Schizophrenia is a widely understood and misunderstood mental health condition. Many mental health professionals believe they ‘know’ what schizophrenia is. Ideas ‘about delusions and hallucinations’ just scratch the surface, as will be seen when ICD-11 criteria are explored.
Table of Contents
- Common lay perceptons rebutted
- Demographics
- Definition of schizophrenia
- How serious is schizophrenia
- Treatment
- Treatment-resistant schizophrenia
- Conclusion
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Millions of pages of journals and books have been written on this topic over the last 30 years. This article could not possibly condense all the important aspects of schizophrenia to everyone’s satisfaction. Between higher specialist training and into the first 5 years of work as a consultant the issues for the author were:
- Diagnosis.
- Medicatons – and less focus on psychosocial care.
- Admission to hospital.
- Risk management.
Twenty-odd years later, while those things still are important, there are bigger issues to focus on in the topic of schizophrenia:
- Failures to provide care: medical, psychological and social.
- Team work in care delivery.
- Physical health problems: obesity, arthritis, metabolic disorders, endocrine disorders, cancer.
- Chronic disability.
- Economic burden.
Common lay perceptons rebutted
Split personality: This is perhaps the most prevalent misconception often promoted on social media. Schizophrenia involves disruptions in thinking, perception, and emotions, but not a fragmentation of identity into distinct personalities. Schizophrenia has nothing at all to do with ‘split-personality’, which is not even a diagnosis in any recognised diagnostic manual. [Caution: the existence of multiple personality in DSM-111 and dissociative identity disorders in ICD-11 and DSM-V is irrelevant to schizophrenia]
Violence and aggression: People with schizophrenia are often unfairly portrayed as violent and dangerous. While some individuals with schizophrenia may experience agitation or paranoia, the vast majority are not violent. In fact, they are more likely to be victims of violence than perpetrators. Whiilst there is an association between uncontrolled symptoms of schizophrenia, that does not mean that every person who suffers with schizophrenia is dangerous.
Lack of intelligence or inability to function: Schizophrenia does not affect intelligence. Many individuals with schizophrenia are highly intelligent and capable. While the illness can present challenges to daily functioning, with appropriate treatment and support, many people with schizophrenia can lead fulfilling lives.
Caused by bad parenting or childhood trauma: Schizophrenia is a complex neurodevelopmental disorder with a strong genetic component. While environmental factors may play a role, it is not caused by poor parenting or childhood experiences.
Incurability: While there is currently no cure for schizophrenia, it is a treatable condition. With appropriate medication, therapy, and support, many individuals with schizophrenia can manage their symptoms and live fulfilling lives.
These misconceptions contribute to the stigma surrounding schizophrenia, which can hinder individuals from seeking help and achieving their full potential. It’s crucial to promote accurate information and understanding about this complex mental health condition.
Demographics
Prevalence and incidence of any medical condition can create accumulation. What do the terms mean? Click here to learn more.
The figures on their own mean little in relation to health and economic burdens nationally. In our ‘bucket’ model, it is important to know how many cases are ‘leaving’ the health and social care system.
| Statistic | United Kingdom (UK) | United States (USA) |
|---|---|---|
| Prevalence | 0.3-0.7% (3-7 per 1,000 people) | 0.25-0.64% (2.5-6.4 per 1,000 people) |
| Incidence | 15 per 100,000 people per year | 7.2-21.7 per 100,000 people per year |
Typically occurs in late adolescence or early adulthood.
In the USA, peak age of onset for the first psychotic episode is 18-25 years for men and 18-35 years for women.
Kirkbride et al found median age of onset for all clinically relevant psychoses was 27.5 years in men and 29.0 years in women in their UK study.]
Men tend to develop schizophrenia slightly earlier than women.
Women are more likely to have a second peak of onset after age 45.
Kirkbride et al reported 62% of individuals with psychoses were men, compared to 49% of the general population. They also found evidence that the incidence of schizophrenia in BME groups differed by gender (p=0.02).
Higher rates of schizophrenia in Black Caribbean and Black African populations compared to the White British population in the UK.
