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Are current labeling terms suitable for people who are at risk of psychosis?
SCHRES-07132; No of Pages 6 Schizophrenia Research xxx (2017) xxx–xxx
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Are current labeling terms suitable for people who are at risk of psychosis? Sung-Wan Kim a, Andrea Polari b, Fritha Melville b, Bridget Moller b, Jae-Min Kim a, Paul Amminger b,c, Helen Herrman b,c, Patrick McGorry b,c, Barnaby Nelson b,c,⁎ a b c
Department of Psychiatry, Chonnam National University Medical School, Gwangju, Republic of Korea Orygen Youth Health and Centre for Youth Mental Health, The University of Melbourne, Melbourne, Australia Orygen, The National Centre of Excellence in Youth Mental Health, The University of Melbourne, Melbourne, Australia
a r t i c l e
i n f o
Article history: Received 30 December 2016 Received in revised form 14 January 2017 Accepted 14 January 2017 Available online xxxx Keywords: Stigma Attenuated psychosis syndrome High risk Schizophrenia DSM-5 Labeling term
a b s t r a c t 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. © 2017 Elsevier B.V. All rights reserved.
1. 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
⁎ Corresponding author at: Orygen, The National Centre of Excellence in Youth Mental Health, 35 Poplar Rd (Locked Bag 10), Parkville, Victoria 3052, Australia. E-mail address: [email protected] (B. Nelson).
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 selfperceived 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, 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, 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
http://dx.doi.org/10.1016/j.schres.2017.01.027 0920-9964/© 2017 Elsevier B.V. All rights reserved.
Please cite this article as: Kim, S.-W., et al., Are current labeling terms suitable for people who are at risk of psychosis?, Schizophr. Res. (2017), http://dx.doi.org/10.1016/j.schres.2017.01.027
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S.-W. Kim et al. / Schizophrenia Research xxx (2017) xxx–xxx
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. 2. Methods 2.1. 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 practitioners employed at Orygen Youth Health who had worked with UHR patients were enrolled. The patients' inclusion criteria were as follows: (a) fulfilled one or more of the three operationally defined UHR criteria (Nelson et al., 2013) as assessed by the Comprehensive Assessment of At-Risk Mental States (Yung et al., 2005); (b) aged 15–25 years and (c) completed three or more clinical sessions with a mental health practitioner at the PACE clinic. A written information sheet for this study was provided to eligible participants and written consent was obtained from all participants. This study was approved by the Melbourne Health Human Research Ethics Committee. 2.2. Questionnaire and data A questionnaire developed by the researchers regarding the labels ‘ARMS’, ‘UHR’ and ‘APS’ was administered to the patients and professionals. An initial trial was performed with selected patients and professionals to determine whether the questionnaire was understandable. They were asked whether they understood all the questions and what could be clarified for future use. After revising the questionnaire based on this feedback, we initiated the data-collection process. It was composed of a total of 12 items with the same four questions for each three labeling terms as follows: (a) There is stigma (e.g., prejudice and discrimination from others) as a result of this term; (b) People are afraid and ashamed as a result of receiving this label; (c) The use of this term is helpful in preventing the development of psychosis; and (d) This term should be renamed to a more neutral or generic term. Subjects were asked how strongly they agreed or disagreed with each statement on a 5-point Likert scale (strongly agree to strongly disagree). Brief introduction for the labeling terms were provided before the items as follows: the term ‘ARMS’/‘UHR’ is used to identify young people who may be at increased risk of developing psychosis; or ‘APS’ has recently been considered as a new diagnosis for DSM-5 based on the ‘UHR’
criteria. Additionally, the participants were also asked their opinion about the need to rename the official diagnosis of ‘schizophrenia’. The Mental Health Consumers' Experience of Stigma scale was used to assess patients' experiences of stigma (Wahl, 1999). This stigma scale, which is composed of two subscales (9 stigma-related items and 12 discrimination-related items), measures patients' experiences with stigma and discrimination using a five-point Likert scale (“never” to “very often”). We administered the nine-item stigma subscale to assess the general level of perceived stigma. A higher total score indicated a higher level of perceived stigma. Data on the current psychiatric diagnoses, age, length of treatment at the PACE clinic and family history of psychiatric illness were collected from medical records. Professionals were asked when they were likely to use the term ‘psychosis’ with young people during different time points in the pre-psychotic and transitioned phases. They were also asked which term they used most often when speaking to youths at risk of psychosis. Data on sociodemographic characteristics and occupational classification, were also collected from the professionals. 2.3. Statistical analysis The answers ‘agree’ and ‘strongly agree’ regarding opinions about the labels were classified as agreement with the item. The frequency of agreement was compared between the patients and professionals using the chi-square test. The analysis was conducted separately in the patient and professional groups to compare agreement according to the sociodemographic and clinical characteristics using chi-square test for categorical variables and independent t-test for continuous variables. The associations of scores on the Stigma scale with opinions about the labels and the sociodemographic and clinical characteristics were analysed with independent t-test or analysis of variance for categorical variables or Pearson's correlation analysis for continuous variables. All statistical tests were two-tailed, with a significance level (pvalue) of 0.05. SPSS ver. 21.0 for Windows software was used for the statistical analysis. 3. Results 3.1. 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 while receiving mental health care at the PACE clinic. Twelve (24.0%) patients had a family history of psychosis, 21(42.0%) had a family history of another psychiatric illness, such as depression or substance abuse, and 17(34.0%) had no family history of a psychiatric illness. Mean (SD) employment duration of the professionals at Orygen Youth Health was 9.0(6.2) years. The occupational classification of the professionals was as follows: 18(32.7%) nurses, 16(29.1%) psychologists, 10(18.2%) psychiatrists, 3(5.5%) social workers, 4(7.3%) occupational therapists and 4(7.3%) others. 3.2. Opinions about the labeling terms Table 1 shows the responses of the patients and professionals to the questionnaire on opinions about the labeling terms. The patients were significantly less likely to agree that there is stigma associated with the terms ‘UHR’ and ‘APS’ compared with the mental health professionals. Patients tended to be less likely to agree than professionals that people are afraid and ashamed as a result of receiving the label ‘APS’, a difference approaching statistical significance (p = 0.073). In
Please cite this article as: Kim, S.-W., et al., Are current labeling terms suitable for people who are at risk of psychosis?, Schizophr. Res. (2017), http://dx.doi.org/10.1016/j.schres.2017.01.027
S.-W. Kim et al. / Schizophrenia Research xxx (2017) xxx–xxx
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Table 1 Responses of the patients and professionals to the questionnaire regarding terms for labeling.
