Schizophrenia is a psychiatric diagnosis that carries a heavy social stigma. However, experts have also questioned the validity and utility of the label. In response, some experts and service-user groups have called for different conceptualizations and terms for those experiencing psychotic symptoms.
Doctors Matcheri Keshavan and Raquelle Mesholam-Gately are currently tackling this issue. They recently completed a project in collaboration with the Consumer Advisory Board of Beth Israel Deaconess Medical Center in Boston, MA, examining the benefits and drawbacks of renaming schizophrenia.
Matcheri Keshavan, M.D. is the Stanley Cobb Professor of Psychiatry at Harvard Medical School and Academic Head of Psychiatry and Beth Israel Deaconess Medical Center, Massachusetts Mental Health Center.
Raquelle Mesholam-Gately, Ph.D., is an Assistant Professor of Psychology in the Department of Psychiatry at Harvard Medical School. She is also the director of the Consumer Advisory Board and conducts neuropsychology research in the Psychosis Research Program at the Massachusetts Mental Health Center.
In this interview, they discuss what they learned about the issues surrounding the renaming of schizophrenia in their research with consumers and service users. In particular, they reflect on how this psychiatric diagnosis can impact the therapeutic alliance necessary for effective treatment and the overall quality of life of people diagnosed.
The transcript below has been edited for length and clarity. Listen to the audio of the interview here.
Bernalyn Ruiz: We’re going to be talking about a particular project that you both, Dr. Keshavan and Dr. Mesholam-Gately, have led on renaming schizophrenia. But first, I’d like to learn a bit about both of you. Can you please tell us what drew you to your respective fields?
Keshavan: I’m a psychiatrist and have practiced this profession for over three decades. Many moments were kind of consciously or unconsciously drawing me towards psychiatry from early on in my medical career, including the fact that people somehow felt that they could somehow come and talk to me about their problems. I thought that that was something that was a strength. I also found their stories often even more interesting than all the organ system problems we were taking care of in medical school. The person’s life experience seemed much more captivating.
What drove me to study schizophrenia is an interesting question. When I was a third-year medical student, a patient was brought to the emergency room, and he was brought in like he was a statue in a car. He had a fixed position, standing, holding his hand up as if he was stopping something. He was mute, unable to speak. He was that way for a couple of days. He saw all of the different specialty positions, including neurologists and internists, and nothing specific was found to be the reason for his condition. Then a psychiatrist came and took one look at him and said, “this is catatonia, let’s get him ECT, and he’ll be okay.”
So he was transported to the psychiatry ward, and a course of ECT was given, and he woke up and started talking. That, to me, was the most amazing thing I had ever seen. Then he said that he was hearing voices coming from the sky. One particular voice told him that he could stop the floods in the city with his hand, which is why he was holding his hand in that kind of posture during his catatonic episode. So I asked my psychiatrist teacher what causes this and what’s happening in the brain that might be producing this kind of condition. She had no idea.
To me, it appeared like there was this condition, which was dramatic and very startling in its presentation, but there was absolutely no knowledge as to how this might come about. What kind of disease is this? Is it a brain disease? It was not even clear for the field that schizophrenia was necessarily a brain disease. This was in the late 1970s. So that is what got me interested in schizophrenia.
Mesholam-Gately: So, as you mentioned, I’m a clinical psychologist with a specialty in neuropsychology. I am fascinated by brain-behavior relationships and the multiple factors and complexities surrounding why people act, think, and feel the way that they do. I believe that part of that interest for me stems from seeing the impacts of serious mental illness in close family members and a brain tumor in another close relative.
Both of my parents worked in the mental health field. Then, for a while, I worked as a certified nursing assistant on the dementia unit of a nursing home. That was during college. Through all of those experiences, I saw that there’s still so much work to be done to help people with a variety of neuropsychiatric conditions. Not only in terms of better understanding and treating these conditions but in terms of advocacy.
That latter part, I think, is particularly relevant for mental illness. You know, while there’s no question that we need to better understand and treat and advocate for people with many health conditions, we unfortunately still live in a world that’s not always friendly to people with lived experience with mental illness. There’s often so much stigma that people with mental illness face that they can feel like they don’t have a voice, leading to marginalization and other inequities.
