The statistics are striking.

Numerous studies over decades have shown that Black Americans are diagnosed at higher rates of schizophrenia than White Americans. In a 2018 analysis of data from 52 different studies, researchers found that Black Americans are 2.4 times more likely to be diagnosed with schizophrenia. Other studies have shown that Blacks are diagnosed at three and four times the rate of white people.

Why is this?

“The answer is not entirely clear because it’s such a complex issue,” says Tiffany Herlands, PsyD, clinical director of the Lieber Clinic, which specializes in treating psychotic disorders and is part of the Columbia Psychiatry network.

Arundati Nagendra, PhD—a co-author of the meta-analysis—researches racism and psychosis at Massachusetts General Hospital and Harvard Medical School and points to two reasons: an assessment bias during the diagnostic process, and Black people experiencing more environmental risk factors for the development of schizophrenia.

More research is needed Nagendra says adding “there are some ongoing studies that will start to answer these questions a little more clearly.”

Why is Schizophrenia Difficult to Diagnose?

Schizophrenia is a severe chronic mental illness that interferes with the ability to think clearly, relate to others, and manage emotions effectively, according to Diana Samuel, MD, a psychiatrist at Columbia University Irving Medical Center.

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Less than 1% of Americans have schizophrenia, which affects 0.25% to 0.64% of the population, according to the National Institute of Mental Health (NIMH). In males, symptoms typically appear in the late teen years to the early twenties; females tend to experience symptoms later—in their early twenties to early thirties. Those with a family history of psychiatric illness have a higher risk of developing schizophrenia or other serious mental health conditions.

Symptoms can include delusions, hallucinations, and disorganized speech as well as emotions that seem very flat, a lack of motivation and interest in activities, difficulty sustaining relationships, and making decisions, Dr. Samuels adds. “Psychosis occurs more often in first-degree relatives of people with psychotic disorders,” says Herlands.

In the early stages, schizophrenia is difficult to diagnose. “It might first present with changes in socialization, grades, problems with sleep, irritability—kind of non-specific symptoms that could be a variety of things including depression or psychosis (conditions that affect the mind where there has been some loss of contact with reality),” Dr. Samuel explains.

Schizophrenia usually includes cognitive impairment according to Herlands. “At the onset of this disorder, and many times preceding it, people can have a loss of their cognitive abilities that help us to engage in everyday activity,” she explains. “You may not be able to pay attention and may struggle to follow conversations, or forget what you meant to do,” Herlands continues. “You may [have difficulty] solving everyday problems, too. Like ‘the train is late, I’m late for work and I don’t know how to problem-solve that. So, I’ll just go home instead of calling my boss and finding out another way to get to work’”.

If left untreated, schizophrenia usually worsens a person’s life situation. But comprehensive treatment involving anti-psychotic medications and specialized therapy is quite effective in treating the disorder and often helps people live normal lives.

What’s the Relationship Between Race and Schizophrenia?

Scientists say schizophrenia is only partially genetically determined. Environmental factors can also make someone vulnerable. “Many genes have to have changes to sort of set the stage,” Herlands says explaining that within a family lineage there will be family members who don’t manifest the illness and others who do.

Trauma And Schizophrenia

What brings rise to this vulnerability? “When you think of early life insults and overall increased trauma and stress and insufficient healthcare, you’re increasing the likelihood for stress-related illnesses to be triggered over time in predisposed individuals,” she says.

“Marginalization and trauma are known risk factors for developing schizophrenia,” Nagendra adds, citing a May 2021 study published in the American Journal of Psychiatry. “Black Americans are marginalized and experience more trauma than white Americans because of systemic and interpersonal racism, including police brutality, which may contribute to the higher observed rates of schizophrenia.”

“While the role of racism in schizophrenia has not been studied nearly as much as it should have, it can be a factor in developing the condition,” Nagendra says.

Could There Be Racial Disparities in The Diagnosis of Schizophrenia?

Another unfortunate reality: Some symptoms of schizophrenia, such as psychosis, overlap other mental health conditions including bipolar disorder.

“When people present with psychotic symptoms, the clinician’s obligation is to first eliminate all other possible causes of symptoms before concluding that schizophrenia is correct since schizophrenia is a diagnosis of exclusion,” says Stephen Strakowsi, MD, also a co-author of the 2018 review article. A psychiatrist, he is also Vice Dean of Research and Associate Vice President of Regional Mental Health at Dell Medical School at the University of Texas at Austin.

“But what we’ve learned in our work is that when African Americans show up for evaluation, their psychotic symptoms are overemphasized,” he says, with less of an emphasis on mood disorders,  thus skewing the diagnosis to schizophrenia.

“You have to go through excluding all other causes of psychosis, from substance use to trauma, to mood disorders and depression and kind of eliminate them,” Herlands adds. “So, if you’re undervaluing and not adequately assessing the presence of these mood symptoms, it can be easy to go to the next rung on the diagnostic ladder and over-diagnose schizophrenia.”

Severe depression is sometimes overlooked as well.

Herlands points to a Rutgers study that shows Black Americans with severe depression are more likely to be misdiagnosed as having schizophrenia, with its authors suggesting that racial bias—whether conscious or subconscious—is a factor in the diagnosis of schizophrenia.

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According to a 2019 article in Rutgers Today, other factors cited by the researchers include genetics, poverty, and discrimination, as well as symptoms caused by infections and malnutrition early in life.

“Individuals from a racial minority group also might feel hopelessness or mistrust when being assessed by someone from a racial majority group, which could affect how they act and how the clinician interprets symptoms,” said one of that study’s co-authors Michael Gara, then a professor of psychiatry at Rutgers Robert Wood Johnson Medical School in an interview with Rutgers Today.