At risk mental state (a) stigma (e.g., prejudice and discrimination from others) as a result of this term (b) afraid and ashamed as a result of receiving this label (c) helpful in preventing the development of psychosis (d) should be renamed to a more neutral or generic term Ultra High Risk (a) stigma (e.g., prejudice and discrimination from others) as a result of this term (b) afraid and ashamed as a result of receiving this label (c) helpful in preventing the development of psychosis (d) should be renamed to a more neutral or generic term Attenuated Psychosis Syndrome (a) stigma (e.g., prejudice and discrimination from others) as a result of this term (b) afraid and ashamed as a result of receiving this label (c) helpful in preventing the development of psychosis (d) should be renamed to a more neutral or generic term Schizophrenia renaming is required due to prejudice and stigma
Patients (n = 50) No. (%)
Professionals (n = 55) No. (%)
p-Value
20 (40.0) 20 (40.0) 21 (42.0) 17 (34.0)
21 (38.2) 15 (27.3) 31 (56.4) 11 (20.0)
0.849 0.167 0.141 0.105
21 (42.0) 22 (44.0) 19 (38.0) 21 (42.0)
37 (67.3) 30 (54.5) 25 (45.5) 27 (49.1)
0.009 0.280 0.439 0.466
18 (36.7) 19 (38.8) 16 (32.7) 13 (26.5)
33 (60.0) 31 (56.4) 25 (45.5) 18 (32.7)
0.018 0.073 0.182 0.490
24 (49.0)
28 (50.9)
0.844
with the items of negative attitude in all three terms showed significantly higher scores of the stigma scale than those who did not agree. Scores on the Stigma scale were also significantly higher for patients who agreed that the terms ‘UHR’ and ‘schizophrenia’ should be changed. Stigma scale score was not associated with any of the sociodemographic or clinical characteristics (data not shown). The patients' opinions regarding the labeling terms were not associated with current age, age at first contact with a mental health service or gender. Mean (SD) duration of treatment at the PACE clinic was significantly shorter for patients who agreed that the terms ‘ARMS’ and ‘UHR’ are helpful for preventing psychosis than for those who did not [6.7(5.2) vs. 10.6(6.4) months, p = 0·024, and 6.4(5.0) vs. 10.5(6.4) months, p = 0·022, respectively). Treatment duration did not differ according to the responses to the other items. The responses of the professionals did not differ according to their occupational classification and gender (data not shown).
patients, the overall frequency of negative responses (stigma and shame) to the terms were about 40%, with a similar rate seen for all three terms, i.e. ‘ARMS, UHR and APS’. In comparison, professionals more frequently showed negative responses to ‘UHR’ and ‘APS’ (ranging from 54.5 to 67.3%’) than for ‘ARMS’ (27.3% to 38.2%). The frequency of patients' and professionals’ responses indicating the need to rename the term to a more neutral or generic was lower in ‘APS’ (26.5% and 32.7%, respectively) than in ‘UHR’ (42.0% and 49.1%, respectively) and in ‘schizophrenia’ (49.0% and 50.9%, respectively). Table 2 shows the comparison of the responses of patients according to the presence of a family history and transition to psychosis. Patients with a family history of psychosis or other psychiatric illness were four times more likely to agree with the items of shame as a result of receiving ‘UHR’. In addition, patients with a family history of psychosis were significantly more likely to agree with the need to rename ‘UHR’ than the other two groups. Patients who had transitioned to psychosis were also significantly more likely to agree with the items of shame as a result of receiving ‘UHR’, whereas they were significantly less likely to agree that the ‘UHR’ label helped prevent the development of psychosis. Fig. 1 shows a comparison of the Stigma scale scores according to the patients' opinions regarding the labeling terms. Patients who agreed
3.3. Use of the term in professionals Among the professionals, 52.9% used the term ‘psychosis’ at the beginning of care, 31.4% used the term during care, 7.8% used the term when a transition to psychosis occurred and 7.8% did not use the term
Table 2 Comparison of the responses of patients and professionals according to clinical characteristics. For patients
For professionals
Patients with family history of psychiatric illness
At risk mental state (a) Stigma (b) Afraid and ashamed (c) Helpful in prevention (d) Should be renamed Ultra High Risk (a) Stigma (b) Afraid and ashamed (c) Helpful in prevention (d) Should be renamed Attenuated Psychosis Syndrome (a) Stigma (b) Afraid and ashamed (c) Helpful in prevention (d) Should be renamed Schizophrenia; renaming
Psychosis (n = 12)
Others (n = 21)
None (n = 17)
5 (41.7) 6 (50.0) 3 (25.0) 5 (41.7)
8 (38.1) 8 (38.1) 11 (52.4) 7 (33.3)
7 (41.2) 6 (35.3) 7 (41.2) 5 (29.4)
7 (58.3) 7 (58.3) 3 (25.0) 9 (75.0)
8 (38.1) 12 (57.1) 9 (42.9) 8 (38.1)
5 (41.7) 6 (50.0) 2 (16.7) 4 (33.3) 8 (66.7)
7 (33.3) 8 (38.1) 10 (47.6) 4 (19.0) 10 (50.0)
p-Value
Patients converted to psychosis Yes (n = 11)