Similar trends observed in the USA, with higher rates among African American and Hispanic populations.
Kirkbride et al found all BME groups had elevated rates of psychotic disorders compared to the White British group, even after adjustment for age, gender and socioeconomic status. For schizophrenia, Black Caribbean (IRR=3.1, 95% CI 2.1-4.5) and Black African (IRR=2.6, 95% CI 1.8-3.8) groups had significantly elevated risk. They also noted elevated risk in Pakistani (IRR=3.1, 95% CI 1.2-8.1) and Bangladeshi (IRR=2.3, 95% CI 1.1-4.7) women, and particularly high risk of affective psychoses in Mixed White and Black Caribbean groups (IRR=7.7, 95% CI 3.2-18.8).
Higher rates of schizophrenia in urban areas compared to rural areas in both UK and USA studies.
In the UK, incidence of schizophrenia in the most urban areas is about twice that in the most rural areas.
Kirkbride et al conducted their study in an exclusively inner-city urban area with high levels of immigration and socioeconomic deprivation.
First and second-generation immigrants show higher rates of schizophrenia in both the UK and USA.
In the UK, the relative risk for first-generation immigrants is about 2.7, and for second-generation immigrants, it’s about 4.5.
Kirkbride et al found elevated rates across BME groups, including second and third generation immigrants (e.g. Mixed White and Black Caribbean). They noted that 80% of their Black Caribbean sample were second-generation immigrants or later, while for Black African, White Other, and Bangladeshi groups, the majority were first-generation immigrants.
First and second-generation immigrants show higher rates of schizophrenia in both the UK and USA.
In the UK, the relative risk for first-generation immigrants is about 2.7, and for second-generation immigrants, it’s about 4.5.
Kirkbride et al found elevated rates across BME groups, including second and third generation immigrants (e.g. Mixed White and Black Caribbean). They noted that 80% of their Black Caribbean sample were second-generation immigrants or later, while for Black African, White Other, and Bangladeshi groups, the majority were first-generation immigrants.
Definition of schizophrenia
ICD-11 states, “Schizophrenia and other primary psychotic disorders is a grouping of disorders characterised by significant impairments in reality testing, and alterations in behaviour as manifested in symptoms such as delusions, hallucinations, formal thought disorder (typically manifested as disorganised speech) and disorganised behaviour. They may be accompanied by psychomotor disturbances and negative symptoms such as blunted or flat affect. These symptoms do not occur primarily as a result of substance use (e.g. hallucinogen intoxication) or another medical condition not classified under mental, behavioural and neurodevelopmental disorders (e.g. Huntington disease). The disorders in this grouping are referred to as “primary psychotic disorders” because psychotic symptoms are their defining feature. Psychotic symptoms may also occur in the context of other mental disorders (e.g. in mood disorders or dementia), but in these cases the symptoms occur alongside other characteristic features of those disorders. Whereas experiences of reality loss/distortion occur on a continuum and can be found throughout the population, disorders in this group represent patterns of symptoms and behaviours that occur with sufficient frequency and intensity to deviate from expected cultural or subcultural expectations.”
In essence schizophrenia is often a chronic mental illness that affects a person’s ability to think, feel, and behave clearly. It is characterised by a range of symptoms, including:
- Positive symptoms: Hallucinations (false perceptions), delusions (false beliefs), and disorganised thinking and speech.
- Negative symptoms: Reduced emotional expression, social withdrawal, and lack of motivation.
- Cognitive symptoms: Impairments in attention, memory, executive function, and social cognition.
Schizophrenia is considered to be a neurocognitive disorder, with genetic and environmental factors contributing to its development. While there is no cure, treatment with medication, therapy, and support can help manage symptoms and improve quality of life.
How serious is schizophrenia
The onset of a first episode of schizophrenia marks a significant turning point in a person’s life, often accompanied by profound health and functional challenges. The initial period is typically characterised by a combination of distressing symptoms, including hallucinations, delusions, disorganised thinking, and emotional disturbances. These symptoms can severely disrupt a person’s perception of reality, their ability to think clearly, and their capacity to manage emotions and behaviour. This disruption often leads to difficulties in maintaining relationships, pursuing education or employment, and engaging in daily activities.
