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The Burdens of Schizophrenia

Schizophrenia is a common term used to describe a serious mental illness—but what is it, exactly? 

Schizophrenia is commonly understood as “hearing voices.” For some people, this may indeed be a symptom; however, schizophrenia is a complex condition that includes a vast array of symptoms, which are grouped into three basic categories known as symptom domains. 

The symptom domains can have wide-ranging impacts on a person. Imagine watching something on TV and thinking that the person on the screen is talking directly to you, or no longer having an interest in seeing your friends, or going to buy groceries and forgetting why you’re even there. Each of these examples represents a different symptom domain, which are categorized as positive, negative, and cognitive, respectively. 

Sensations of distorted reality, such as delusions and hallucinations (“hearing voices”) are part of the positive domain. Reductions or absences of normal emotion and behavior, such as not feeling pleasure, feeling like withdrawing, or feeling blunted, are part of the negative domain. And mental processes that aren’t functioning properly, such as difficulties with attention, concentration, and memory, are referred to as cognitive symptoms.

People living with schizophrenia experience each of these three symptom domains to varying degrees. In order to be diagnosed with schizophrenia, people must have experienced positive symptoms. About 60% of people living with schizophrenia also experience negative symptoms, and about 80% experience cognitive symptoms. Despite their prevalence, these lesser-known symptom domains have considerable impacts that are often underrecognized by healthcare providers, care partners, and even those living with schizophrenia. 

It can be difficult for people living without schizophrenia to fully recognize the lesser-known burdens of those who have it. Understanding these challenges can provide valuable insights to better address schizophrenia and help more patients in need. Boehringer Ingelheim has a long-term, generational commitment to redefine mental health care by supporting research into the barriers, challenges and opportunities within schizophrenia care with the aim to improve access to information, care, support and ultimately treatments for those living with this complex condition. Here, we will discuss studies and real-world evidence that show the considerable impacts, ranging from the personal to the societal, of schizophrenia’s lesser-known symptom domains.

The humanistic burden
The negative and cognitive symptoms that people living with schizophrenia experience create a profound humanistic burden, which leads to higher rates of comorbid conditions and greatly impacts quality of life—physically, mentally, and socially. Tellingly, mortality rates are higher for people living with schizophrenia, and those experiencing cognitive symptoms have a risk of early death that is more than twice that of those with healthy cognitive functioning.17,18 

Daily living and quality of life
For people living with schizophrenia, cognitive symptoms are most likely to decrease their quality of life by adverselyimpacting their daily living.8-10 Those affected find it difficult to manage and maintain relationships, and suffer reduced independence and lower employment rates, which leads to even greater burdens on their care partners.8-10 

A nationally representative, real-world evidence study of people living with schizophrenia explored the humanistic burden of cognitive symptoms (see page 1194 Abstract S254).11 The study found that cognitive symptoms are associated with worse mental and physical outcomes, lower health-related quality of life, and increased limitations in daily functioning. It also found that people experiencing cognitive symptoms tend to reach lower education levels and have higher unemployment and poverty rates when compared to those with healthy cognition.11

Negative symptoms of schizophrenia are also associated with impaired social functioning and a significant worsening of health and health-related quality of life.3-6 Recent findings have shown that negative symptoms are associated with a lower quality of life in terms of physical, psychological, social, environmental, and overall setting.3-6

Comorbid conditions
People living with schizophrenia who experience cognitive symptoms also encounter higher rates of comorbid conditions, such as being overweight, as well as general behavioral conditions.12,13 “Ourreal-world research of people living with schizophrenia treated by the US Department of Veterans Affairs* emphasizes the disparity of those with cognitive symptoms and comorbid conditions, as the study showed that those with cognitive symptoms tend to have higher rates of behavioral health conditions and high-risk behaviors,”13 said Scott Sutton, Pharm.D., Chair, University of South Carolina College of Pharmacy, Department of Clinical Pharmacy & Outcomes Sciences, co-author of the study. High-risk behaviors are defined as acts that increase the risk of disease or injury, which can subsequently lead to disability, death or social problems.29

Negative symptoms also lead to higher rates of behavioral comorbidities. In fact, new evidence shows that people experiencing negative symptoms have higher rates of other mental health disorders, such as anxiety and depression (see page 714 Abstract F106).7 

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Mortality gap 
When looking into the mortality gap of people living with schizophrenia, we collaborated with Sheppard Pratt and John Hopkins Medicine on real-world research to specifically evaluate whether cognitive symptoms were a risk factor.18 The study examined deaths from natural causes and noted wide-ranging risk factors, such as tobacco smoking, autoimmune disorders, being divorced/separated, and having lower cognitive function.18 “Of all these factors, the study identified that cognitive symptoms were the strongest risk factor of death from natural causes in people living with schizophrenia,18” says Faith Dickerson, PhD, MPH, senior psychologist at Sheppard Pratt, lead author of the study.

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*The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the US Department of Veterans Affairs, nor does mention of trade names, commercial products or organizations imply endorsement by the US government. This paper represents, in part, original research conducted using data from the Department of Veterans Affairs and is the result of work supported with resources and the use of facilities at the Dorn Research Institute, Columbia VA Health Care System, Columbia, South Carolina.

The clinical burden
Besides the humanistic burden that schizophrenia has on an affected person’s life, its negative and cognitive symptoms create a significant clinical burden, including lack of treatment adherence among patients and low knowledge of symptoms among healthcare professionals.