No (n = 39)
0.973 0.709 0.308 0.787
5 (45.5) 7 (63.6) 3 (27.3) 5 (45.5)
15 (38.5) 13 (33.3) 18 (46.2) 12 (30.8)
6 (35.3) 3 (17.6) 7 (41.2) 4 (23.5)
0.415 0.026 0.564 0.019
4 (36.4) 8 (72.7) 1 (9.1) 5 (45.5)
6 (37.5) 5 (31.3) 4 (25.0) 5 (31.3) 6 (35.3)
0.890 0.600 0.138 0.585 0.248
3 (27.3) 5 (45.5) 5 (45.5) 2 (18.2) 5 (45.5)
p-Value
Terms that clinicians used most often to patients
p-Value
UHR (n = 12)
ARMS (n = 25)
Others (n = 18)
0.736 0.090 0.319 0.623
3 (25.0) 3 (25.0) 10 (83.3) 0 (0.0)
8 (32.0) 4 (16.0) 14 (56.0) 7 (28.0)
10 (55.6) 8 (44.4) 7 (38.9) 4 (22.2)
0.166 0.116 0.055 0.132
17 (43.6) 14 (35.9) 18 (46.2) 16 (41.0)
0.741 0.042 0.035 1.000
7 (58.3) 5 (41.7) 11 (91.7) 2 (16.7)
17 (68.0) 15 (60.0) 8 (32.0) 17 (68.0)
13 (72.2) 10 (56.6) 6 (33.3) 8 (44.4)
0.725 0.574 0.001 0.012
15 (39.5) 14 (36.8) 11 (28.9) 11 (28.9) 19 (50.0)
0.724 0.729 0.466 0.703 0.791
10 (83.3) 8 (66.7) 8 (66.7) 3 (25.0) 3 (25.0)
11 (44.0) 12 (48.0) 12 (48.0) 9 (36.0) 15 (60.0)
12 (66.7) 11 (61.0) 5 (27.8) 6 (33.3) 10 (55.6)
0.057 0.498 0.105 0.798 0.122
Values are number (%). Abbreviations: ARMS, at risk mental state; UHR, ultra-high risk.
Please cite this article as: Kim, S.-W., et al., Are current labeling terms suitable for people who are at risk of psychosis?, Schizophr. Res. (2017), http://dx.doi.org/10.1016/j.schres.2017.01.027
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Fig. 1. Scores on the Mental Health Consumers' Experience of Stigma scale according to the patients' opinions regarding the labeling terms. Abbreviations: ARMS, at risk mental state; UHR, ultra-high risk; APS, attenuated psychosis syndrome; SPR, schizophrenia. *p-value b0.05; **p-value b0.01; ***p-value b 0.001.
at all. The responses of the professionals to the labeling terms did not differ according to when they used the term ‘psychosis’ (data not shown). The professionals used the term ‘ARMS’ (45.5%) most often with their patients rather than ‘UHR’ (25.0%) and other terms (33.3%). Professionals who used the term ‘UHR’ most often with their patients were significantly more likely to agree that ‘UHR’ is helpful in prevention and significantly less likely to agree that it should be renamed than did those who used ‘ARMS’ or others most often. Professionals who preferred the term ‘ARMS’ were more likely to agree that the term ‘UHR’ should be renamed (68.0%) compared with renaming the terms ‘ARMS’ or ‘APS’ (28.0% and 36.0%, respectively). 4. 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., in press; Mittal et al., 2015). Based on concerns about the stigma and unnecessary exposure to antipsychotics, APS was classified in the DSM-5′s appendix as a condition requiring further study (Corcoran, 2016). The present study aimed to explore mental health professionals' and patients' opinions and attitudes towards the labeling terms. The findings suggest that individuals at high risk of psychosis might experience less stigma related to the terms ‘UHR’ and ‘APS' than that expected by professionals. However, patients with a family history of psychosis and those who had transitioned to psychosis seemed to be exposed to a greater stigma when labeled with the term ‘UHR’. In this study, a relatively strong need to change the ‘UHR’ term was observed compared with the other two terms. ‘UHR’ for psychoses may be an appropriate term to alert professionals who are managing or researching patients at potential risk of developing psychosis. However, this term may not be suitable for patients and the public due to the potential stigma for psychosis and the fact
that the absolute risk is not in fact “ultra-high” because the majority of this population actually does not develop psychosis and it overemphasises the danger of the transition to psychosis (Lee et al., in press; Mittal et al., 2015). Partial disclosure, in which a clinician focuses on the presenting problem and the need for treatment but avoids imparting a diagnostic label, is an attempt to balance the ethical principles of autonomy and beneficence (Mittal et al., 2015). However, such avoidance is not effective in all situations, as young people tend to research their symptoms online and may even identify a clinical research program they are considering attending (Corcoran, 2016). Therefore, it would be better to use a suitable term for patients and professionals that may reflect the scientific facts and potential stigma. Labeling terms suggesting hope of a good outcome can minimize the stigma (Yung et al., 2012). The term ‘schizophrenia’ has been changed to ‘attunement disorder’ in South Korea, based on the metaphor of tuning a stringed instrument, which is analogous to the central nervous system of the brain (Lee et al., 2013). This approach may reduce the stigma by providing a link to potential recovery (Kim et al., 2012). Thus, if a term reflects the likelihood of prevention and recovery instead of ‘high risk’, it may reduce the stigma without weakening