ROBERT HEINSSEN: May is National Mental Health Awareness Month. For our discussion today, we’re focusing on understanding schizophrenia. I am Dr. Robert Heinssen, senior adviser for learning healthcare research at the National Institute of Mental health, or NIMH for short. At NIMH, I’ve worked on key initiatives focused on early-risk states for psychosis, first-episode psychosis, and the rapid implementation of evidence-based services in real-world settings. I’ll now turn it over to my co-host to introduce herself.
Sarah E. MORRIS: Thank you, Dr. Heinssen, and thank you to everyone for your patience as we were working at our technical difficulties in getting started. I’m Dr. Sarah Morris, chief of the adult psychopathology and psychosocial interventions research branch here at NIMH. My branch supports research that examines how brain processes like emotion, cognition, and motivation contribute to mental illnesses in adults. Schizophrenia is a serious mental illness that can have significant health, social, and economic impacts. And it is one of the top 15 leading causes of disability worldwide. During the next half hour together, Dr. Heinssen and I will lead a discussion on the signs and symptoms of schizophrenia, risk factors, treatments, and the latest NIMH-supported research in the area of schizophrenia. We’ll take the last 10 minutes or so to take some of your questions, so please enter them as comments under the live stream post below, and we’ll do our best to answer as many as we can before the end of our discussion. It’s important to note that during our discussion today, we can’t provide specific medical advice or referrals. We do encourage you to– if you need help finding a provider, please visit nimh.nih.gov/findhelp. And our team will drop that link into the chat below. If you or someone you know is in crisis, please call or text the 9-8-8 suicide and crisis lifeline at 9-8-8. Visit 988lifeline.org for more help and information. The lifeline provides 24/7 free and confidential support for people in distress for prevention and crisis resources for you and your loved ones and best practices for professionals in the United States.
ROBERT HEINSSEN: Okay. Let’s get into our discussion. We’ll start by reviewing some of the key characteristics of schizophrenia. So schizophrenia is a serious mental illness that affects how a person thinks, feels, and behaves. People with schizophrenia may seem like they have lost touch with reality, which can be distressing for them and for their family and friends. The symptoms can make it difficult to participate in usual everyday activities, like going to school or work or spending time with friends. Schizophrenia is rare in children, and most people with schizophrenia are usually diagnosed between the ages of 16 and 30, after the first episode of psychosis. However, research shows that gradual changes in thinking, mood, and social functioning often appear weeks or months before the first episode of psychosis. Whenever the symptoms of schizophrenia do occur, it is important to recognize them and seek help as early as possible. We’ll talk about treatment in a bit, but I want to emphasize at the start that mental health treatments work. The good news is that with appropriate treatment, people with schizophrenia can manage their lives, overcome challenges, and lead productive and meaningful lives. So let’s spend a moment considering the three types of symptoms that commonly occur in schizophrenia. Psychotic symptoms refer to changes in the way that a person thinks, acts, and experiences the world. These symptoms often include hallucinations, such as hearing voices or seeing things that others don’t. And delusional beliefs, including paranoid ideas.
ROBERT HEINSSEN: People with psychotic symptoms may lose a shared sense of reality with others and experience the world in a distorted way. Negative symptoms refer to a loss of interest or enjoyment in daily activities or withdrawal from social life. People experiencing negative symptoms sometimes have difficulty showing emotions, or they experience a loss of motivation or sense of purpose. Understandably, negative symptoms can create difficulties in many areas of functioning. And finally, cognitive symptoms refer to problems in attention, concentration, and memory. These symptoms can make it hard for a person to follow a conversation, remember appointments, or learn new things. To learn more about the symptoms of schizophrenia, please visit the NIMH web page, nimh.nih.gov/schizophrenia. Our team will drop this link into the Facebook comments for viewers who desire more information and wish to learn more about the core characteristics of schizophrenia. Sarah?
SARAH E. MORRIS: Yeah. Let’s talk for a minute about risk factors. Several factors may contribute to a person’s chances of developing schizophrenia, including genetic factors, studies suggest that many different genes may increase a person’s chances of developing schizophrenia, but that no single gene causes the disorder by itself. In a recent study, funded in part by NIMH, researchers aimed to map the genetic landscape of schizophrenia in the brain. The study was led by researchers at the Lieber Institute for Brain Development and the Johns Hopkins University School of Medicine. Their analyses showed altered expression in 2,700 genes in a specified region of the brain of people with schizophrenia, several times more than the number of genes found with altered expression in previous studies focusing on other brain regions. These included both genes identified in prior studies and new genes linked to schizophrenia for the first time. Other risk factors are related to the environment. Research suggests that a combination of genetic factors and aspects of a person’s environment and life experience may also play a role in the development of schizophrenia. These environmental factors may include living in poverty, stressful or dangerous surroundings, and exposure to viruses or nutritional problems before birth. In addition, brain structure and function plays a role. Research shows that people with schizophrenia may be more likely to have differences in the size of certain brain areas and in connections between brain areas. Some of these brain differences may develop before birth. These brain differences are not specific enough that an individual can be diagnosed with schizophrenia on the basis of a brain scan or an MRI, but researchers are working to better understand how brain structure and function may relate to schizophrenia.
