Potential stigma associated with inclusion of the psychosis risk syndrome in the DSM-V: An empirical question

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Abstract

While the “clinical high-risk state” for psychosis has demonstrated good reliability and fair predictive validity for psychotic disorders, over 50% of identified subjects do not progress to psychosis. Despite the benefits that early detection and treatment might offer, debate concerning the official inclusion of a “psychosis risk syndrome” in the upcoming DSM-V frequently involves concerns about the impact of stigma on patients, families and institutions. We add to this debate by providing an analysis of the theoretical and empirical stigma literature to evaluate the potential effects of stigma associated with the psychosis risk syndrome. Theorists' conceptualizations of how stigma exerts its negative effects emphasize internalization of pejorative societal stereotypes (‘self-stigma’), negative emotional reactions, harmful behavioral coping strategies, and structural discrimination as key mechanisms. Studies assessing the comparative effects of symptomatic behavior when compared with a psychiatric diagnosis label in predicting rejecting social attitudes indicate that treating symptomatic behaviors is likely to diminish overall stigma. However, any publically held ‘preexisting conceptions’ about what a psychosis risk syndrome means are still likely to exert negative effects. Additionally, particular features of this syndrome—that it occurs during adolescence when identity formation may be in flux— may also shape manifestations of stigma. Utilizing other well-established ‘at-risk’ conditions (e.g., genetic susceptibility) to model potential discrimination for this syndrome, we suggest that future discrimination is likely to occur in insurance and family domains. We conclude by proposing stigma measurement strategies, including recommending that field trials prior to DSM-V adopt systematic measures to assess any stigma that this psychosis risk syndrome might confer via future community use.

Introduction

Schizophrenia, a chronic and severe mental illness characterized by the presence of hallucinations, delusions, and potential lifelong impairment, has been identified as the 9th leading cause of disability worldwide (WHO, 2008). Because the onset of schizophrenia is preceded in 80% of cases by “prodromal” features (e.g., subclinical psychotic symptoms, mood symptoms, and social withdrawal; Hafner et al., 1998) the development of a diagnosis to accurately detect a “clinical high-risk state” for psychosis has great implications in forestalling the morbidity and reducing the public health burden associated with this and other psychotic disorders. The psychosis risk syndrome has been operationalized as subthreshold psychotic symptoms, primarily in attenuated form (Miller et al., 2003). Use of this classification for identification and treatment of clinical high risk patients (consisting of antipsychotic medication and cognitive-behavioral therapy, McGorry et al., 2002, or antipsychotic medication only; McGlashan et al., 2004) in initial randomized clinical trials has indicated the possibility of reducing prevalence of psychotic disorders by delaying or preventing onset of psychosis among those treated.

Despite the potential benefits such a diagnosis might offer, a debate exists concerning the official inclusion of a psychosis risk syndrome in the upcoming Diagnostic and Statistical Manual for Mental Disorders (DSM-V) to be published in 2012. While an NIH-funded consortium of eight prodromal study sites has provided evidence as to the reliability (Kappas > .80 at each site) and fair predictive validity of the psychosis risk syndrome (approximately 35% of patients develop psychosis within 2.5 years. Cannon et al, 2008 to support inclusion of this syndrome in DSM-V, over 50% of identified subjects may not progress to psychosis. Because of the syndrome's uncertain long-term course, and because diagnosis will typically be made with young adults who are in the early stages of their identity development, concerns exist as to the potential impact of stigma on patients, families, and institutions (Corcoran et al., 2005, McGorry et al., 2001). Further, given that community cohort studies report the lifetime prevalence of having at least one psychotic symptom to be 10–20% among respondents (Yung et al., 2006), any stigma attached to a “psychosis risk” diagnosis may potentially affect a great number of people.