Herlands says the Rutgers study points to the failures of clinicians to adequately “account for and equally weigh mood symptoms like depression and mania when diagnosing Black patients in the presence of mood symptoms and psychosis, which can often present together.”

“Clinicians were found to overly emphasize or weigh the psychotic symptoms,” Herlands continues, “and undervalue mood symptoms while making the differential diagnosis, resulting in over-diagnosis of schizophrenia.”

That disparity extends to long-term care as well, Nagendra adds. “The mental health system is less successful at engaging Black Americans, leading [them and family members] to leave treatment more often than white Americans.”

“If we can connect people to treatment early,” says Herlands, “providing personalized, comprehensive treatment minimizes the impact of the illness such as the social withdrawal, interruption in education, family stress, cognitive problems, loss of self-esteem and hopelessness.”

A Possible Solution for Racial Disparities in Schizophrenia Misdiagnosis

What can be done to improve diagnostic accuracy? Dr. Strakowski believes a more deliberate diagnostic process through greater use of the structured clinical interview for DSM disorders could help minimize misdiagnoses.

“If you forced clinicians to follow a [consistent clinical] interview pattern, much of the bias goes away,” he says. “Not all of it, but much of it.”

In addition, a Black person being assessed by a white practitioner may have an impact on a patient’s behavior during the interview. “So, for example, a person can be skittish or seem reluctant to share details and that can be misinterpreted as paranoia,” Herlands explains.

Nagendra says having a practitioner of the same racial group as a patient could possibly reduce bias and lead to more accurate diagnoses. “Research shows that we are better at reading and interpreting emotions and the faces of the people who belong to the same racial group as us,” she says adding that some research suggests white and Black clinicians weigh different factors differently when they diagnose schizophrenia. “Interestingly, however, the authors of the study noted that Black and white clinicians still diagnosed schizophrenia at comparable rates.”

The Very Human Cost of Misdiagnosis

Beyond diagnosis, we also need to talk about delays in care.

Dr. Strakowski says that African Americans have also been “appropriately wary” of receiving care at medical establishments, “which are predominantly white”—a delay that has led to an exacerbation of symptoms.

“We think they also show up sicker because it takes longer to get them into care,” he explains. “So, the symptoms are more dramatic and it can cause clinicians to not be as deliberate in their evaluations.”

“It’s a disappointing problem, we’ve been working on for a long time. We’re hoping [this] changes as society tries to change how it treats people,” Dr. Strakowski says, “because in the United States we’re just not treating people fairly if they are not white people.”

There are multiple downsides for misdiagnosis, too: patients not receiving the proper medication and therapy to treat their actual condition. While the medications used to treat schizophrenia (atypical and typical neuroleptics) are highly effective in treating psychosis, they can “cause metabolic changes and weight gain,” says Herlands. “And that can have serious life and health consequences, particularly in an already health underserved population. If you’re adding a medicine, which may not be the first-line medication for your diagnosis, you’re unnecessarily burdening someone’s system.”

Dr. Strakowski notes that if bipolar disorder is misdiagnosed as schizophrenia, the patient may not receive a needed mood stabilizer, like lithium, “which could be a godsend to someone with bipolar disorder.”

Additionally, a misdiagnosis of schizophrenia can lead to lifelong stigma as well as improper therapy and social supports.

“There’s still lots of stigma in society around schizophrenia, which can impact hopefulness,” says Herlands. “This is a lot of the work that I do, to impart hopefulness by providing psychoeducation that schizophrenia and psychotic disorders are treatable. People diagnosed with these disorders can live meaningful and productive lives.”

“But I still think because of stigma and lack of psychoeducation, how a person and their family think about their future and their hopefulness can be very different if you’re diagnosed with schizophrenia versus major depressive disorder.”

Improving Treatment for Schizophrenia in Black Individuals

For patients of any race, says Herlands, “providing personalized, comprehensive treatment minimizes the impact of the illness such as the social withdrawal, interruption in education, family stress, cognitive problems, loss of self-esteem and hopelessness,” says Herlands

Connecting people to culturally-tailored care, says Nagendra, is also important. For Black Americans, that may include addressing treatment barriers with the help of religious communities and churches and developing treatments that openly focus on the importance of coping with racism.

“This work for Black Americans and schizophrenia is in its infancy—we still need to conduct studies in which we directly ask those from Black communities in the US what they need, rather than assuming we know,” Nagendra says. “I am hopeful we will see this in the coming years.”

Many studies and efforts are already underway. Ongoing studies, Nagendra says, encompass how discrimination can predict the development of psychosis in high-risk individuals, how assessments of paranoia may pathologize healthy and understandable wariness in Black clients, and how indices of systemic racism (i.e., income inequality, neighborhood segregation) may be associated with psychotic symptoms.

Resources for People with Schizophrenia

While that work continues, here are some resources for Black Americans living with schizophrenia and their caregivers, too.

  • Nagendra suggests the Oregon-based Early Assessment Support Alliance. The group has a national directory that can be used to find early intervention services all over the country.
  • The Lieber Clinic offers telehealth. Herlands also suggests OnTrackNY, a resource for adolescents and young adults experiencing psychosis.
  • Dr. Strakowski encourages patients and family members to join the National Alliance on Mental Illness (NAMI), a grassroots education and support group. “Take advantage of anything available,” he says. “And if you’re unhappy with your care providers, find different ones.” He recommends starting with a university psychiatry department “because they tend to be plugged into a well-established mental health center that is connected to different specialists, able to get the information they need and just keep advocating for care.”

Finally, it’s important to remember that connecting people who are struggling to treatment early is key to thriving with any mental illness.

 

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Last Updated: May 17, 2021