the emphasis on the importance of an early intervention (Lee et al., 2016). Forms of stigma in patients with a psychotic disorder are traditionally linked to the labeling process (Link et al., 1989; Yang et al., 2015). However, stigma also originates from symptomatic behaviour and bad clinical outcome (Anglin et al., 2014; Carpenter and van Os, 2011; Corcoran et al., 2005; Lien et al., 2015; Nelson and Yung, 2011; Yang et al., 2015). Even though there may be some stigma attached to labels associated with early detection and intervention to prevent intensification of psychotic symptoms, effective intervention at this stage may ultimately prevent the stigma associated with chronic psychotic symptoms and behaviours (Shrivastava et al., 2011). In fact, youth at risk of psychosis reported significantly more shame and discrimination related to their symptoms than to the label itself (Yang et al., 2015). Therefore, if a label that potentially carries some stigma leads to
Please cite this article as: Kim, S.-W., et al., Are current labeling terms suitable for people who are at risk of psychosis?, Schizophr. Res. (2017), http://dx.doi.org/10.1016/j.schres.2017.01.027
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treatment and possible prevention, the stigma associated with that label may ultimately be reduced. The general degree of stigmatising experiences encountered by patients was significantly higher in those who agreed that the labeling terms result in stigma, suggesting that the negative perceptions by patients did not solely originate from the stigma associated with the labeling terms, but were associated with previous stigmatising experiences. Relatively strong stigma about the ‘UHR’ term was observed in patients with a family history of psychosis and those who transitioned to psychosis. These results suggest that previous stigmatising experiences, including exacerbation of psychotic symptoms experienced by the patients themselves and their family members may have strengthened the stigma attached to this label. Professionals should pay particular attention to those patients who have had negative, potentially traumatic, experiences of psychotic episodes to understand and carefully manage the potential stigma associated with the labeling process. Directly addressing stigma issues and the extensive provision of psychoeducation about the illness and possibilities of recovery should be emphasized in this population. This study has several limitations for generalization of the results. First, the sample size was relatively small and all participants were enrolled from a single unit. Second, stigma associated with other terms, such as ‘clinical high risk (CHR)’ used in the USA and some European countries, was not investigated in this study. Further studies on the opinions of patients from different cultures and countries regarding various labels and associated stigma are required. Finally, the questionnaire to assess the labeling terms was used for the first time in this study. However, the results showing a relationship between the general degree of stigmatising experiences and the patients' responses to the questionnaire support the validity of the responses. In addition, the need of changing the terms ‘APS’ and ‘ARMS’ was lower in patients and professionals than that for the term ‘schizophrenia’, which are findings similar to those in previous studies showing that the stigma associated with the term ‘schizophrenia’ is higher than that associated with the term ‘APS’ (Lee et al., 2016). 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. Furthermore, specific professional development on stigma for clinicians working in the field of early psychosis needs to be provided to reduce the risk of possible “iatrogenic stigma”. The DSM-5 label of ‘attenuated psychosis syndrome’ may be suitable in terms of self-perceived stigma. However, the official diagnostic term for ‘psychosis risk syndrome’ may need to be newly determined because ‘APS’ does not include all the criteria for and concepts underlying formulations of being at high risk for psychosis. Psychopathology emerging in the early stage of a psychotic disorder involves a mixture of aberrant salience, motivational changes, affective dysregulation, and other features that dynamically influence one another over time, creating a range of clinical patterns (Krueger and Eaton, 2015; van Os, 2013). Furthermore, cumulative findings from long-term follow-up studies have demonstrated that people with subthreshold psychotic symptoms develop more transdiagnostic and pluripotent course (McGorry and Nelson, 2016). Therefore, a new term for psychosis risk syndrome is required to reflect the clinical staging and multidimensional concepts and the likelihood of future prevention of a range of disorders rather than purely high risk for psychosis.
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 approved the final version.
