Introduction

More than 100 years after its introduction [1], the diagnosis of schizophrenia continues to create controversies and intense debates (see for example the British Medical Journal editorials [2], [3] and the ensuing lively debate [4]). In resonance with scientific critiques of the validity of this nosographic concept, it is well established that the label of “schizophrenia” can be profoundly invalidating and stigmatizing. Stigma can be understood as a process with six dimensions: labeling, stereotyping, separation, emotional reaction, discrimination and power differential [5]. Consequently, several authors have proposed alternative diagnostic entities (e.g. the “deconstructing psychosis” conference [6], in preparation of the new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM) [7]). Patient and family groups suggested renaming the condition and proposed a plethora of alternative labels [8]. However, the term schizophrenia remains the principal diagnostic category of the International Classification of Diseases and Diagnostic Statistical Manual of mental disorders and it is widely used in clinical, research and popular contexts, with the notable exception of Japan. Indeed, the Japanese Society of Psychiatry and Neurology changed in 2002 the diagnostic label of “Seishin Bunretsu Byo” (“mind-split-disease”, equivalent to schizophrenia) for “Togo Shitcho Sho” (integration disorder). Increased acceptability by psychiatrists and higher rates of informing the patients and families were reported after the introduction of the new term [9]. Using an Implicit Attitudinal Test, Takahashi and colleagues explored the automatic associations between the old and new schizophrenia labels and negative stereotypes (in this case, violence). In a sample of 68 young Japanese students, they observed a weaker association with the term “criminal” for the new diagnostic term [10], suggesting that the new diagnostic term “holds promise for tempering the negative bias toward the disorder in Japan”. In another empirical study, 241 British medical students rated their attitudes to five alternative labels (sensitivity-, drug-, anxiety-, traumatic psychoses and schizophrenia). These hypothetical changes in terminologies also showed fewer explicit negative attitudes in comparison to schizophrenia [11]. However, these reports of attitudinal changes are prone to several biases, in particular social desirability [5]. A wealth of sociological research showed convincingly that terminology changes do not influence durably stigma and its manifestations (i.e. discrimination), with most researchers proposing a multi-modal approach, such as the Protest-Educate-Contact model [12]. Indeed, the theoretical model of stigma predicts only a limited link between attitudinal changes and the core dimensions of stigma and discrimination (i.e. the attitudes/stereotype is only one of the six dimensions).

Not only is there a paucity of studies of stigma and label changes of schizophrenia, but the perspective of the principal stakeholders, the patients themselves, is essentially absent from these scientific inquiries.

In this context, several proposals to change the name of schizophrenia have been made. Shitij Kapur [13], [14] and Jim van Os [15] proposed to replace the psychosis spectrum disorders (including schizophrenia) with “(abnormal) salience syndrome” in DSM-V. This was arguably the most popular alternative for schizophrenia among the scientific community. Salience refers to how internal and external stimuli are consciously experienced and how, unwilled or overinclusive attention to some stimuli can become perplexing and foster a search for explanations which are later recognized as delusional [14]. The abnormal salience is postulated to be the core cognitive problem experienced by individuals suffering from psychosis. The authors suggest that salience syndrome has better scientific validity, better clinical validity (in the sense that it is closer to the lived experience of patients) and would be less stigmatizing than the label of schizophrenia. While these hypotheses sound convincing, they are in need of empirical validation. In order to explore these questions, we wished to investigate both the attitudinal impact of the label in an often-studied convenience sample (i.e. university students), as well as to explore scientifically whether 1) the “salience syndrome” is perceived as useful by the patients and 2) in which way it might influence expected stigma, including self-stigma. Specifically, we wished to study these last questions with an early psychosis sample. Early psychosis is a period of intense negotiation of meaning for patients, which includes reflecting about diagnoses. Because most individuals treated for early psychosis have not yet received or accepted a diagnosis of schizophrenia, they might be less likely to be biased or to show rigidity in their evaluations of new nosological entities. They are also likely to have fresh memories of their experiences of psychosis and to be interested to reflect about the most appropriate diagnostic label.

Methods

The study was conducted in two parts. Both studies were approved by the University of Montreal’s Institutional Review Board, and the Hôpital Louis-H. Lafontaine’s Ethic’s and Scientific review boards, and all participants gave written informed consent to participate in the study.

