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Schizophrenia: Are We Ready for a Name Change?
Matcheri Keshavan, MD, Raquelle Mesholam-Gately, Ph.D., and the Consumer Advisory Board
Massachusetts Mental Health Center Public Psychiatry Division of Beth Israel Deaconess Medical Center
Harvard Medical School
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At the time of this presentation, Tom Coderre served as Acting Assistant Secretary for Mental Health and Substance Use at SAMHSA. The opinions expressed herein are the views of the speakers, and do not reflect the official position of the Department of Health and Human Services (DHHS), or SAMHSA. No official support or endorsement of DHHS, SAMHSA, for the opinions described in this presentation is intended or should be inferred.
This work is supported by grant 1H79SM081775 from the DHHS, SAMHSA.
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Outline
• Complete Part 1 of “Renaming Schizophrenia” survey and feedback
• Rationale for a name change and renaming efforts around the world
• Complete Part 2 of “Renaming Schizophrenia” survey and feedback
• Description of the Consumer Advisory Board (CAB) and findings from our “Renaming Schizophrenia” survey project
• Implications for how to talk to people with early psychosis
• Reflections from CAB members
• Comments/discussion
Renaming Schizophrenia and other Psychiatric Disorders
• Previously called Dementia Praecox by Kraepelin, the term “schizophrenia” is >100 years old (Bleuler 1911) which continues to be debated and carries a lot of confusion and stigma.
• Advances in research clearly shows that schizophrenia should be re-conceptualized as part of “spectrum of psychosis” ( ~ 30% of the total).
• Other psychiatric disorders are being renamed, for similar reasons: Manic Depressive Illness was changed to Bipolar Disorder in the 1960s; Mental retardation was renamed “Intellectual Disability.”
Why Rename Schizophrenia?• “Schizophrenia” means “split mind” in Greek has been used in the media as a
metaphor to describe any erratic behavior for example:--An incoherent and self-contradicting politician.--Volatile financial market.--A football team with inconsistent performance--A country’s population that is split on an issue( Brexit in the UK, border “Wall” in the U.S.).
• This has confused the public about what schizophrenia is.
Joseph, Tandon, Duckworth, and Keshavan. Schizophrenia in Twitter. Schizophrenia Research 165 (2015) 111–115
Schizophrenia is often used an adjective
Why Rename Schizophrenia?
It is Develop-mental!
Split personality
It is Themother!! It is
Dopamine!
It is aSane response to anInsane world(Szasz)
It is a spiritualBreakthrough and not a nervous breakdown (Laing)
We don’t know what it is! There are many theories and myths
Schizophrenia Renaming Efforts Around the World
1. Japan: “Integration Disorder (Togo Shitcho Sho )• (Formerly Seishin Bunretsu Byo (“mind-split-disease”)• The old term was strongly associated with “criminal”, and this association became significantly weaker with
the new term (Takahashi et al 2009)• Nishimura and Ono (12) reported that the percentage of cases in which patients were informed of the
diagnosis increased from 36.7% in 2002 to 65.0% in 2003 and eventually to 69.7% in 2004.• 'Integration disorder' was associated with increased endorsement of a biopsychosocial cause and reduced
attributions of dangerousness but also increased social distance (Ellison et al 2015). • Reduced negative news coverage about illness after renaming (Aoki et al 2016)
2. South Korea: “Attunement Disorder” (Johyeonbyung)• Johyeonbyung induced significantly less prejudice and stigma than did Jungshinbunyeolbyung (split-
mind) ( Kim et al., 2012).
3. Hong Kong and Taiwan: “Disordered thought and Perception”• Renaming schizophrenia alone has not altered negative wording in newspaper articles: A text-mining finding
in Taiwan (Chen, 2019)
Attunement disorder• Johyeonbyung, metaphorically describes schizophrenia as a disease of inadequate tuning of
the neural network or the mind• In schizophrenia, both structural and functional abnormalities in brain connectivity can be
found
did you inform patients or their guardians of the exact diagnosis?
Renaming Schizophrenia: Proposed Alternatives
• Kraepelin-Bleuler Disease (Kim and Berrios, 2001)
• Salience Syndrome (Van Os, 2009)
• Psychosis Susceptibility Syndrome (George Klija, 2013)
• Neuro-Emotional Integration Disorder (Levin, 2006)
• Bleuler’s Syndrome (Henderson and Nash, 2014)
• Conative, Cognitive and Reality Distortion Syndrome (CONCORD) (Keshavan, Nasrallah, and Tandon, 2011)
• Psychosis Spectrum Disorder (Guloksuz, Van Os, 2018)
• Dopamine dysregulation disorder (Sugiura et al., 2001)
• Altered Perception Syndrome (suggested by a person with lived experience of mental illness)
“There may be impaired integration of brain connectivity in schizophrenia”Eack, Wojtalik, Keshavan, & Minshew. Schizophr Res. 2017 May; 183: 102–109.
Psychosis Is A Spectrum Of Multiple Conditions
Too Much Dopamine in Schizophrenia?
Renaming Schizophrenia:Growing Momentum from the Profession
• Two major journals have revised their title:1) Schizophrenia Bulletin
-The Journal of Psychoses and Related Disorder2) Schizophrenia Research
-A Translational Journal of the Psychosis Spectrum
• DSM-5 revised the section “Schizophrenia and other Psychotic Disorders” “to” Schizophrenia Spectrum and other Psychotic Disorders”
• New England Journal of Medicine used to publish updates on “Schizophrenia” but recently changed the topic to "Psychotic Disorders” (Lieberman & First, 2008).