I think that makes advocacy for people with mental illness especially important. In my job as a psychologist working in a psychosis program at an academic medical center, I feel privileged that I can contribute not only to assessment, treatment, research, and teaching but also to advocacy efforts.
Part of that, which I think we’ll be speaking about soon, is our work with the Consumer Advisory Board and this project on renaming schizophrenia. So I think those are two examples of advocacy.
Ruiz: Can you tell the listeners about this project and the Consumer Advisory Board?
Mesholam-Gately: I joined the Consumer Advisory Board (CAB) at the end of 2012. At that point, the group had been in existence for a few years. It had been born from a wonderful initiative from the Massachusetts Department of Mental Health to expand the engagement of people with lived experience within our research center operations.
The CAB conducts mental health participatory action research with a particular emphasis on psychosis. We approach this task with the perspectives of people who have the expertise of lived experience with mental illness and people with clinical and research experience regarding mental illness, or both. Recognizing the unique strengths that each brings, it’s done as a partnership where all of our contributions are equally valued.
Our program’s research has been informed and enhanced by the involvement of the CAB at all stages of the research process. That includes generating research questions, methodology and instrument selection, recruitment guidance, conducting research activities, data review, and analysis, formulating conclusions, reviewing grant applications, and recommending dissemination strategies. In addition to the survey project on renaming schizophrenia, which we’ll be telling you about shortly, we recently completed a research project on the therapeutic alliance and its relationship with quality of life and serious mental illness.
What we have found is that not only are participatory approaches for behavioral health research feasible, but they improve the impact, reach, value, applicability, trustworthiness, and usability of the results as well as the relevance of the findings of those it aims to serve. These approaches also have been shown to expedite the dissemination of findings in clinical and real-world settings, especially for underserved populations.
Moreover, when there are authentic partnerships with people with lived experience and behavioral health research. It is authentic and not a tokenistic form of inclusion (with no ability to meaningfully influence project decisions). Those authentic partnerships honor person-centered and recovery-oriented perspectives. They recognize the expertise that’s found in lived experience, and they respect patient autonomy. With all those advantages, the hope is that these participatory approaches for psychosis will improve early identification and intervention, reduce treatment disengagement, stigma, and minority disparities, and ultimately minimize disability and improve lives. I can also share some quotes that I wrote down from CAB members about the benefits of participatory approaches to psychosis research because, to me, their perspectives were so meaningful. So, one of the members said:
“To be considered a valued member of a team, doing beneficial work contributes to recovery and can imbue greater self-respect. You do productive things. It’s a place also where we can actually put our mental health history to use. So it’s supportive but not specifically designed to be that way. Which is good because it feels a lot better to do something productive than think you’re in such rough shape that all you’re capable of doing is receiving support.”
Another person said:
“In participatory research, people with lived experience might notice some sensitive issues, which might not be recognized by researchers who had never had to deal with living with a diagnosis, they might also be a little more attuned to whether something is going to make the participant feel like a lab, guinea pig. And that holding a position that acknowledges and accepts people who have these illnesses as part of their lives is beneficial for stability. It’s an environment where the dynamic isn’t a completely distinct divide between researchers and participants, or treaters, and patients and clients. There isn’t any division of status; it creates opportunities for people in an environment and community where mental health conditions are accepted, and where they’re working on something, not just entirely focused on the fact that they have a diagnosis.”
I want to say that personally for me, this partnership with the CAB has truly made me a better, more mindful researcher, clinician, and person. I feel like this relationship has been a life-changing experience. I’m honored and humbled to be part of the group. I hope that one day, all of our research, all of our mental health research will be done in collaboration with the people we’re trying to serve. Because frankly, that’s the way it should be.
Ruiz: Let’s turn to this project, “renaming schizophrenia.” How did you arrive at this project? Were there any personal experiences in your life or work that led you to this question?
Keshavan: Maybe I can take this first. You know, in my career, I have all along wondered about the validity of the diagnostic labels that we apply to the populations we serve. This is informed by what patients have told me.
