Changing the Name of Schizophrenia: Patient Perspectives and Implications for DSM-V

Abstract

IntroductionThe diagnosis of schizophrenia is increasingly contested by researchers, clinicians, patients and family members. Preeminent researchers proposed its replacement with the salience syndrome concept, arguing for increased validity and less stigmatizing potential. This is the first study exploring the effects on stigma of this nosological proposal.MethodsTwo studies were conducted: one with 161 undergraduate students regarding their stigmatizing attitudes linked to the label of schizophrenia or salience syndrome, the other involved in-depth qualitative interviews with 19 participants treated in a first episode psychosis program. The interviews explored the subjective validity, acceptability and effects on stigma of a diagnosis of schizophrenia or salience syndrome.ResultsOverall, no significant differences were found between labels in study 1. For study 2, the majority of participants preferred a diagnosis of salience syndrome, considering it less stigmatizing mostly because of its novelty and the concealing potential of the new diagnostic entity, though many found it hard to relate to and somewhat difficult to understand.DiscussionOur results suggest that the label change does not impact the stigmatizing potential for individuals who are not familiar with mental illness - they appear to base their attitudes on descriptions rather than the label alone. For those suffering from mental illness, a name change for schizophrenia to “salience syndrome” might offer only a temporary relief from stigma. Claims of de-stigmatizing effects should be grounded in sound scientific models of stigma and ideally in empirical data.

Associations between renaming schizophrenia and stigma‐related outcomes: A systematic review

“…Seventeen studies assessed attitude and knowledge outcomes, including one article that reported the findings of two studies . Four Japanese studies addressed disclosures of a diagnosis/diagnosis announcement in oral or written form, and three studies examined media coverage .…”

“…Approximately two‐thirds of the studies were conducted in Japan . Four and five studies were conducted in other Asian and Western counties, respectively. Only one study had a prospective longitudinal design …”

Telling the patients about diagnosis and outcome of schizophrenia: what, when and how?

“…In view of diagnostic heterogeneity in first‐episode psychoses and diagnostic instability over time, it is understandable that most early intervention services prefer the term psychosis instead of schizophrenia. Indeed, the Japanese Society of Psychiatry and Neurology renamed schizophrenia to ‘Togo Shitcho Sho’, which literally means integration disorder . It is not clear, though, how these alternative diagnostic entities are communicated with service users and how these are accepted.…”

“…Three basic questions to be addressed in sharing the information about the diagnosis and outcome of schizophrenia are what, how and when to tell. The most perplexing question is what to tell, when even the term ‘schizophrenia’ is not universally acceptable . This needs to be informed by patients' views, expectations and experience.…”

Renaming schizophrenia to reduce stigma: comparison with the case of bipolar disorder

“…6 However, there is little empirical evidence regarding renaming; whereas one study exploring the effect of the Japanese name change reported a decrease in endorsement of the stereotype 'criminal' among college students, 5 two studies using small college student samples, in China and Canada, found no difference between different terms presented for schizophrenia. 7,8 There have been no general population studies exploring the effect of different labels for schizophrenia on public beliefs and attitudes, and no studies exploring the effect of renaming on all components of public stigma (i.e. cognitive, emotional and behavioural reactions).…”