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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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Yang, L.H., Link, B.G., Ben-David, S., Gill, K.E., Girgis, R.R., Brucato, G., Wonpat-Borja, A.J., Corcoran, C.M., 2015. Stigma related to labels and symptoms in individuals at clinical high-risk for psychosis. Schizophr. Res. 168 (1–2), 9–15. Yoo, T., Kim, S.W., Kim, S.Y., Lee, J.Y., Kang, H.J., Bae, K.Y., Kim, J.M., Shin, I.S., Yoon, J.S., 2015. Relationship between suicidality and low self-esteem in patients with schizophrenia. Clin. Psychopharmacol. Neurosci. 13 (3), 296–301. Yung, A.R., McGorry, P.D., McFariane, C.A., Jackson, H.J., Patton, G.C., Rakkar, A., 1996. Monitoring and care of young people at incipient risk of psychosis. Schizophr. Bull. 22 (2), 283–303. Yung, A.R., Pan Yuen, H., Mcgorry, P.D., Phillips, L.J., Kelly, D., Dell'olio, M., Francey, S.M., Cosgrave, E.M., Killackey, E., 2005. Mapping the onset of psychosis: the comprehensive assessment of at-risk mental states. Aust. N. Z. J. Psychiatr. 39 (11–12), 964–971. Yung, A.R., Nelson, B., Thompson, A.D., Wood, S.J., 2010. Should a “risk syndrome for psychosis” be included in the DSMV? Schizophr. Res. 120 (1), 7–15. Yung, A.R., Woods, S.W., Ruhrmann, S., Addington, J., Schultze-Lutter, F., Cornblatt, B.A., Amminger, G.P., Bechdolf, A., Birchwood, M., Borgwardt, S., Cannon, T.D., de Haan, L., French, P., Fusar-Poli, P., Keshavan, M., Klosterkotter, J., Kwon, J.S., McGorry, P.D., McGuire, P., Mizuno, M., Morrison, A.P., Riecher-Rossler, A., Salokangas, R.K., Seidman, L.J., Suzuki, M., Valmaggia, L., van der Gaag, M., Wood, S.J., McGlashan, T.H., 2012. Whither the attenuated psychosis syndrome? Schizophr. Bull. 38 (6), 1130–1134.
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Contents lists available at ScienceDirect
Schizophrenia Research journal homepage: www.elsevier.com/locate/schres
Are current labeling terms suitable for people who are at risk of psychosis? Sung-Wan Kim a, Andrea Polari b, Fritha Melville b, Bridget Moller b, Jae-Min Kim a, Paul Amminger b,c, Helen Herrman b,c, Patrick McGorry b,c, Barnaby Nelson b,c,⁎ a b c
Department of Psychiatry, Chonnam National University Medical School, Gwangju, Republic of Korea Orygen Youth Health and Centre for Youth Mental Health, The University of Melbourne, Melbourne, Australia Orygen, The National Centre of Excellence in Youth Mental Health, The University of Melbourne, Melbourne, Australia
a r t i c l e
i n f o
Article history: Received 30 December 2016 Received in revised form 14 January 2017 Accepted 14 January 2017 Available online xxxx Keywords: Stigma Attenuated psychosis syndrome High risk Schizophrenia DSM-5 Labeling term
a b s t r a c t 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. © 2017 Elsevier B.V. All rights reserved.
1. 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
⁎ Corresponding author at: Orygen, The National Centre of Excellence in Youth Mental Health, 35 Poplar Rd (Locked Bag 10), Parkville, Victoria 3052, Australia. E-mail address: [email protected] (B. Nelson).
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 selfperceived 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, 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, 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
http://dx.doi.org/10.1016/j.schres.2017.01.027 0920-9964/© 2017 Elsevier B.V. All rights reserved.
Please cite this article as: Kim, S.-W., et al., Are current labeling terms suitable for people who are at risk of psychosis?, Schizophr. Res. (2017), http://dx.doi.org/10.1016/j.schres.2017.01.027
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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. 2. Methods 2.1. 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 practitioners employed at Orygen Youth Health who had worked with UHR patients were enrolled. The patients' inclusion criteria were as follows: (a) fulfilled one or more of the three operationally defined UHR criteria (Nelson et al., 2013) as assessed by the Comprehensive Assessment of At-Risk Mental States (Yung et al., 2005); (b) aged 15–25 years and (c) completed three or more clinical sessions with a mental health practitioner at the PACE clinic. A written information sheet for this study was provided to eligible participants and written consent was obtained from all participants. This study was approved by the Melbourne Health Human Research Ethics Committee. 2.2. Questionnaire and data A questionnaire developed by the researchers regarding the labels ‘ARMS’, ‘UHR’ and ‘APS’ was administered to the patients and professionals. An initial trial was performed with selected patients and professionals to determine whether the questionnaire was understandable. They were asked whether they understood all the questions and what could be clarified for future use. After revising the questionnaire based on this feedback, we initiated the data-collection process. It was composed of a total of 12 items with the same four questions for each three labeling terms as follows: (a) There is stigma (e.g., prejudice and discrimination from others) as a result of this term; (b) People are afraid and ashamed as a result of receiving this label; (c) The use of this term is helpful in preventing the development of psychosis; and (d) This term should be renamed to a more neutral or generic term. Subjects were asked how strongly they agreed or disagreed with each statement on a 5-point Likert scale (strongly agree to strongly disagree). Brief introduction for the labeling terms were provided before the items as follows: the term ‘ARMS’/‘UHR’ is used to identify young people who may be at increased risk of developing psychosis; or ‘APS’ has recently been considered as a new diagnosis for DSM-5 based on the ‘UHR’
