. & Walter, G. (2008): Psychosocial Treatment Programs for People with both Severe Mental Illness and Substance Misuse. Schizophrenia Bulletin 34 (2): Deegan, P. (1988): Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal 11 (4): Drake, R. E. & Essock, S.M. & Shaner, A. & Carey, K.B. & Minkoff, K. & Kola, L. (2001): Implementing Dual Diagnosis Services for Clients with Severe Mental Disorder. Psychiatric Services 52: Drake, R. E. & Mercer-McFadden, C. & Mueser, K. T. & McHugo, G. J. & Bond, G. R. (1998): Treatment of substance abuse in patients with severe mental illness: A review of recent research. Schizophrenia Bulletin, 24(4): Drake, R. E. & Mueser, K. T. (2000): Psychosocial Approaches to Dual Diagnosis. Schizophrenia Bulletin 26 (1): Eplov, L. F. & Kistrup, K. R. & Lajer, I. M. K. & Obel, D. & Poulsen, H. D. & Svendsen, A. B. (2005): Recovery og rehabilitering i psykiatrien. Ugeskrift for læger 167 (11): General Surgeon (1999): Mental health: A report of the surgeon general. In: H. a. H. Services (Ed.). Bethesda, MD Gregg, L. & Barrowclough, C. & Haddock, G. NORDIC STUDIES ON ALCOHOL AND DRUGS V O L

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