Impact in the clinic 
Underrecognized schizophrenia symptoms tend to reduce treatment adherence, resulting in poor treatment outcomes, which in turn, further reduce treatment adherence—a spiral that invariably leaves people living with schizophrenia inadequately treated.1,2 According to Christoph U. Correll, MD, professor at the Zucker School of Medicine at Hofstra/Northwell, who published a review exploring the topic, “People experiencing the negative and cognitive symptoms of schizophrenia often lack sufficient insight into their own symptoms, which tends to hinder them from seeking adequate care.”2 

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Indeed, people living with schizophrenia who display higher levels of cognition are more likely to achieve remission compared with those who experience cognitive symptoms—underscoring the fact that earlier intervention for these underrecognized symptoms has the potential to improve treatment outcomes.25

Compounding the issue, as the more well-known positive symptoms of schizophrenia are often their priority, healthcare providers may not always recognize and address negative and cognitive symptoms. Such symptoms may be difficult or subtle to detect during an office visit and can thus be overlooked until the positive symptoms of schizophrenia are stabilized.2 But this approach to treatment can present issues, because, as Dr. Correll says, “Despite being among the first symptoms individuals experience, underrecognized symptomsoften increase in severity as the schizophrenia illness  progresses.”2

The economic burden
On a larger scale, schizophrenia is associated with a significant economic burden: in 2019, it led to more than $343 billion in direct and indirect annual costs—and this number has remained high.14 And for those who experience negative and cognitive symptoms, the burden is even higher. 

Higher healthcare resource utilization and costs
Recent analyses show that negative and cognitive symptoms of schizophrenialead to higher utilization of healthcare resources, greater care partner burdens, and more costs—regardless of positive symptoms.15 According to a claims study, negative symptoms are associated with higher healthcare resource utilizations, including higher costs, more outpatient/inpatient visits, and longer hospitalizations16 Another study showed that cognitive symptoms are also associated with higher healthcare resource utilizations, as well as higher direct and indirect medical costs in terms of lost productivity (see page 57 Abstract F12).12

Policy barriers
Volumes of survey data, health records, and literature point to serious economic issues associated with treating schizophrenia, and many healthcare policies tend toincrease the economic burden for schizophrenia treatment. 

For instance, we considered how the intersection of digital innovation with health services has impacted mental health care.22 For people living with schizophrenia, access to affordable healthcare coverage is the main barrier to receiving adequate care. More adults with mental illnesses are found to be uninsured when compared to the adult population without mental illness, and 64% of uninsured adults don’t have health insurance because they can’t afford to be covered.19 High premiums and co-pays or needing to pay out of pocket for basic coverage can be unaffordable, particularly when specialists and frequent visits are needed. 

Shortages of mental health providers can also hinder treatment for people living with schizophrenia and other serious mental illnesses. And when people living with schizophrenia are treated, there is often a disconnect between the guidelines-recommended treatment they are intended to receive and the treatment they actually receive in clinical practice.26 

150 million americans

When telemedicine became popular during the COVID-19 pandemic, it became especially helpful as a means to provide mental health services. Indeed, 30% of all mental health claims were telehealth visits in 2021.20 Yet despite the increase in telehealth services, 150 million Americans live in federally designated areas of mental health professional shortage.21 For instance, for the largest Medicaid-managed care plans across four of the largest U.S. cities, only 17.8% of clinicians listed as in-network for Medicaid actually accepted Medicaid coverage, were reachable, and could provide a new patient psychiatric appointment.24

Due to the lack of parity between mental and physical insurance coverage, primary care physicians end up delivering the bulk of mental health care.23 However, these healthcare providers may not have the specialized training to effectively care for people living with mental health conditions, especially serious mental illness like schizophrenia. 

The greatest burden: the need for better treatments and approaches
The underrecognized burdens of schizophrenia detailed above underscores the critical need for effective treatments and policy approaches that can give the many living with this debilitating condition the care they deserve—so they can experience better outcomes and lead more fulfilling lives.

Boehringer Ingelheim’s work
At Boehringer Ingelheim, we are working to transform the treatment landscape for schizophrenia—beginning with our diligent research to understand the often-overlooked burdens this complex condition creates for those affected, healthcare systems, and the economy, and then following up by strongly advocating to change the overall approach to schizophrenia treatment so these burdens can be reduced.

To the point of advocacy, more tangible actions are needed at local and national stakeholder levels. These underrecognized burdens can be better addressed by working alongside patient advocate communities to support legislation for people living with serious mental illnesses. Learn more about legislation for mental illness from the National Alliance on Mental Illness and Mental Health America.

Furthermore, substantive findings such as the research highlighted above can provide the necessary insights and rationale to promote updated policies and payor systems regarding schizophrenia care. Then we can be better positioned to support people living with schizophrenia with treatments that can effectively address its negative and cognitive symptoms, which compounded with its positive symptoms make this condition so debilitating. As a leading research-driven biopharmaceutical company, Boehringer Ingelheim creates value through innovation in areas of high unmet medical need, including schizophrenia.

By potentially improving the negative and cognitive symptoms of schizophrenia, we hope to improve care for the people living with this debilitating condition, so they can live independently and reach their goals. 

To learn more about our continuing research in the schizophrenia space, see some of our research below: 

MPR-US-103353

References

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  2. Correll CU, Schooler NR. Negative Symptoms in Schizophrenia: A Review and Clinical Guide for Recognition, Assessment, and Treatment. Neuropsychiatr Dis Treat. 2020; 16: 519–534.
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  12. Choi BM, Singh T, Nili M, et al. Economic Burden of Cognitive Symptoms Among Patients with Schizophrenia Using the United States Medical Expenditure Panel Survey Data. 2024 Academy of Managed Care Pharmacy Annual Meeting.
  13. Nili M, Xiang P, Magagnoli J, et al. Patient Characteristics and Healthcare Resource Utilization of Cognitive Symptoms among Patients with Schizophrenia in the Veterans Affairs Administration System. International Society for Pharmacoeconomics and Outcomes 2024 Conference.
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