criteria. Additionally, the participants were also asked their opinion about the need to rename the official diagnosis of ‘schizophrenia’. The Mental Health Consumers' Experience of Stigma scale was used to assess patients' experiences of stigma (Wahl, 1999). This stigma scale, which is composed of two subscales (9 stigma-related items and 12 discrimination-related items), measures patients' experiences with stigma and discrimination using a five-point Likert scale (“never” to “very often”). We administered the nine-item stigma subscale to assess the general level of perceived stigma. A higher total score indicated a higher level of perceived stigma. Data on the current psychiatric diagnoses, age, length of treatment at the PACE clinic and family history of psychiatric illness were collected from medical records. Professionals were asked when they were likely to use the term ‘psychosis’ with young people during different time points in the pre-psychotic and transitioned phases. They were also asked which term they used most often when speaking to youths at risk of psychosis. Data on sociodemographic characteristics and occupational classification, were also collected from the professionals. 2.3. Statistical analysis The answers ‘agree’ and ‘strongly agree’ regarding opinions about the labels were classified as agreement with the item. The frequency of agreement was compared between the patients and professionals using the chi-square test. The analysis was conducted separately in the patient and professional groups to compare agreement according to the sociodemographic and clinical characteristics using chi-square test for categorical variables and independent t-test for continuous variables. The associations of scores on the Stigma scale with opinions about the labels and the sociodemographic and clinical characteristics were analysed with independent t-test or analysis of variance for categorical variables or Pearson's correlation analysis for continuous variables. All statistical tests were two-tailed, with a significance level (pvalue) of 0.05. SPSS ver. 21.0 for Windows software was used for the statistical analysis. 3. Results 3.1. 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 while receiving mental health care at the PACE clinic. Twelve (24.0%) patients had a family history of psychosis, 21(42.0%) had a family history of another psychiatric illness, such as depression or substance abuse, and 17(34.0%) had no family history of a psychiatric illness. Mean (SD) employment duration of the professionals at Orygen Youth Health was 9.0(6.2) years. The occupational classification of the professionals was as follows: 18(32.7%) nurses, 16(29.1%) psychologists, 10(18.2%) psychiatrists, 3(5.5%) social workers, 4(7.3%) occupational therapists and 4(7.3%) others. 3.2. Opinions about the labeling terms Table 1 shows the responses of the patients and professionals to the questionnaire on opinions about the labeling terms. The patients were significantly less likely to agree that there is stigma associated with the terms ‘UHR’ and ‘APS’ compared with the mental health professionals. Patients tended to be less likely to agree than professionals that people are afraid and ashamed as a result of receiving the label ‘APS’, a difference approaching statistical significance (p = 0.073). In
Please cite this article as: Kim, S.-W., et al., Are current labeling terms suitable for people who are at risk of psychosis?, Schizophr. Res. (2017), http://dx.doi.org/10.1016/j.schres.2017.01.027
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Table 1 Responses of the patients and professionals to the questionnaire regarding terms for labeling.
At risk mental state (a) stigma (e.g., prejudice and discrimination from others) as a result of this term (b) afraid and ashamed as a result of receiving this label (c) helpful in preventing the development of psychosis (d) should be renamed to a more neutral or generic term Ultra High Risk (a) stigma (e.g., prejudice and discrimination from others) as a result of this term (b) afraid and ashamed as a result of receiving this label (c) helpful in preventing the development of psychosis (d) should be renamed to a more neutral or generic term Attenuated Psychosis Syndrome (a) stigma (e.g., prejudice and discrimination from others) as a result of this term (b) afraid and ashamed as a result of receiving this label (c) helpful in preventing the development of psychosis (d) should be renamed to a more neutral or generic term Schizophrenia renaming is required due to prejudice and stigma
Patients (n = 50) No. (%)
Professionals (n = 55) No. (%)
p-Value
20 (40.0) 20 (40.0) 21 (42.0) 17 (34.0)
21 (38.2) 15 (27.3) 31 (56.4) 11 (20.0)
0.849 0.167 0.141 0.105
21 (42.0) 22 (44.0) 19 (38.0) 21 (42.0)
37 (67.3) 30 (54.5) 25 (45.5) 27 (49.1)
0.009 0.280 0.439 0.466
18 (36.7) 19 (38.8) 16 (32.7) 13 (26.5)
33 (60.0) 31 (56.4) 25 (45.5) 18 (32.7)
0.018 0.073 0.182 0.490
24 (49.0)
28 (50.9)
0.844
with the items of negative attitude in all three terms showed significantly higher scores of the stigma scale than those who did not agree. Scores on the Stigma scale were also significantly higher for patients who agreed that the terms ‘UHR’ and ‘schizophrenia’ should be changed. Stigma scale score was not associated with any of the sociodemographic or clinical characteristics (data not shown). The patients' opinions regarding the labeling terms were not associated with current age, age at first contact with a mental health service or gender. Mean (SD) duration of treatment at the PACE clinic was significantly shorter for patients who agreed that the terms ‘ARMS’ and ‘UHR’ are helpful for preventing psychosis than for those who did not [6.7(5.2) vs. 10.6(6.4) months, p = 0·024, and 6.4(5.0) vs. 10.5(6.4) months, p = 0·022, respectively). Treatment duration did not differ according to the responses to the other items. The responses of the professionals did not differ according to their occupational classification and gender (data not shown).