I’ll give you one example of a young woman, but many others asked similar questions. This person was in her mid-20s, had been referred to me after she had seen a couple of other psychiatrists, and had not done very well with treatment response. Let’s call her Mary. As I was getting to know her, I asked the question, “what do you think is the nature of your problem? What’s the diagnosis that people have given you?” She said:
“Look, I had problems with my attention and was not focusing well in classes in middle school. I was seen by doctors, and they said I have ADHD. And then, in high school, I started having some problems with my depression, anxiety, becoming more lonely and withdrawn. So I went to the doctors again, and they told me, ‘you have a depressive disorder, a panic disorder, and generalized anxiety disorder.’ Then I went to college, and I became more and more withdrawn and started experiencing some unusual sensations of my mind, kind of chattering and feeling like there were people inside my head talking to each other. At the same time, I had mood swings that were very severe in either direction: ecstatic and happy then irritable then, other times, deeply miserable and sad. So, the doctors said, ‘you have a bipolar disorder; it’s psychosis.’ Then time went on, and I got into treatment, had a couple of hospitalizations, and now, I only have the voices inside my head and the different people chatting with each other. I don’t have any mood swings. So I asked the doctors, what is my diagnosis, and they said, ‘you have schizophrenia.’ So basically, as you see, whenever I go to the doctors with my symptoms, they just give some Latin name to the same symptoms and call it a diagnosis. So, what is it that is new that you are going to tell me about my diagnosis? They say schizophrenia, which means split-brain and split-mind. But can you prove to me that I have a split brain? You know, can you do a test and show me that I have schizophrenia?”
That question totally humbled me. In this field, we have no idea how to label a given person’s illness correctly. If you had a medical problem, let’s say you had pneumonia. If you had cough and breathlessness and fever and you went to the doctors, they would do a chest X-ray and examine your sputum and find the pneumococcus, and they’ll say you have pneumococcal pneumonia. Or, if you had a seizure problem, they would do an EEG and look at some brainwave patterns to tell that you have a seizure disorder. Unfortunately, in psychiatry, we have not come to that point. We do not have a way of defining or naming the illness by what exactly it is. We go by collections of symptoms, and sometimes these symptoms are more like adjectives than reality. This is a very unsatisfactory state of affairs.
I was talking to my old and beloved friend, Larry Seidman, and he agreed with me; and he had been running this Consumer Advisory Board (CAB), so he asked me to join. So I started going to those meetings. The idea for a project that the CAB members could collaborate on with us came up. So I suggested this idea of a naming project.
Ruiz: You mentioned that, at times, it feels like the diagnoses are more like adjectives than reality. Could you say more about that?
Keshavan: When you say that a person is depressed or sad, it’s a description. It is not exactly an entity that you’re describing with clear-cut origins. By using terms like depressed or anxious, or psychotic, you’re basically describing a certain behavior. This, unfortunately, has an effect on the general public’s mind where it is applied in a more general way. So anybody acting unusual will become “schizophrenic,” and the term becomes an adjective in the lexicon of the general population.
When you see unusual behavior, you don’t say, “oh well, he’s an epileptic” or something like that; that is never used as an adjective. But “schizophrenic” is used as an adjective for many things, including in politics: “Congress is acting schizophrenic,” when they can’t make up their minds, for example.
Some years ago, we did a study where we looked at Twitter messages that carried the word “schizophrenia” alongside Twitter messages that had the term “cancer.” We cataloged and defined each of them based on whether they were used as adjectives or as nouns. A medical term like cancer was used as a noun more than 90% of the time and almost never as an adjective. Whereas with “schizophrenia,” it was all over the place and was used as an adjective and significant part of the time. Then we rated the messages as positive or negative. The majority of references to schizophrenia had a negative connotation. For medical terms, it was neutral.
There is this widespread use of psychiatric diagnostic terms as adjectives, attaching negative values to them.
Ruiz: Raquelle, what led you to this “renaming schizophrenia” project?
Mesholam-Gately: I’ve long been interested in reducing stigma for people with mental illness because I’ve seen the impacts of different labels on people.
The CAB started discussing developing a survey to rename schizophrenia with Dr. Keshavan, Dr. Seidman, and me around four to five years ago. We were appreciative of Dr. Keshavan’s expertise in renaming efforts worldwide, including his scholarly contributions in this area. The group had talked about the stigma associated with the word schizophrenia and how the name doesn’t accurately describe the condition. Then we all discussed the idea of renaming schizophrenia, as it was done in other countries, and how we might approach that in this country.