ROBERT HEINSSEN: So now we’ll turn our attention to treatment and therapies. Schizophrenia symptoms can differ from person to person. So current treatments are personalized to help people manage their symptoms, improve day-to-day functioning, and achieve personal life goals, such as completing an education, pursuing a career, and having fulfilling relationships. We’ll briefly consider medications, psychological, and rehabilitation treatments, supportive intervention for family members, and coordinated treatment for persons experiencing a first episode of psychosis. So to start, antipsychotic medications can help make psychotic symptoms less intense and less frequent. These medications are usually taken every day in a pill or liquid form. Some antipsychotic medications are given as injections once or twice a month. It’s important to know that a person may need to try more than one antipsychotic medication before finding the one that works best for them. If a person’s symptoms do not improve after two antipsychotic medication trials, they may be prescribed clozapine, a medicine that often works for schizophrenia symptoms that do not respond to first-line antipsychotic medications. People respond to antipsychotic medications in different ways. It’s important to report any side effects to a healthcare provider and then to work together to find the type and dose of medication that works best for each individual. You can find the latest information on warnings, patient medication guides, or newly approved medications on the U.S. Food and Drug Administration website. That’s the FDA website.
ROBERT HEINSSEN: Psychological and rehabilitation treatments help people to develop personal recovery goals, find practical solutions to everyday challenges, and manage symptoms while attending school, working, or maintaining their relationships. These treatments are often used together with antipsychotic medication. People who participate in regular psychosocial treatment are less likely to have symptoms reoccur or to require hospital care. Examples of psychological treatment include cognitive behavioral therapy, behavioral skills training, supported employment, and cognitive remediation interventions. You can find information about psychological treatments by visiting the NIMH web page, nimh.nih.gov/psychotherapies. Our team will drop this link into the Facebook comments for viewers who desire more information and wish to learn more about these aspects of comprehensive treatment. Family education and support is very, very important in the treatment of schizophrenia. Educational programs can help family and friends to learn about the symptoms of schizophrenia, the treatment options available, and strategies for helping loved ones with the illness. These programs can help friends and family members manage their own distress, boost their coping skills, and strengthen their ability to provide support to their ill relative. For more information about family-based services in your area, you can visit the family education and support groups page on the National Alliance on Mental Illness website.
ROBERT HEINSSEN: Coordinated specialty care is a program that was developed– is a recovery-focused program, developed for people with first-episode psychosis and early stage of schizophrenia. Health professionals and specialists work together as a team to provide coordinated specialty care, which includes medication, psychotherapy, employment, and education support, and family education and support. Compared with typical care, coordinated specialty care is more effective at reducing symptoms, improving a person’s quality of life, and increasing involvement in work or school. There are now over 380 coordinated specialty care programs nationwide that offer recovery-oriented treatment for first-episode psychosis. The Substance Abuse and Mental Health Services Administration hosts an early serious mental illness treatment locator on their website that provides information about coordinated specialty care programs in all 50 states, the District of Columbia, Puerto Rico, and several territories. The link to the locator is shared in the comments. Another way to obtain information about coordinated specialty care is to visit the website of the NIMH-supported early psychosis intervention network or EPINET. In 2019, NIMH launched EPINET as a broad research initiative that aims to enhance practices for the effective delivery of coordinated specialty care for early psychosis. EPINET continues to expand its reach and now has 8 regional hubs in 17 states with more than 100 community clinics that provide coordinated specialty care. It can be difficult to know how to help someone who’s experiencing psychosis.
ROBERT HEINSSEN: But here are a few things that you can do. First, help them get treatment as early as possible and then encourage them to stay in treatment. Remember that their beliefs or their hallucinations seem very, very real to them. You can be respectful, supportive, and kind but at the same time, without tolerating dangerous or inappropriate behavior. You can look for support groups and family education programs, such as those offered by the National Alliance of Mental Illness. So that’s where we are currently with treatment. And, Sarah, I believe you’re going to tell us about some future possibilities.