patients, the overall frequency of negative responses (stigma and shame) to the terms were about 40%, with a similar rate seen for all three terms, i.e. ‘ARMS, UHR and APS’. In comparison, professionals more frequently showed negative responses to ‘UHR’ and ‘APS’ (ranging from 54.5 to 67.3%’) than for ‘ARMS’ (27.3% to 38.2%). The frequency of patients' and professionals’ responses indicating the need to rename the term to a more neutral or generic was lower in ‘APS’ (26.5% and 32.7%, respectively) than in ‘UHR’ (42.0% and 49.1%, respectively) and in ‘schizophrenia’ (49.0% and 50.9%, respectively). Table 2 shows the comparison of the responses of patients according to the presence of a family history and transition to psychosis. Patients with a family history of psychosis or other psychiatric illness were four times more likely to agree with the items of shame as a result of receiving ‘UHR’. In addition, patients with a family history of psychosis were significantly more likely to agree with the need to rename ‘UHR’ than the other two groups. Patients who had transitioned to psychosis were also significantly more likely to agree with the items of shame as a result of receiving ‘UHR’, whereas they were significantly less likely to agree that the ‘UHR’ label helped prevent the development of psychosis. Fig. 1 shows a comparison of the Stigma scale scores according to the patients' opinions regarding the labeling terms. Patients who agreed
3.3. Use of the term in professionals Among the professionals, 52.9% used the term ‘psychosis’ at the beginning of care, 31.4% used the term during care, 7.8% used the term when a transition to psychosis occurred and 7.8% did not use the term
Table 2 Comparison of the responses of patients and professionals according to clinical characteristics. For patients
For professionals
Patients with family history of psychiatric illness
At risk mental state (a) Stigma (b) Afraid and ashamed (c) Helpful in prevention (d) Should be renamed Ultra High Risk (a) Stigma (b) Afraid and ashamed (c) Helpful in prevention (d) Should be renamed Attenuated Psychosis Syndrome (a) Stigma (b) Afraid and ashamed (c) Helpful in prevention (d) Should be renamed Schizophrenia; renaming
Psychosis (n = 12)
Others (n = 21)
None (n = 17)
5 (41.7) 6 (50.0) 3 (25.0) 5 (41.7)
8 (38.1) 8 (38.1) 11 (52.4) 7 (33.3)
7 (41.2) 6 (35.3) 7 (41.2) 5 (29.4)
7 (58.3) 7 (58.3) 3 (25.0) 9 (75.0)
8 (38.1) 12 (57.1) 9 (42.9) 8 (38.1)
5 (41.7) 6 (50.0) 2 (16.7) 4 (33.3) 8 (66.7)
7 (33.3) 8 (38.1) 10 (47.6) 4 (19.0) 10 (50.0)
p-Value
Patients converted to psychosis Yes (n = 11)
No (n = 39)
0.973 0.709 0.308 0.787
5 (45.5) 7 (63.6) 3 (27.3) 5 (45.5)
15 (38.5) 13 (33.3) 18 (46.2) 12 (30.8)
6 (35.3) 3 (17.6) 7 (41.2) 4 (23.5)
0.415 0.026 0.564 0.019
4 (36.4) 8 (72.7) 1 (9.1) 5 (45.5)
6 (37.5) 5 (31.3) 4 (25.0) 5 (31.3) 6 (35.3)
0.890 0.600 0.138 0.585 0.248
3 (27.3) 5 (45.5) 5 (45.5) 2 (18.2) 5 (45.5)
p-Value
Terms that clinicians used most often to patients
p-Value
UHR (n = 12)
ARMS (n = 25)
Others (n = 18)
0.736 0.090 0.319 0.623
3 (25.0) 3 (25.0) 10 (83.3) 0 (0.0)
8 (32.0) 4 (16.0) 14 (56.0) 7 (28.0)
10 (55.6) 8 (44.4) 7 (38.9) 4 (22.2)
0.166 0.116 0.055 0.132
17 (43.6) 14 (35.9) 18 (46.2) 16 (41.0)
0.741 0.042 0.035 1.000
7 (58.3) 5 (41.7) 11 (91.7) 2 (16.7)
17 (68.0) 15 (60.0) 8 (32.0) 17 (68.0)
13 (72.2) 10 (56.6) 6 (33.3) 8 (44.4)
0.725 0.574 0.001 0.012
15 (39.5) 14 (36.8) 11 (28.9) 11 (28.9) 19 (50.0)
0.724 0.729 0.466 0.703 0.791
10 (83.3) 8 (66.7) 8 (66.7) 3 (25.0) 3 (25.0)
11 (44.0) 12 (48.0) 12 (48.0) 9 (36.0) 15 (60.0)
12 (66.7) 11 (61.0) 5 (27.8) 6 (33.3) 10 (55.6)
0.057 0.498 0.105 0.798 0.122
Values are number (%). Abbreviations: ARMS, at risk mental state; UHR, ultra-high risk.
Please cite this article as: Kim, S.-W., et al., Are current labeling terms suitable for people who are at risk of psychosis?, Schizophr. Res. (2017), http://dx.doi.org/10.1016/j.schres.2017.01.027
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Fig. 1. Scores on the Mental Health Consumers' Experience of Stigma scale according to the patients' opinions regarding the labeling terms. Abbreviations: ARMS, at risk mental state; UHR, ultra-high risk; APS, attenuated psychosis syndrome; SPR, schizophrenia. *p-value b0.05; **p-value b0.01; ***p-value b 0.001.