Despite the possibility that this syndrome may be incorporated into DSM-V, no studies to date have systematically examined how any potential stigma induced by the label of psychosis risk might affect identified patients, nor are there any reviews of the existent theoretical and empirical literature on stigma which may inform this empirical question. Prior conceptual work has outlined the effects that stigma might have upon individuals identified with this syndrome by drawing upon ethical perspectives and research on other ‘at-risk’ states (Corcoran et al., 2005). We seek to add to this debate by reviewing the literature on stigma to better evaluate its potential effects on individuals who are labeled as having the psychosis risk syndrome and to recommend specific methodologies to study this construct. Rather than offering a systematic review of this literature, we provide an analysis from the perspective of specialists in stigma theory and measurement. We first ascertain what domains within the multidimensional construct of stigma are most relevant and identify the possible mechanisms by which stigma might impact individuals labeled as ‘at-risk’ for psychosis. Next, we clarify the potential relative contributions of stigma from symptomatic behaviors versus that received from labeling. We further examine how issues particular to the psychosis risk syndrome—i.e., its occurrence at a relatively early developmental stage, and its status as a ‘high-risk’ state that might elicit common forms of discrimination seen with other well-established ‘at-risk’ conditions (e.g., genetic susceptibility)—may further inform our understanding of these possible stigma mechanisms. We conclude by recommending strategies to measure any possible risk of stigma that the official creation of a psychosis risk diagnosis might confer.

Section snippets

Defining stigma

Conceptualizations of stigma have varied greatly from frameworks emphasizing internal psychological processes to more complex formulations incorporating evolutionary forces, institutional policies, and sociopolitical structures (for reviews, see Yang et al., 2008a, Yang et al., 2008b, Yang et al., 2007). We focus our discussion on the stigma definitions and processes that most directly illustrate how an official psychosis risk designation might impact identified patients. In his classic

The effects of labeling versus symptoms in stigma formation

While the harmful effects of mental illness labeling are supported by considerable empirical evidence, critics have offered counterpoints. First, psychiatric patients have reported relief that a label can explain symptoms and validate their experiences (Hayne, 2003). From a public health perspective, early identification and labeling might benefit patients ‘at-risk’ for psychosis by eliciting helping responses and resulting in swift, targeted treatment (McGorry et al., 2002), effectively

Potential stigma associated with the label of the psychosis risk syndrome

These potential stigma dimensions and mechanisms may be further shaped by particular features of the psychosis risk syndrome—that it occurs during adolescence when identity formation may be in flux and that it is a ‘high-risk’ condition that might share characteristics with other ‘at-risk’ disease states. We review these issues—and their possible impacts on potential stigma—below.

Recommendations for measurement and future directions

We have provided a conceptual integration of the stigma literature in an attempt to learn how potential stigma of a psychosis risk syndrome might affect individuals, and how this syndrome's particular characteristics may shape any possible manifestation of stigma. We highlight key forms of ‘internalized stigma’, emotional reactions, and harmful coping mechanisms as a consequence of labeling processes that interfere with adolescent identity formation and forms of ‘structural’ and familial

Role of funding source

The preparation of this manuscript was supported in part by the National Institutes of Mental Health grant K01 MH73034-01 which has been awarded to Dr. Yang and NIMH training grant 5-T32-MH-13043 which supports Ms. Wonpat-Borja. Funding for this study was provided by the Irving Institute for Clinical and Translational Research at Columbia University, the Lieber Center for Schizophrenia Research, and The PANSS Institute. None of these funding sources had any further role in the writing of the

Contributors

Dr. Yang takes responsibility for the primary conceptualization of this paper and its contents, wrote initial drafts and incorporated all co-authors' edits into the final version. Ms. Wonpat-Borja managed the literature searches, aided in conceptualization of the paper, and provided editorial comments to initial drafts. Dr. Opler and Dr. Corcoran each aided in conceptualization of the paper, and provided editorial comments to drafts. All authors contributed to and have approved the final

Conflict of interest

All authors declare that they have no conflicts of interest.

Acknowledgements

The preparation of this manuscript was supported in part by NIMH grant K01-MH73034-01 which has been awarded to Dr. Yang, and NIMH grant K23-MH066279-01A2 awarded to Dr. Corcoran.

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