Beyond the immediate impact of symptoms, a first episode of schizophrenia carries the potential for long-term disability. Cognitive deficits, such as impaired attention, memory, and executive function, often emerge during this period and can persist even with treatment. These cognitive challenges can significantly hinder a person’s ability to learn, work, and live independently. Approximately 30% of all new cases of schizophrenia will become treatment-resistant schizophrenia.
Furthermore, the social stigma associated with mental illness can lead to discrimination and social isolation, further compounding the challenges faced by individuals experiencing their first episode. The combination of these factors underscores the critical importance of early intervention and comprehensive support to mitigate the long-term health and disability impact of schizophrenia.
For the estimated 30% of individuals with schizophrenia who develop treatment-resistant schizophrenia (TRS), the journey becomes significantly more challenging. TRS, characterised by a lack of adequate response to at least two different antipsychotic medications, often leads to a more severe and persistent illness course. Individuals with TRS may experience more frequent and prolonged periods of psychosis, with heightened symptoms like hallucinations, delusions, and disorganised thinking. This can result in greater difficulties in managing daily life, maintaining relationships, and engaging in work or education.
Furthermore, TRS often necessitates more intensive treatment approaches, including higher doses of medication, combinations of antipsychotics, or clozapine therapy, which can carry an increased risk of side effects. The cumulative impact of persistent symptoms, complex treatment regimens, and potential side effects can significantly impair an individual’s quality of life and increase their reliance on healthcare and social support systems. Individuals with TRS may face greater challenges in achieving their full potential and living independently, underscoring the urgent need for ongoing research and the development of more effective treatments for this complex condition.
Treatment
Before launching into treatment of any type two main considerations must happen:
- Diagnosis: properly diagnosing schizophrenia is not an easy matter. The ICD-11 criteria are clear; clinical practice is never that clear. Diagnosis is not a tickbox exercise.
- Assessment of capacity: save for provisions of the MHA 1983 and emergency situations, every patient should have their capacity assessed and free-willing agreement sought.
Diagnosis is not a ‘art’ in psychiatry as is commonly thrown around. It is a science and must remain a science: finding reliably evidence and understanding symptoms/signs to see if they would meet diagnostic critera. Not every person who hears voices is hallucinating. That may sound like a strange thing to say but it is true. No every person who has weird and very strange beliefs is deluded and therefore suffering with schizophrenia. See: Fundamentals of psychiatric diagnosis.
See our Schizophrenia Checker.
Treatment is not a simple issue of ‘writing up some meds’ and waiting for symptoms to go away. To learn more, see: Treatment – What it means. The Maudlsey Guidelines 2021 are the must have resource for considering treatment with medications.
Treatment-resistant schizophrenia
Treatment-resistant schizophrenia (TRS) is a severe form of schizophrenia. It is characterised by a lack of significant improvement in symptoms, even after treatment with at least two different antipsychotic medications. These medications must have been taken at an adequate dose, for a sufficient duration, and with confirmed adherence to the treatment plan.
The most common definition of treatment-resistant schizophrenia denotes patients with schizophrenia who, despite at least two adequate trials of classical neuroleptic drugs, have persistent moderate to severe positive, or disorganisation, or negative symptoms together with poor social and work function over a prolonged period of time (Meltzer, H. Y. (1997). Treatment-Resistant Schizophrenia – The Role of Clozapine. Current Medical Research and Opinion, 14(1), 1–20. https://doi.org/10.1185/03007999709113338) According to Meltzer, 70% of patients treated for schizophrenia respond to medication and to psychosocial treatments, with remission of positive symptoms of schizophrenia. However, the remaining 30% are considered treatment-refractory or resistant. However, it is not all good news. Of the 70% Meltzer further emphasises that they “may also have clinically significant negative symptoms, poor social and work function, clinically significant cognitive dysfunction, poor quality of life relative to the normal population, and constitute a significant burden to family and society. The lifetime suicide rate in both treatment-resistant and responsive schizophrenic patients is 9–13%, indicating that conventional definitions of neuroleptic response do not convey lower risk of suicide.“
For the estimated 30% of individuals with schizophrenia who develop treatment-resistant schizophrenia (TRS), the journey becomes significantly more challenging. TRS, characterised by a lack of adequate response to at least two different antipsychotic medications, often leads to a more severe and persistent illness course. Individuals with TRS may experience more frequent and prolonged periods of psychosis, with heightened symptoms like hallucinations, delusions, and disorganised thinking. This can result in greater difficulties in managing daily life, maintaining relationships, and engaging in work or education.