at all. The responses of the professionals to the labeling terms did not differ according to when they used the term ‘psychosis’ (data not shown). The professionals used the term ‘ARMS’ (45.5%) most often with their patients rather than ‘UHR’ (25.0%) and other terms (33.3%). Professionals who used the term ‘UHR’ most often with their patients were significantly more likely to agree that ‘UHR’ is helpful in prevention and significantly less likely to agree that it should be renamed than did those who used ‘ARMS’ or others most often. Professionals who preferred the term ‘ARMS’ were more likely to agree that the term ‘UHR’ should be renamed (68.0%) compared with renaming the terms ‘ARMS’ or ‘APS’ (28.0% and 36.0%, respectively). 4. 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., in press; Mittal et al., 2015). Based on concerns about the stigma and unnecessary exposure to antipsychotics, APS was classified in the DSM-5′s appendix as a condition requiring further study (Corcoran, 2016). The present study aimed to explore mental health professionals' and patients' opinions and attitudes towards the labeling terms. The findings suggest that individuals at high risk of psychosis might experience less stigma related to the terms ‘UHR’ and ‘APS' than that expected by professionals. However, patients with a family history of psychosis and those who had transitioned to psychosis seemed to be exposed to a greater stigma when labeled with the term ‘UHR’. In this study, a relatively strong need to change the ‘UHR’ term was observed compared with the other two terms. ‘UHR’ for psychoses may be an appropriate term to alert professionals who are managing or researching patients at potential risk of developing psychosis. However, this term may not be suitable for patients and the public due to the potential stigma for psychosis and the fact
that the absolute risk is not in fact “ultra-high” because the majority of this population actually does not develop psychosis and it overemphasises the danger of the transition to psychosis (Lee et al., in press; Mittal et al., 2015). Partial disclosure, in which a clinician focuses on the presenting problem and the need for treatment but avoids imparting a diagnostic label, is an attempt to balance the ethical principles of autonomy and beneficence (Mittal et al., 2015). However, such avoidance is not effective in all situations, as young people tend to research their symptoms online and may even identify a clinical research program they are considering attending (Corcoran, 2016). Therefore, it would be better to use a suitable term for patients and professionals that may reflect the scientific facts and potential stigma. Labeling terms suggesting hope of a good outcome can minimize the stigma (Yung et al., 2012). The term ‘schizophrenia’ has been changed to ‘attunement disorder’ in South Korea, based on the metaphor of tuning a stringed instrument, which is analogous to the central nervous system of the brain (Lee et al., 2013). This approach may reduce the stigma by providing a link to potential recovery (Kim et al., 2012). Thus, if a term reflects the likelihood of prevention and recovery instead of ‘high risk’, it may reduce the stigma without weakening the emphasis on the importance of an early intervention (Lee et al., 2016). Forms of stigma in patients with a psychotic disorder are traditionally linked to the labeling process (Link et al., 1989; Yang et al., 2015). However, stigma also originates from symptomatic behaviour and bad clinical outcome (Anglin et al., 2014; Carpenter and van Os, 2011; Corcoran et al., 2005; Lien et al., 2015; Nelson and Yung, 2011; Yang et al., 2015). Even though there may be some stigma attached to labels associated with early detection and intervention to prevent intensification of psychotic symptoms, effective intervention at this stage may ultimately prevent the stigma associated with chronic psychotic symptoms and behaviours (Shrivastava et al., 2011). In fact, youth at risk of psychosis reported significantly more shame and discrimination related to their symptoms than to the label itself (Yang et al., 2015). Therefore, if a label that potentially carries some stigma leads to
Please cite this article as: Kim, S.-W., et al., Are current labeling terms suitable for people who are at risk of psychosis?, Schizophr. Res. (2017), http://dx.doi.org/10.1016/j.schres.2017.01.027
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treatment and possible prevention, the stigma associated with that label may ultimately be reduced. The general degree of stigmatising experiences encountered by patients was significantly higher in those who agreed that the labeling terms result in stigma, suggesting that the negative perceptions by patients did not solely originate from the stigma associated with the labeling terms, but were associated with previous stigmatising experiences. Relatively strong stigma about the ‘UHR’ term was observed in patients with a family history of psychosis and those who transitioned to psychosis. These results suggest that previous stigmatising experiences, including exacerbation of psychotic symptoms experienced by the patients themselves and their family members may have strengthened the stigma attached to this label. Professionals should pay particular attention to those patients who have had negative, potentially traumatic, experiences of psychotic episodes to understand and carefully manage the potential stigma associated with the labeling process. Directly addressing stigma issues and the extensive provision of psychoeducation about the illness and possibilities of recovery should be emphasized in this population. This study has several limitations for generalization of the results. First, the sample size was relatively small and all participants were enrolled from a single unit. Second, stigma associated with other terms, such as ‘clinical high risk (CHR)’ used in the USA and some European countries, was not investigated in this study. Further studies on the opinions of patients from different cultures and countries regarding various labels and associated stigma are required. Finally, the questionnaire to assess the labeling terms was used for the first time in this study. However, the results showing a relationship between the general degree of stigmatising experiences and the patients' responses to the questionnaire support the validity of the responses. In addition, the need of changing the terms ‘APS’ and ‘ARMS’ was lower in patients and professionals than that for the term ‘schizophrenia’, which are findings similar to those in previous studies showing that the stigma associated with the term ‘schizophrenia’ is higher than that associated with the term ‘APS’ (Lee et al., 2016). 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. Furthermore, specific professional development on stigma for clinicians working in the field of early psychosis needs to be provided to reduce the risk of possible “iatrogenic stigma”. The DSM-5 label of ‘attenuated psychosis syndrome’ may be suitable in terms of self-perceived stigma. However, the official diagnostic term for ‘psychosis risk syndrome’ may need to be newly determined because ‘APS’ does not include all the criteria for and concepts underlying formulations of being at high risk for psychosis. Psychopathology emerging in the early stage of a psychotic disorder involves a mixture of aberrant salience, motivational changes, affective dysregulation, and other features that dynamically influence one another over time, creating a range of clinical patterns (Krueger and Eaton, 2015; van Os, 2013). Furthermore, cumulative findings from long-term follow-up studies have demonstrated that people with subthreshold psychotic symptoms develop more transdiagnostic and pluripotent course (McGorry and Nelson, 2016). Therefore, a new term for psychosis risk syndrome is required to reflect the clinical staging and multidimensional concepts and the likelihood of future prevention of a range of disorders rather than purely high risk for psychosis.
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 approved the final version.
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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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