Sarah E. MORRIS: Yeah. So I’m going to talk first about the AMP Schizophrenia project. So in translational science, we’re building on findings from basic science to develop and improve interventions for people with mental illnesses like schizophrenia. Last year marked the launch of participant recruitment for the Accelerating Medicines Partnership® (AMP®) in Schizophrenia or AMP Schizophrenia for short. This partnership reflects an unprecedented large-scale effort uniting federal agencies and private and nonprofit organizations with the goal of improving outcomes for people at elevated risk for schizophrenia. Currently, this program includes a coordination center and two research networks with 42 study sites across the globe. As I mentioned, study sites began enrolling the first wave of participants last year, and enrollment is ongoing. As of May 2nd, of this year, 476 participants across 32 sites have completed the consent process. Of those participants, 322 have also completed screening and are in the baseline phase or months 1 through 6 of this 24-month study. In the spring of 2022, we also saw the launch of a dedicated AMP Schizophrenia website, which serves as a comprehensive information hub for potential study participants and researchers, interested in joining the study. As far as other research studies, researchers at NIMH and around the country conduct many clinical research studies with patients and healthy volunteers. We have new and better treatment options today because of what those clinical trials uncovered over the years. Please talk to your healthcare provider about clinical trials, their benefits and risks, and whether participating in one is right for you. To learn more or find studies on schizophrenia across the country, visit clinicaltrials.gov, and you’ll see a list of clinical trials, including many studies funded by NIH and instructions to volunteering as a study participant. To learn more about studies being conducted on schizophrenia on the NIH campus in Bethesda, Maryland, visit nimh.nih.gov/joinastudy.
ROBERT HEINSSEN: Okay. Thank you, Dr. Morris. So now I think it’s a good time to start taking your questions. A few of them have appeared, and we’ll take them in turn. Dr. Morris, would you care to take the first question, and then I’ll take number two?
SARAH E. MORRIS: Yes. So the first question is, “Does trauma cause schizophrenia?” And I would encourage a careful consideration of this question and this answer. There’s not a specific relationship between trauma and schizophrenia. We know that the mental health sequelae of trauma can take many forms, including many different kinds of symptoms. But in some people, especially those who may be at elevated risk of psychosis due to genetic factors or brain differences, trauma during the lifetime or prenatally is associated with elevated risk of schizophrenia. But of course, that’s not to say that everybody who experiences a trauma is going to go on to develop schizophrenia. Those relationships are simply more complicated than that.
ROBERT HEINSSEN: Okay. Thank you. So the second question we received, “What are some effective methods for assisting in the taking of the medications for a person who has severe distrust of pills and injections?” So an innovation that has been developed over the last decade or so is the introduction of an approach called shared decision-making in the relationship between a person with schizophrenia and their care provider, and specifically their psychiatrist. And in shared decision-making, there’s a collaborative process of understanding the difficulties that a person is experiencing and the range of treatment options that are available to help them. There’s a real collaborative conversation about what interventions may work and, usually, discussions about many experiments that can be tried about implementing a particular treatment over a period of time, seeing how that treatment helps the individual, and then making decisions about whether to continue, adjust, or try something new. In this framework, very often people can reconceptualize medication as an aide that will help them to achieve some of their most important life goals. And if this conversation occurs, it often can be very helpful to establish a level of trust where the person feels that they can try medications as a strategy to help in their overall plan for recovery. So shared decision-making has been described in the literature and is mentioned in many publications and even YouTube videos that describe this approach and its place in a comprehensive treatment plan for schizophrenia.
SARAH E. MORRIS: Bob, I can jump in and answer question number four.
ROBERT HEINSSEN: Sure.
SARAH E. MORRIS: So this next question is, “Are there any early signs or symptoms that family members may notice or the patient may experience themselves before having their first psychotic event?” And research has identified several different behaviors or experiences that can be observed prior to the onset of psychosis. Now, not everybody who experiences psychosis experiences what we call prodromal symptoms, but many do. So some of those signs and symptoms include disruptions in sleep, disruptions in communication where an individual’s speech might become very vague or tangential, lapses in logic, for example. And they may experience what we would call sub-threshold psychotic symptoms where they may hear things or see things or have unusual ideas, but they don’t have the, what we call, delusional conviction, the certainty that what they’re experiencing is real. So the intensity of that psychotic experience isn’t there yet, but they may be having unusual auditory experiences, seeing things that aren’t there, and maybe starting to have unusual ideas about what might be causing those experiences. So those are some of the symptoms that may start to appear as someone is progressing toward a psychotic episode.