Meta-analyses find a response rate of 40%-60% (Chakos et al., 2001, Siskind et al., 2017) for people treated with clozapine. That does not mean that up to 60% of TRS cases will be signficantly ‘better’. Why? The degree of improvement varies a lot from patient to patient and are affected by a range of demographic factors, social factors, indivual and lifestyle factors. In other words a figure like 60% is not entirely great news due to noise in the statistics.
TRS often necessitates more intensive treatment approaches, including higher doses of medication, combinations of antipsychotics, or clozapine therapy, which can carry an increased risk of side effects. The cumulative impact of persistent symptoms, complex treatment regimens, and potential side effects can significantly impair an individual’s quality of life and increase their reliance on healthcare and social support systems. Individuals with TRS may face greater challenges in achieving their full potential and living independently.
Disability in TRS
The bottom line is that having an episode of schizophrenia invites approximately a 1 in 3 chance of being disabled for life. What does that mean? It means serious lingering cognitive impairments even after treatment with medications such as clozapine. Whilst clozapine has about a 40% chance – much better than conventional treatments – for clearing up postiive symptoms, it comes with other problems: cognitive impairments due to side-effects (though overall cognitiion improves), not all negative symptoms simply evaporate.
Despite the best efforts of healthcare professionals, families, and individuals themselves, a significant portion of those with TRS face an uphill battle in reclaiming their pre-illness trajectories in work and social life.
The reality is that TRS often results in persistent functional impairments that make it difficult to meet the demands of competitive employment and navigate complex social situations. Even with optimal treatment and support, many individuals with TRS experience ongoing challenges with resideual symptoms of schizophrenia as mentioned above:
- Cognitive deficits: Difficulties with attention, memory, and executive function can hinder the ability to learn new skills, follow instructions, and maintain focus in a work environment.
- Negative symptoms: Apathy, social withdrawal, and reduced emotional expression can make it challenging to interact with colleagues, build relationships, and engage in social activities.
- Residual psychotic symptoms: Lingering hallucinations or delusions can interfere with concentration, decision-making, and social interactions.
These challenges, combined with the stigma surrounding mental illness, can create significant barriers to employment and social integration. While there have been advancements in treatment and support services, the reality is that TRS often leads to a significant alteration in life course, requiring individuals to adjust their expectations and goals.
Problems in TRS
People who suffer with TRS are often expected to:
- Work closely with their healthcare providers: This includes regular monitoring of physical health, addressing medication side effects, and making informed decisions about treatment options.
- Prioritise healthy lifestyle choices: Engaging in regular exercise, maintaining a balanced diet, and avoiding smoking and excessive alcohol consumption can significantly improve physical health outcomes.
- Access support services: Connecting with mental health professionals, peer support groups, and community resources can provide emotional support, coping strategies, and assistance in navigating the challenges of living with TRS.
However the reality is that they often do not work closely with health professionals, do no make healthy lifestyle choices, and to no partcipate well with community based resources.
- Individuals with more severe negative symptoms at baseline may be less likely to experience significant improvement with clozapine.
- A deficit syndrome, characterised by primary and enduring negative symptoms, is often less responsive to clozapine.
- Co-morbid depression or anxiety can contribute to negative symptoms and may require additional treatment alongside clozapine.
- Treatment response to clozapine can vary significantly between individuals, and some may not experience the desired improvement in negative symptoms.