Results

Discussion

Contrary to results from Japan [9], in the undergraduate population of study 1, the label used did not elicit different attitudes regarding people with schizophrenia or salience syndrome. As seen in other studies, the students held stigmatizing attitudes regarding social distance in work and social situations. The attitudes appeared based on the vignette and description (prescription of antipsychotic medication might have influenced their answers), rather than the label itself. Only for psychology students did we find a slightly more positive attitude when presented with the salience syndrome compared to biology students, suggesting that prior (negative) knowledge of schizophrenia might have influenced their answers.

In discussing the name change of schizophrenia with individuals in early phases of treatment, the reasons to prefer one name over the other was mostly related to the capacity of the label to avoid societal stigma, either by completely rejecting any diagnosis, or by being able to conceal the mental illness under an obscure term. The “obscurity” of the salience syndrome was thus not a matter of concern, but a highly prized quality for some.

Because terms tend to become less obscure with time, one participant proposed even a system where new names for schizophrenia would be continuously invented. While scientists and clinicians consider negatively the lack of clarity, it was a positive, yet ephemeral, characteristic of the new label from the participant’s perspectives. Secrecy is the main lay strategy for avoiding social stigma [18], thus the positive appraisal of the obscurity of a new label by the participants in the early psychosis clinic. The negative stereotypes, separation, power imbalance and discrimination do not wane simply by changing a label and it is probable that they infuse back into the new labels as society gets to understand their link with the previous labels.

Being able to share one’s symptoms and experiences and to be understood without being rejected by others was another reason to prefer a specific label. The universal qualities of the salience processes, while not clearly resonating with the subjective experience of the participants, were considered as potentially promoting empathy and tolerance from others in society.

Participants tended to reason not in abstract terms (such as diagnostic categories), but in a more concrete, pragmatic and direct manner. They focused more on symptoms, interpersonal implications and prognostic values of each diagnosis. Although the sample size is too small to extrapolate, there was a trend toward individuals preferring salience syndrome over schizophrenia as having less self-stigmatizing attitudes of withdrawal. Future studies with larger samples are warranted in order to clarify the role of labels on self-stigmatizing attitudes.

Our results somewhat differ from Kingdon et al’s exploratory study, where multiple terms were proposed as an alternative to schizophrenia [19], affirming that « it may be that stigmatisation arises from the nature of the illness as opposed to its terminology but the current term is semantically inexact–essentially meaningless–and increasingly associated inappropriately with violence and deterioration. » They explored the attitudes of 27 patients, care coordinators and consultant psychiatrists to the term « schizophrenia » and to four newly proposed psychosocial alternatives (sensitivity psychosis, drug-related psychosis, traumatic psychosis, anxiety psychosis). Overall, 74% of the patients preferred one of the new terms over schizophrenia and most of them held positive or neutral attitudes towards the new terms. Interestingly, while care coordinators shared patients’ preference for new terms, psychiatrists were more negative, fearing the imprecision of the descriptions or the mixing of nosological categories (anxiety and psychosis). There was little agreement between patients, psychiatrists and care coordinators regarding the best term for each patient.

Our study has some limitations. Study 1 only included undergraduate students, a fairly educated sample, and might not represent the general population. Study 2 was conducted with a fairly small convenience sample of individuals, who were all quite verbal and all mentioned being supported by their families, which is not always the case in this clinical population. Inter-rater consensus of qualitative scores was not obtained, although the interviewers confirmed the qualitative analyses. Only one alternative to the term schizophrenia was proposed; perhaps more choices would have generated different results. And, of course, this study did not explore the scientific or clinical validity of these nosological entities.

In conclusion, our results do not support Kapur (2003) and van Os (2009)’s hypotheses regarding 1) utility of the salience syndrome for explaining the subjective experiences of patients and 2) sustained de-stigmatizing effects. Most participants preferred the salience syndrome label because of its novelty and “obscurity” as this would help them avoid stigma. However, in the event of a broader adoption, many believed that the “salience syndrome” would likely become stigmatizing. For those suffering from mental illness, a name change for schizophrenia to “salience syndrome” might thus offer only a temporary relief from stigma. This highlights the importance of using sound scientific models of stigma and empirical validations when claiming de-stigmatizing effects of an intervention, such as changing the name of schizophrenia. Similar studies could inform the debates over nosological shifts, such as those observed during the DSM-V preparation.

Supporting Information