We share the caution of Lieberman and First 1 in their leader about
renaming schizophrenia. The stigma and discrimination of people given the
diagnosis of schizophrenia are grave and influence the quality of their
life as well as the course and outcome of the disease 2 3. In other
domains of medicine there are numerous examples of name changes which were
intended to make a condition more speakable, for example, Hansen’s disease
(leprosy), or Down’s syndrome (‘mongolism’), which has changed name
repeatedly over the last century without clear data on whether this has
been beneficial 4. These debates are rarely illuminated by evidence.
We have recently co-ordinated the INDIGO (International Study of
Discrimination and Stigma Outcomes) Study. In 28 countries across the
world (full details are available from GT) face to face interviews were
completed with 736 people with a clinical diagnosis of schizophrenia. The
main purpose of the study was to assess anticipated and experienced
discrimination. Several questions related to the name of the condition. In
reply to the question ‘Do you know what diagnosis your doctor has made?’
83% answered yes. To the question ‘Do you agree with the diagnosis?’; 72%
agreed, 17% disagreed and 10% were unsure. For the question ‘How much has
it been an advantage or disadvantage for you to have the specific
diagnosis of schizophrenia?’ 54% reported disadvantage, 26% advantage (eg
in directing them information on the condition, or to a self-help group),
and 18% reported no difference.
It is also notable that after the renaming of schizophrenia in Japan
the proportion of such people who were told the name of their condition
increased from 8% to 60% 5. Nevertheless a change of name should not
happen alone: it would be of central importance to introduce a number of
changes into the legislation, services and education of professionals and
of the public if we wish to improve the way in which people with
schizophrenia have to live. Changing the name of schizophrenia would in
that instance probably be beneficial because it would be an indicator of
change rather than the change. In particular, before initiating far-
reaching changes in psychiatric terminology it is vital to have clear
evidence of any benefit, particular from the perspective of people with
schizophrenia.
Graham Thornicroft, Norman Sartorius, Diana Rose and Elaine Brohan.
References
(1) Lieberman JA, First MB. Renaming schizophrenia. BMJ 2007;
334(7585):108.
(2) Sartorius N, Schulze H. Reducing the Stigma of Mental Illness. A
Report from a Global Programme of the World Psychiatric Association.
Cambridge: Cambridge University Press; 2005.
(3) Thornicroft G. Shunned: Discrimination against People with Mental
Illness. Oxford: Oxford University Press; 2006.
(4) Jain R, Thomasma DC, Ragas R. Down syndrome: still a social stigma. Am
J Perinatol 2002; 19(2):99-108.
(5) Kim Y, Berrios GE. Impact of the term schizophrenia on the culture of
ideograph: the Japanese experience. Schizophr Bull 2001; 27(2):181-185.
Rapid Response:
Renaming schizophrenia:the need for evidence
Dear Dr. Godlee,
Re: Renaming schizophrenia: the need for evidence
We share the caution of Lieberman and First 1 in their leader about
renaming schizophrenia. The stigma and discrimination of people given the
diagnosis of schizophrenia are grave and influence the quality of their
life as well as the course and outcome of the disease 2 3. In other
domains of medicine there are numerous examples of name changes which were
intended to make a condition more speakable, for example, Hansen’s disease
(leprosy), or Down’s syndrome (‘mongolism’), which has changed name
repeatedly over the last century without clear data on whether this has
been beneficial 4. These debates are rarely illuminated by evidence.
We have recently co-ordinated the INDIGO (International Study of
Discrimination and Stigma Outcomes) Study. In 28 countries across the
world (full details are available from GT) face to face interviews were
completed with 736 people with a clinical diagnosis of schizophrenia. The
main purpose of the study was to assess anticipated and experienced
discrimination. Several questions related to the name of the condition. In
reply to the question ‘Do you know what diagnosis your doctor has made?’
83% answered yes. To the question ‘Do you agree with the diagnosis?’; 72%
agreed, 17% disagreed and 10% were unsure. For the question ‘How much has
it been an advantage or disadvantage for you to have the specific
diagnosis of schizophrenia?’ 54% reported disadvantage, 26% advantage (eg
in directing them information on the condition, or to a self-help group),
and 18% reported no difference.
It is also notable that after the renaming of schizophrenia in Japan
the proportion of such people who were told the name of their condition
increased from 8% to 60% 5. Nevertheless a change of name should not
happen alone: it would be of central importance to introduce a number of
changes into the legislation, services and education of professionals and
of the public if we wish to improve the way in which people with
schizophrenia have to live. Changing the name of schizophrenia would in
that instance probably be beneficial because it would be an indicator of
change rather than the change. In particular, before initiating far-
reaching changes in psychiatric terminology it is vital to have clear
evidence of any benefit, particular from the perspective of people with
schizophrenia.
Graham Thornicroft, Norman Sartorius, Diana Rose and Elaine Brohan.
References
(1) Lieberman JA, First MB. Renaming schizophrenia. BMJ 2007;
334(7585):108.
(2) Sartorius N, Schulze H. Reducing the Stigma of Mental Illness. A
Report from a Global Programme of the World Psychiatric Association.
Cambridge: Cambridge University Press; 2005.
(3) Thornicroft G. Shunned: Discrimination against People with Mental
Illness. Oxford: Oxford University Press; 2006.
(4) Jain R, Thomasma DC, Ragas R. Down syndrome: still a social stigma. Am
J Perinatol 2002; 19(2):99-108.
(5) Kim Y, Berrios GE. Impact of the term schizophrenia on the culture of
ideograph: the Japanese experience. Schizophr Bull 2001; 27(2):181-185.
Competing interests:
None declared
Competing interests: No competing interests