We thought that the next best step, in addition to a more thorough review of the literature, would be to survey a broad sample of community stakeholders about alternate names for schizophrenia. Stakeholders would include those with lived experience, family members, clinicians, researchers, and the general public.
We scoured the literature for alternate names proposed by researchers and new names for schizophrenia that have been used in other countries. One of our CAB members also proposed an alternate name that was used in our survey. In 2019, both the paper and online versions of our survey were born.
The survey included non-identifiable basic demographics, a question about whether schizophrenia should be renamed, and how stigmatizing the name is, ratings of proposed alternate names for schizophrenia. Then those ratings were repeated after neutral descriptions were provided for each alternate name. Finally, we asked survey respondents for comments and feedback, including any other potential alternate names.
Ruiz: Why are we ready now to ask this question about whether we should rename schizophrenia?
Keshavan: It’s an important question. Why is now a good time to ask this question? There are at least a couple of reasons for this.
First of all, in the last 20 to 30 years, we have learned more about the brain than ever before in the history of science. There is so much more knowledge than before that even behaviors that we currently do not fully understand in terms of their causation are now subject to the sophisticated tools that we now have in neuroscience, neuroimaging, electrophysiology, and so forth.
Secondly, there has been widespread recognition that the terms we use for psychiatric disorders, especially the diagnostic label of schizophrenia, are highly associated with stigmatizing attitudes. If you look around at the rest of the world, there are already other countries that have been bold enough to go ahead and make a change in the naming of this illness. In Japan, the term schizophrenia was replaced a few years ago by the term “integration disorder.” In Korea, the term schizophrenia was replaced by the term “attunement disorder.” In China, the term ‘disorders of thought and perception” was introduced to define schizophrenia. These are all coming from large movements by the patients and family populations themselves.
There have been some suggestions from the medical community. For example, one name that has been proposed by Jim van Os in the Netherlands is salience disorder. Another name that was suggested was dopamine dysregulation disorder. So, it’s not that the field has settled on a particular name. But, there seems to be increasing conviction that the current name is not satisfactory. So, we have made an effort to ask ourselves, is this an appropriate name? And should we be thinking of alternatives and so forth?
The third reason why now is a good time to ask this question is that the countries who have made this kind of an effort to change the names have shown that with a less stigmatizing name, such as “integrative disorder” or “attunement disorder,” doctors are more willing to talk to patients about their diagnosis and patients are more inclined to accept their diagnosis. Studies have also shown a reduction in stigma. So there are all these reasons why now is a good time to ask this question.
Why has psychiatry as an institution has been reluctant to confront this issue? At least in the United States, people, organizations, and institutions are resistant to change because changing a DSM code will create a huge amount of confusion for billing purposes, covering people’s health care through insurance, and so on. In addition, there are legal consequences of changing the name and so on. There is resistance because change is complicated. However, one has to make a beginning somewhere.
Ruiz: I’ve heard about some of these name changes that have happened, like in China and Japan, but I hadn’t heard that doctors are more likely to talk to their patients about their diagnosis, and patients are more likely to accept the diagnosis. What are your thoughts about why that is?
Keshavan: A term like “integrative disorder” does not have any connotation that there is a broken mind. When you say, someone has difficulties integrating their thoughts, that kind of explains what they are experiencing to the patients. But if you say they have a split mind, it doesn’t make sense.
Patients are more willing to understand and accept something that they can tune into and understand, as opposed to a label that doesn’t have any valid explanatory value. If I go to the doctor and he says I have hypertension or diabetes, and then I ask the doctor what is hypertension, they could say that hypertension means increased blood pressure. I can take your blood pressure and show you that you have a high blood pressure value. It immediately makes sense. Patients are more likely to accept a label that explains what they have rather than a term that gives them an adjective that they don’t agree with. For those reasons, it was not surprising that it did become the official name in Japan. It did not stick in other countries. Why might it stick now? I think we need to show research that it has value, and then it could stick.
Ruiz: Going back to the project itself, what are some of the names that were considered? What were the results of the survey?