ROBERT HEINSSEN: Okay. A very interesting and important question, “There continues to be a lack of coordination of care between health and behavioral treatment, especially for people who are older adults. What is being done to improve this disconnection?” So we have some evidence first from some research about strategies that can help care providers in primary-care settings to be more aware of assessing some of the risk factors for cardiovascular disease, respiratory illness, metabolic difficulties in persons with serious mental illness. The mental health research network, which is located primarily in primary care settings developed and tested such a tool and found that it was well-accepted by primary care providers. It led to better management of physical illness among people with schizophrenia and other psychotic disorders and now has been broadly implemented in that healthcare system. Within the federal government, it’s widely recognized that this disconnect between behavioral healthcare and physical healthcare is a real liability for people with serious mental illness. So new programs, such as the certified community behavioral health clinics that are sponsored by the Center for Medicare and Medicaid Services and the Substance Abuse and Mental Health Services Administration emphasize close coordination between behavioral treatment providers and primary care providers so that the physical illness needs of people with serious mental illness are in fact taken into account, meaning that they receive the appropriate screening for mental health conditions when the screens are positive, they’re referred to the appropriate medical care, and that they achieve that care in a timely fashion. So these are some of the ways in which research on ways to better integrate these two modalities of care are being implemented in real-world settings and evidence that the federal government is taking steps to push that integration along so that it becomes the standard of care for people with serious mental illness.
SARAH E. MORRIS: Thanks, Bob. I can take the next question. The question is, “Can it be beneficial to have an MRI or a brain scan?” And those kinds of brain scans are not the typical standard of care for the purpose of diagnosing schizophrenia. The brain differences that appear in studies comparing brain structure and function in schizophrenia in comparison to healthy individuals are not– those differences aren’t large enough to pick up on any one individual brain scan. However, it may be a good idea, and a doctor may decide that it’s a good idea, to have a brain scan in order to rule out other possible causes of psychotic symptoms, such as a brain tumor or some kind of lesion or other degenerative neurological disorder.
ROBERT HEINSSEN: Okay. Following the earlier question, a participant asked, “Does schizophrenia have any comorbidities that you typically see, mental-health- or physical-wise?” Well, it’s known that there are a number of common comorbidities that people with schizophrenia experience. Substance use and alcohol misuse are often very high among people with schizophrenia. Sometimes taking those substances is a way of self-medicating or finding trying to find an alternate way of achieving some resolution of the distress that they feel from their symptoms. But taking substances is not a good idea for people with schizophrenia, and helping them to leave those behind for a more healthy lifestyle is a principal goal of treatment. On the physical illness side, antipsychotic medications, some of them have a side effect of causing weight gain, which can be managed through lifestyle and diet. But until it’s managed, it can create obesity, which can lead to difficulties related to cardiovascular risk factors, heart disease. The fact that many, many people with schizophrenia have excessive use of tobacco and tobacco products makes them at higher risk for respiratory illnesses, including lung cancer. So all of these things are a target for treatment.
ROBERT HEINSSEN: So careful monitoring of antipsychotic medications and adjusting them and adding interventions that help with diet, exercise, or a way of addressing the weight-gain problems, integration of behavioral care and physical healthcare, that I already mentioned, is another way of addressing these comorbidities. And in the certified community behavioral health clinics that I mentioned, one of the essential characteristics of those programs is offering integrated treatment for people who have substance use and serious mental illness conditions. So those programs are excellent resources for finding treatment teams that are equipped to dealing with both aspects of a person’s psychiatric and substance abuse difficulties. There are over 500 certified community behavioral health clinics across the nation. And if you google them, you’ll be able to find a Google-certified community behavioral health clinics. You’ll be able to find ample instructions and guidance about how to get in contact with one that’s closest to your area.
SARAH E. MORRIS: Terrific. Thanks, Bob. I can take the next question, which is, “Can schizophrenia happen at all ages?” And if you look at the distribution of ages at which schizophrenia occurs, it most commonly has its onset in late adolescence and early adulthood. The pattern in women shifted slightly older, but it is possible for schizophrenia to have an onset in childhood. However, that is very rare. In older adults, it is also possible for schizophrenia to develop in older adulthood. However, at that age, it’s important to rule out other possible contributors and causes to psychotic symptoms. So generally, early adulthood, late adolescence, but yes, it is possible older and younger ages. And I think we are at the end of our time today. So thank you all very much for joining us today for this important discussion. We hope that the information was useful. Please reach out for help if you need it. As a reminder, if you or someone you know is in crisis, please call or text the 9-8-8 suicide and crisis lifeline at 9-8-8. Visit 988lifeline.org for more help and information. A great place to start finding help is nimh.nih.gov/findhelp. For more information about schizophrenia, please visit nimh.nih.gov/schizophrenia.
ROBERT HEINSSEN: Thank you all very much for your interest and spending your time with us today, and thank you, Dr. Morris.
SARAH E. MORRIS: Thank you, Dr. Heinssen.