Potential Advantages of a new name for Schizophrenia
• A new medical term may avoid the metaphoric use of “Schizophrenia”
• Reduced iatrogenic helplessness, stigma and discrimination
• A new name may stimulate public awareness and improve the image of the condition
• Facilitates communications between patients and mental health professionals
• Will foster new scientific advances and research models
Not everyone agrees…
So far, however, the scientific community of western countries has not yet come to an agreement on any alternative name. Meeting relevant criteria for a new name, finding agreement among all involved groups and replacing the established term is a complex process. For now, the concept of schizophrenia has proven its reliability, clinical utility and validity, although schizophrenia is a stigmatised mental disorder like many others. Renaming cannot be the only answer to negative beliefs, prejudice and discrimination.Gaebel W1, Kerst A1. The debate about renaming schizophrenia: a new name would not resolve the stigma. Epidemiol Psychiatr Sci. 2019 Jun;28(3):258-261.
Preliminary Conclusions about Renaming Schizophrenia
• The term schizophrenia for the illness originally called dementia Praecox has been criticized as inaccurate, and stigmatizing.
• Several efforts have been made internationally to develop alternative names for this illness, and some professional organizations have broadened the concept to a spectrum entity.
• Some evidence exists that changing the name (e.g. integration disorder, attunement disorder, thought/ perception disorder) may have led to more openness about the diagnosis, and also less stigma, though the literature is somewhat mixed.
• Renaming/abolishing the term schizophrenia requires careful deliberation and some effort in the beginning, but the revision is well worth the effort considering the benefits in the long run.
Are we ready for a name change for schizophrenia? A survey based on lived experienceMesholam-Gately RI & Varca N, Spitzer C, Parrish E, Hendel V, Larson L, Rosa-Baez C, Schwirian N, Stromeyer C, Williams M, Behnke S, Seidman L, Saks E, Keshavan M. Manuscript submitted for publication.
Survey Participant Characteristics(n = 1,190)
DemographicsMean (SD) Age= 44.7 (16.2), range 11-87
%Gender
Female 67.2Race
White 83.8Asian 5.4
Multi-Racial 5.1African American 3.4
American Indian or Alaska Native 0.9
EthnicityHispanic/Latinx 6.5
ResidencyUS Resident 84.0
Psychosis Experience%
Individual Experience of Psychosis?
Yes 25.0Diagnosis
Schizophrenia 37.7Schizoaffective 27.2Mood Disorder w/Psychosis 18.3
Other 16.8Family Member with Psychosis?
Yes 49.4Diagnosis
Schizophrenia 42.8Schizoaffective 20.4Mood Disorder w/Psychosis 23.4
Other 13.5
Stakeholder Background%
Stakeholder GroupFamily Member 49.4
Mental Health Provider 46.5Person With Lived
Experience of Mental Illness 32.5
Researcher 18.5Government Official 2.0
Other 1.4Type Of Mental Health Provider
Psychologist 32.7Social Worker 20.0Psychiatrist 13.9
Peer Specialist 13.5Psychiatric Nurse 7.8
Other 12.2
Note. There is respondent overlap across stakeholder groups as respondents often identified with more than
one group; thus, the total percentages are > 100%.
Survey Findings• The majority, 74.1%, of respondents are in favor of a name change.
• Most (71.4%) find the name schizophrenia stigmatizing with a mean (SD) score of 3.98 (1.23) out of a scale of 1-5.
• Respondents largely preferred alternative names to schizophrenia.
• Of the proposed alternate names, “Altered Perception Syndrome” had the highest mean rating of 3.28.
• Most express hope that a name change will reduce stigma and discrimination, and better represent the characteristics of the condition.
0
0.5
1
1.5
2
2.5
3
3.5
4
Al teredPerceptionSyndrome
AttunementDisorder
Bleuler'sSyndrome
DisconnectivitySyndrome
DopamineDysregulationSyndrome
IntegrationDisorder
Neuro-EmotionalIntegrationDisorder
PsychosisSpectrumSyndrome
SalienceSyndrome
Schizophrenia
Mea
n R
atin
gs
Alternative Names
Figure 2. Ratings of Alternative Names for Schizophrenia
BeforeDescriptions
AfterDescriptions
Figure 1. How Stigmatizing Is The
Term, ‘Schizophrenia’?
1. Not At
All
5. Very Much
Agree
Mean(SD) Score: 3.98 (1.23)
Implications for how to talk to People with a Newly Diagnosed Psychosis
• Individualize
• Normalize
• Setting
• Perspective
• Information
• Repeat as needed, respond to questions, reassure & instill hope
• Empathize, and empower
• Strategy and next steps
Altered Perception Syndrome: Indicates that people with this illness experience sensory information differently in a way that changes their day-to-day experiences.Attunement Disorder: Originating in Korea, the term translates to mean that different areas of mental functioning (e.g., thoughts, feelings) are not in sync with one another. Bleuler’s Syndrome: Named after Swiss psychiatrist, Eugen Bleuler, the first person to define diagnostic features of the illness.Disconnectivity Syndrome: Refers to the altered connections between different brain regions in people with the illness.Dopamine Dysregulation Syndrome: This name was coined because of the significant role of dopamine (a chemical in the brain that helps nerves communicate with each other) in psychosis, and the role of dopamine blockers in treatment.Integration Disorder: Originating in Japan, the term translates to mean that there is a difficulty integrating different aspects of mental functioning.Neuro-Emotional Integration Disorder: A biopsychosocial (biological, psychological, and social) term describing difficulty integrating cognition, emotion, and behavior.Psychosis Spectrum Syndrome: This term refers to a spectrum of common psychosis symptoms, such as hallucinations, delusions and thought difficulties.Salience Syndrome: This term refers to alterations in the way people with this illness attach importance to their experiences or beliefs.
Reflections from Consumer Advisory Board (CAB) Members
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