Mesholam-Gately: There were nine alternate names in our survey, aside from schizophrenia. There was altered perception syndrome, attunement disorder, Bleuler’s syndrome, dysconnectivity syndrome, dopamine dysregulation syndrome, integration disorder, neuro-emotional integration disorder, psychosis spectrum syndrome, and salience syndrome.
We were able to recruit 1190 people to take our survey. The average age was about 45, and participants ranged from age 11 all the way to 87 years old. About two-thirds of the sample identified as female, and 25% indicated a history of psychosis. Of those with psychosis, most reported a schizophrenia spectrum diagnosis.
We saw a similar pattern reported by family members, with the majority reporting having relatives with a schizophrenia spectrum diagnosis. Of the stakeholder groups surveyed, respondents most frequently identified as family members of people with mental illness, followed by mental health providers, and then by those having lived experience of mental illness themselves. Psychologists comprised most mental health providers, though there was also meaningful representation from other types of clinicians like social workers, psychiatrists, and peer specialists.
First, the majority of survey respondents (74%) favored a name change for schizophrenia. Another important finding is that the majority of respondents found the name schizophrenia stigmatizing. On a Likert scale of 1-5, 75% of responses were either scored as a 4 (somewhat stigmatizing) or a 5 (very stigmatizing).
Of the proposed alternate names, altered perception syndrome emerged as the most favored term, followed by psychosis spectrum syndrome and neuro-emotional integration disorder. The least favored terms, aside from schizophrenia, were Bleuleur’s syndrome and salience syndrome.
I want to point out that altered perception syndrome is a term coined by a CAB member with lived experience of schizophrenia, whose name is Linda Larson. It’s the one term that has not been used as an alternative term for schizophrenia in the literature or any other country. It wasn’t just the highest-rated term across the entire sample but within each stakeholder group.
From our perspective, the popularity of this one term coined by someone with lived experience highlights how imperative it is to include the ideas and opinions of those living with a condition in all renaming efforts. That may indeed be what helps lead to a good alternate name for schizophrenia.
Apart from being non-stigmatizing, descriptive, and easy to understand, altered perception syndrome also has some face and construct validity as altered perception and information processing are core components of schizophrenia. They may accurately define the experience of those with the condition. More broadly, in the literature, mental health professionals will usually suggest that a successful name change should be clearly defined, neutral, easily understood, and illustrate the disorder’s core symptoms to increase accessibility and communicability by healthcare providers.
I also want to point out that, for the most part, after descriptions for all the alternative terms were given, support for renaming schizophrenia increased significantly, as did favorability ratings for the alternative terms. So, by describing the terms, they may have become more accessible and better understood. This may also suggest that a name change could best decrease stigma and increase knowledge of the disorder, accompanied by educating the public.
Ruiz: In thinking about this term, altered perception syndrome, what is it about this term that you think captures people’s experience with schizophrenia? Also, how might it not, what might it be missing?
Mesholam-Gately: The name itself is straightforward to understand. It is accessible for a lot of people; it has face and construct validity. Both altered perception and information processing are core components of schizophrenia, so they accurately describe what the experience might be like for those living the condition.
At least from my perspective, I think that might be what was most appealing about that particular name. In reviewing some of the comments, there was some feedback that it’s really easy to understand what that means.
Some potential limitations brought up in the comments sections were that maybe it is too simple and doesn’t describe all of the symptoms and that perhaps some people may have a different idea of what perception means. Those are the kinds of limitations that come to mind that respondents mentioned in this survey. But overall, across all stakeholder groups, it was the clear favorite term.
Keshavan: Another limitation is that perceptual disorders are quite non-specific. There are many conditions that we traditionally do not think of as belonging to the schizophrenia syndrome have perceptual problems. The diagnosis might become very broad and non-specific. That is one potential limitation.
Also, the term syndrome might be better than a disorder or a disease because it does not commit to this being one entity. It’s still a collection of symptoms that broadly come under a perceptual disturbance, but it could be three different disorders causing this, or even ten different disorders. We do not commit ourselves. That is where science has to guide us going forward.
Mesholam-Gately: That’s a good point about using the term syndrome to capture some of that heterogeneity in terms of symptom presentations. Another thing I’ll add is that altered perception syndrome may be too non-specific. We got some comments and feedback from another CAB member that maybe we should add “thought” to the label.
