Elsevier

Schizophrenia Research

Volume 188, October 2017, Pages 172-177
Schizophrenia Research

Are current labeling terms suitable for people who are at risk of psychosis?

https://doi.org/10.1016/j.schres.2017.01.027Get rights and content

Abstract

Inclusion of ‘attenuated psychosis syndrome (APS)’ in the DSM-5 has been hotly debated because of the concern about stigmatising young patients with a ‘psychosis risk’ label. This study aimed to investigate whether current labeling terms such as ‘at risk mental state’, ‘ultra-high risk’ (UHR) and ‘APS’ are suitable for people who are at risk of psychosis. This study included 105 subjects (55 patients aged 15–25 years who used an early interventional service to prevent psychosis and 50 professionals who worked with them). A questionnaire regarding their opinions about the stigma associated with the above labels and the Mental Health Consumers' Experience of Stigma scale were administered. The patients were less likely than the professionals to agree that there was stigma associated with the terms ‘UHR’ and ‘APS’. Significantly more patients with a family history of psychosis and those who had transitioned to psychosis agreed that there was stigma associated with the term ‘UHR’ and/or that this term should be changed. Patients who agreed with the negative attitude items for the three labeling terms and the need to change the terms ‘UHR’ and ‘schizophrenia’ showed significantly higher scores on the Stigma scale. In conclusion, patients at risk of psychosis may experience less stigma related to labels than expected by professionals, suggesting that mental health professionals may not be able to help patients unless they listen to their views on nosological and treatment issues rather than make assumptions. Previous stigmatising experiences may have strengthened the stigma attached to this label.

Introduction

Since the mid-1990s, the retrospective concept of the ‘prodrome’ was changed to a prospective one to effectively identify and prevent people who may be at risk of developing psychotic disorder. Prodrome was replaced to newly developed term, ‘at risk mental state’ (ARMS) or ‘ultra-high risk’ (UHR) for psychosis (Yung et al., 1996). The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), includes ‘attenuated psychosis syndrome’ (APS) as a new diagnosis in Section 3, which is the section for conditions requiring further research (American Psychiatric Association, 2013). The proposal to include this condition as a possible diagnosis in DSM-5 prompted much debate in the build up to the publication of DSM-5. While some argued that the introduction of this diagnosis could help promote early detection and treatment, others were concerned about potential stigma generated by its inclusion (Brummitt and Addington, 2013, Mittal et al., 2015, Shrivastava et al., 2011, Tsuang et al., 2013, Yang et al., 2010).

Patients with established psychotic disorder have high levels of self-perceived stigma, which frequently prevents successful treatment (Link et al., 2001, Yoo et al., 2015). This negative stigmatising effect of mental health has been observed even in the pre-psychotic phase. Stigma-related stress in youth at risk of psychosis has been associated with reduced well-being and increased anxiety, depression, suicidality and the risk of transitioning to psychotic disorder (Rüsch et al., 2014, Rüsch et al., 2015, Xu et al., 2016, Yang et al., 2015). Self-perceived stigma in patients in the prodromal phase may develop due to various reasons, including psychosis-like symptoms, awareness of the illness and labeling (Yang et al., 2015). In particular, labeling terms themselves may lead to direct negative stigmatization by activating a ‘set of pre-existing conceptions’ concerning mental illness (Kim et al., 2012, Link et al., 1987, Link et al., 1989, Yang et al., 2010).

A diagnosis can be a powerful tool to share information with professionals, but providing a label to patients carries the potential for stigma, and information about a disorder can occasionally be “too much for the patient” (Mittal et al., 2015). The term ‘schizophrenia’ has been changed in some Asian countries to reduce the prejudice and stigma related to this label (Chiu et al., 2010, Kim et al., 2012, Lee et al., 2013, Sartorius et al., 2014, Sato, 2006). In addition, a new term to replace ‘schizophrenia’ has also been proposed in Western countries for improving scientific validity and possibly being less stigmatising (Kapur, 2003, Tranulis et al., 2013, van Os, 2009). Consistent with this, it seems important to consider the way those terms are used in individuals at high risk of psychosis in order to minimize potential stigma. Following the introduction of ‘APS’ in the DSM-5 research section, investigation is needed to evaluate the possible harmful effects and benefits that might be associated with the APS diagnosis. This should include assessing any perceived stigma associated with this new diagnosis (Yung et al., 2012). However, only a few studies have investigated the perspectives of people at high risk for psychosis regarding their condition (Welsh and Tiffin, 2012). Furthermore, no study has directly investigated and compared the opinions of patients and mental health professionals regarding the proposed APS diagnosis and other related terms (Corcoran, 2016). This study aimed to investigate whether current labeling terms are suitable for people who are at risk of psychosis by surveying the opinions of patients and professionals regarding the potential stigma associated with the labels.

Section snippets

Participants

This study included young people who were enrolled in an early intervention service to prevent or treat the occurrence of a first psychotic episode and the professionals who worked with them. The patients were enrolled at the Personal Assessment and Crisis Evaluation (PACE) clinic of Orygen Youth Health in Melbourne, Australia. The PACE clinic provides clinical services and care for young people at high risk of schizophrenia and other psychotic disorders. Professionals among the mental health

Participants

A total of 105 subjects (50 patients and 55 professionals) participated in the study. Mean (standard deviation [SD]) ages of the patients and professionals were 19.1(3.1) and 36.6(9.8) years, respectively. Females comprised 60.0% of the patients and 63.6% of the professionals. Mean age of the patients at first contact with a mental health service was 16.1(4.0) years, and length of treatment at the PACE clinic was 9.0(6.2) months. Eleven (22.0%) patients had transitioned to psychosis from UHR

Discussion

Inclusion of the term ‘APS’ in the DSM-5 has been hotly debated (Carpenter and van Os, 2011, Shrivastava et al., 2011, Woods and Mcglashan, 2011, Yung et al., 2010). One of the key reasons for not including the ‘APS’ was the concern about stigmatising young patients with a “psychosis risk” label (Corcoran, 2016, Corcoran et al., 2010, Lee et al., 2015, Mittal et al., 2015). Based on concerns about the stigma and unnecessary exposure to antipsychotics, APS was classified in the DSM-5′s appendix

Contributors

S.W.K. and B.N. had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis; S.W.K., A.P., H.H., P.M., and B.N. contributed to the conception and design of the study; A.P., F.M., and B.M. contributed to the data collection; J.M.K. and P.A. helped in the analysis and interpretation of data; S.W.K. wrote the first draft of the manuscript; A.P. and B.N. edited the draft; All authors critically reviewed the draft and have

Conflicts of interests

The authors report no financial or personal relationships, interests, and affiliations relevant to the subject matter of the manuscript.

Role of funding source

The funding sources had no further role in study design; in the analysis and interpretation of data; and in the writing of the manuscript.

Acknowledgements

This study was supported by a grant of the Korean Mental Health Technology R&D Project, Ministry of Health & Welfare, Republic of Korea (HM15C114).

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