Keshavan: Yeah, in fact, the Chinese have already named it the disorder of thought and perception.
Ruiz: If this were to move forward, what can we imagine would be some of the advantages or disadvantages, or maybe just unintended effects, of changing the name?
Keshavan: One advantage would be an increased acceptance of the diagnosis by our patients. One of the major challenges that we have in treating these disorders is the lack of engagement and lack of adherence. A lot of the time, they stop treatment simply because they do not agree with the diagnosis. If we have a more acceptable name, that may increase the clinicians’ comfort level talking to the patients and the patients sharing their diagnosis and taking the appropriate steps to get better. So treatment engagement would be an important advantage.
There could be some disadvantages and some unintended consequences. Any label that we come up with could be misused in a broad way. There’s also the possibility that any new name might become stigmatized, so that cannot be ruled out. Stigma originates not just from a label but the illness itself in many ways–the behaviors generated by the illness and, unfortunately, some of the undesirable symptoms might themselves contribute to the stigma, even independent of the diagnostic label that we give.
The profession has the responsibility of developing better treatments so that the disease itself can get better so that the stigma attached to the names of those diseases can get better and better. Also, it is the profession’s responsibility to investigate and get to the bottom of what causes these disorders. We’re still barely scratching the surface there. Until we do that, some level of stigma will continue to be there with whatever name we give. It’s a matter of degree. A new name is not going to take the stigma away completely.
Mesholam-Gately: What I saw in terms of comments from survey respondents is very much aligned with what Dr. Keshavan was describing. Some advantages to a name change would be to reduce stigma, helplessness, and discrimination and better represent the condition’s characteristics. Schizophrenia doesn’t at all represent what the schizophrenia experience is like. It would avoid the metaphoric use of that term, stimulate public awareness, improve the image of the condition, facilitate communications between patients and mental health providers, and hopefully foster new scientific advances and research models.
One of the disadvantages was that simply changing the name alone would be ineffective. Any new name would become stigmatized over time, and people called for public education about the term. Other commenters called for more scientific research before accepting any name change. Others brought up concerns about diagnostic criteria confusion, loss of disability payments, or insurance coverage, and some were just not satisfied with any of the alternative terms. They didn’t feel like there was anything suitable, at least at this point.
Ruiz: Certainly, some places have attempted these public campaigns to de-stigmatize. I think in the UK, there was a little bit more of a documented effort. What thoughts do you have about how effective those are, and would that be enough?
Keshavan: One needs a multi-pronged effort to reduce stigma. There is what is called a personalized stigma (when one becomes stigmatized about one’s illness), and that requires the therapist to focus on integrating the concept of illness. This involves moving from defining oneself as a schizophrenic towards someone who has schizophrenia in addition to being a good son or a brother or a husband or a family member or a worker and so forth. There is a lot more to a given individual’s life than just having a label, and that kind of recovery-oriented care would be a very important aspect of reducing stigma.
Of course, at a professional level, we have to do everything to improve the knowledge base about this illness. Improving how we understand the underlying basis of this illness and will help reduce the stigma as well. Also, better treatments would naturally go towards improving stigma. For example, when treatment did not exist for tuberculosis, tuberculosis was a highly stigmatized disease, and stigma began to go away when treatments emerged—the same thing with cancer. When I was a kid, cancer was highly stigmatized, and it was a death sentence. Not anymore. People think of cancer more as often a chronic illness to be managed instead of diseases that necessarily always kill you.
There is a professional responsibility to develop better treatments and a better understanding and the clinical responsibility of working with patients in a recovery-oriented model to reduce internalized stigma. There’s also the third part, which is to educate the public so the public understanding of these illnesses will become more based on reality as opposed to some stereotyped viewpoint.
Ruiz: I attended a talk that both of you gave a few months ago where you presented this project. During that talk, you touched on how we might consider schizophrenia and psychosis more of a spectrum of experiences. So I’m wondering, how does our knowledge of schizophrenia as a spectrum of experiences inform renaming schizophrenia?
Keshavan: We have known for a long time that many disorders in psychiatry overlap with each other in how they present to us. The case example I gave you of the young lady diagnosed with bipolar disorder today and was diagnosed with schizophrenia in a year, and then it became schizoaffective disorder, shows that these disorders keep changing even within the same individual. Between diagnosticians, these conditions are almost used interchangeably.
Increasingly, the field is becoming aware that a number of traditions share commonalities while they also have differences. For example, many symptoms are similar between schizophrenia and bipolar disorder, but there are also distinct differences. Someone with psychotic bipolar disorder might be diagnosed with schizophrenia in some situations, which might change to bipolar in others. It’s not that the disease itself has changed, but the symptoms kind of overlap and change over time.
The field is moving toward defining these as disorders that blur into one another with some overlaps just like a rainbow spectrum: Red and orange and violet, they kind of run into each other with various shades in between. In the same way, psychotic disorders might contain multiple disorders, schizophrenia, schizophreniform, delusional disorder, brief psychotic disorder, schizoaffective disorder. They all have some commonalities, but they also have some differences, so it’s better to think of them as a spectrum as opposed to independent conditions. This is true of the rest of medicine as well.
We are beginning to understand that many genes that underlie schizophrenia are also shared with autism; many genes that we see linked to schizophrenia are also related to depression, personality disorders, etc. In nature, these diseases do not exist as water-tight, isolated compartments. They are continuous. So it is more accurate to describe them as a spectrum, just like autism spectrum disorder.
Interestingly, many journals, including the journal that I edit, called Schizophrenia Research, have now changed the name to the Journal of Schizophrenia Spectrum Disorder. So there are institutional changes that parallel the clinical understanding of the spectrum nature of these illnesses.
Mesholam-Gately: I’ll just say that the DSM-5 also revised the section on schizophrenia and other psychotic disorders to schizophrenia spectrum and other psychotic disorders, kind of along the same lines. There’s momentum for that change.
Ruiz: Some people might respond to you by saying that we should just remove the label entirely. For example, Jim van Os in 2016 suggested that schizophrenia is not a useful name, that it’s stigmatizing, doesn’t hang together as a construct, and doesn’t capture the diverse and heterogeneous experiences of the people it is applied to. What is your response to this, and then how does renaming address these concerns, if it does?
Keshavan: I know Jim van Os very well. Sometimes one needs to be provocative to make a point heard in the community. I guess that’s his point. However, that could be misunderstood. If you say that schizophrenia doesn’t exist, some people might think that this illness itself doesn’t exist, but the fact of the matter is that the illness doesn’t go away by taking the name away. So, we have to make sure that we don’t make up a sweeping statement or even suggest that schizophrenia does not exist. Schizophrenia, or whatever we call it, exists because there are people who suffer and people who come for help, and we take care of them, but we need a name. So, the term schizophrenia, Jim van Os is right, may not serve the purpose as much as it was originally intended, but we have to think of an appropriate alternative name. We have discussed the various alternatives. We don’t have a perfect one, but I think this is an incremental process.
Ruiz: Related to the field’s conceptualization of schizophrenia, how does the current narrative around schizophrenia as a lifelong illness impact patients, and how might altered perception syndrome, or another name, change service user and clinician expectations? Is that even an aim or expectation of the renaming?
Mesholam-Gately: As we suggested before, schizophrenia does little to accurately illustrate the underlying neurobiology or the symptoms experienced by those living with the condition, and it’s descriptively misleading in conveying that there is a single entity involved. The term has been adopted to describe any erratic volatile behavior and has become associated with violence, hopelessness, and desperation, which leads to distorted public perception, discrimination, and prejudice. Those attitudes negatively affect the lives of those living with the condition as higher levels of stigma are linked to less social interaction, lower levels of recovery, vocational functioning, and quality of life.
We know that some Asian countries have reported benefits after adopting new diagnostic terms for schizophrenia. For example, in Japan, the change from mind-split disease to integration disorder reduced negative associations with the diagnosis, attributions of dangerousness, and negative news coverage about the illness. It also increased the endorsement of a biopsychosocial cause. Likewise, South Korea’s adoption of attunement disorder decreased prejudice and stigma.
Following the name changes in both Japan and South Korea, more clinicians were willing to disclose schizophrenia diagnoses to patients. An increased number of patients were willing to seek out treatment regimens. We are hoping that similar results might emerge from a name change for schizophrenia within our country.
Ruiz: Unfortunately, there is also provider stigma in the US, where some providers have stigmatizing views of individuals with schizophrenia or psychosis. Is there the potential to reduce provider stigma in this name change as well?
Keshavan: You mentioned the current narrative around schizophrenia being a lifelong illness and asked how does it affect patients and so on. The conceptualization of schizophrenia as if it is one entity kind of reinforces the view, or perception, wrongly, among many patients, which are in many ways reinforced by clinicians, that this is an illness that is chronic and lifelong, and there is not much hope and so on.
Many psychiatrists that I know simply say that your son or daughter has to be ill chronically and may not be able to have a functional life and so forth, and this is unfortunate. People need to realize, and the name of a spectrum or a syndrome will do a better job at this, is that there are some subgroups of this illness, with this syndrome, that might actually recover and do much better. Some might have a recurrent condition, and a small number might have a chronic illness, but you can’t say that any given individual will necessarily have to have a lifelong illness. It’s not the case. We know this through extensive research. The outcome is highly variable. Some people have a pretty good outcome, and some do not. So that is something that educators and clinicians need to emphasize through talking to patients and families.
Mesholam-Gately: I think that we can provide evidence-based and effective care in a way that instills a sense of hope in recovery rather than simply informing individuals with the illness about their symptoms and prognosis and prescribing interventions.
Dr. Keshavan and I, along with two of our colleagues, Drs. Michelle Friedman-Yakoobian and Beshaun Davis recently submitted a paper related to this topic. Kesh (who is the master of acronyms) came up with another wonderful acronym for an approach to working with people with psychosis that integrates aspects of both psychoeducational and recovery-focused models. So, Kesh, would you like to share that acronym with everyone?
Keshavan: I’m good at coming up with acronyms but not very good at remembering them. The name I came up with is called INSPIRE. This basically captures the key principles that inform how to talk about the diagnosis with our patients, which is an art as well as a science. This is important in all of medicine, and there are similar principles that are outlined in talking about cancer or other kinds of major medical problems. In psychiatry, one has to be even more thoughtful because there is so much stigma.
The diagnostic discussions have to begin with the understanding that what the patient is coming to us with would is individualized because each person’s background and situation are different. So the way we present the information will have to be individualized.
Secondly, to the extent possible, we need to normalize the symptoms to reduce stigma rather than presenting them as bizarre or crazy. Instead of asking the question, do you have paranoid thoughts? Use terms such as “mistrustful,” which might be a more normalizing language. What terms we use will be very important in creating the kinds of attitudes about illnesses that develop down the road. So that is individualization and normalization.
Also, when we present the diagnostic formulation to our patients and their families, we need to be mindful of the setting and privacy. So doing it in the presence of all the key individuals, in a team-based manner, would be helpful. Of course, sometimes, you have to dispel the misconceptions they have and provide your own viewpoints. We have to be accurate in the information we provide. We have to make sure that as we provide diagnostic information, we have all the available information from medical records, lab tests, psychometric evaluations. We have to repeat and at the same time reassure, that’s very, very important, and instill a sense of hope. Finally, we have to provide and offer empathy, give them a strategy for the future, and give them the next steps– not just leave them with a diagnosis but also provide them with a plan of action.
Ruiz: What is your goal for the project, and where do you see this going in the future?
Mesholam-Gately: So, I think that we’re hoping that the findings from our project will support the growing momentum for renaming schizophrenia. It may be viewed as a pilot for a potential broader worldwide survey with a commitment from all parties to accept the results.
We do realize that renaming schizophrenia is a complex process. It requires careful deliberation and lots of effort, and it will need to be accompanied by public education campaigns, legislative changes, and other initiatives. This is a multi-pronged process. However, we believe that the revision is well worth the effort, considering all the potential benefits we mentioned in the long run.
Keshavan: Our observations echo similar observations from other studies in Europe and Asia, and we need to develop an international consensus. Within our research, we have some limitations. For example, we did not get enough input from African-Americans and other minority stakeholders. So we would like to be able to do this in a bigger, more systematic way, but what we have done so far provides some directions for the future.
MIA Reports are supported, in part, by a grant from the Open Society Foundations