- Some patients are put on medications such as hyoscine hydrobromide to manage excessive salivation. Hysoscine is well known to affect cognitive performance.
- Patients often suffer obesity (leading to loss of self-esteem).
- Stockings et al (2021) found that between 60 to 80% of people suffering with schizophrenia smoke tobacco, whilst Dalack et al 1998 found between 80 to 90%. No doubt that carries serious risk of fatal illnesses, and loss of life expectancy. The TRS population may be expected to have a particular concentration of smokers. Smoking induces certain liver enzymes that metabolises medications faster. That means that patients who smoke often need to be given higher doses of medication, which then leads to more side-effects.
The future of treatment
The economic burdens of TRS for a nation such as the UK are likely to be substantial per 100,000 of population.
Direct Healthcare Costs:
- Medications: This includes the cost of antipsychotic medications, including clozapine, which can be expensive, and any other medications needed to manage side effects or co-occurring conditions.
- Hospitalisation: TRS often involves multiple hospitalisations, which can be costly due to the length of stay, intensity of care, and potential for readmission.
- Community care: This encompasses a wide range of services, including case management, assertive community treatment (ACT), home visits, and day programs.
- Staffing costs: This includes the salaries, training, and ongoing professional development of psychiatrists, nurses, social workers, therapists, and other mental health professionals involved in the care of individuals with TRS.
Indirect Costs:
- Loss of productivity: TRS often leads to unemployment or disability, resulting in lost income and reduced economic output. This can have a significant impact on the individual, their family, and the broader economy.
- Benefits system costs: Individuals with TRS may require long-term support from the benefits system, including disability benefits, housing benefits, and other social welfare programs.
- Informal care: Family members and caregivers often provide significant unpaid care and support to individuals with TRS, which can have economic implications in terms of lost work time and reduced productivity.
- Premature mortality: The reduced life expectancy associated with TRS translates to a loss of potential economic contributions and increased costs associated with end-of-life care.
Other Costs:
- Travel costs: This includes the cost of transportation for community mental health teams to visit clients in their homes or other community settings.
- Administrative costs: This includes the costs associated with managing and coordinating care, such as record keeping, communication, and data collection.
- Research and development: Investment in research to develop more effective treatments and interventions for TRS is essential for reducing the long-term costs associated with the illness.
Understanding the full spectrum of costs associated with TRS is crucial for advocating for increased investment in mental health services, prevention programs, and research efforts aimed at improving the lives of individuals with this challenging condition. The main efforts need to be concentrated on preventing patients from entering that TRS group. That’s where there will be maximum bang for buck. Early intervention programmes need to be very joined up to all aspects of care. If the UK spends less on those preventative measures it’s like the economy shooting itself in the foot.
Conclusion
As substantial part of this article focused on TRS. TRS arises from schizophrenia – no doubt.That was quite reasonable because the TRS group of patients are the most disabled and carry huge economic burdens to the benefits systems, social care, and health systems.
It was identified that TRS is analogous to a terminal physical illness and associated with a significant shortening of life expectancy due to a number of health and social factors. There is no spreadsheet of facts and figures that can inform on what level fo spending on health services for schizophrenia will bring maximised benefit to individuals and the national economy.
Increased spending should be seen as an investment for which there can be returns in terms of savings on current levels of expenditure.
Recommended further reading:
Kirkbride JB, Barker D, Cowden F, et al. Psychoses, ethnicity and socio-economic status. British Journal of Psychiatry. 2008;193(1):18-24. doi:10.1192/bjp.bp.107.041566
Meltzer, H. Y. (1997). Treatment-Resistant Schizophrenia – The Role of Clozapine. Current Medical Research and Opinion, 14(1), 1–2 https://doi.org/10.1185/03007999709113338
Harvey et al 2012 Published online 2012 Apr 13 – Functional Impairment In People with Schizophrenia: Focus on Employability and Eligibility for Disability Compensation – doi: 10.1016/j.schres.2012.03.025
Schizophrenia and Related Psychoses – The Maudsley Prescribing Guidelines 2021 – Taylor et al, FREE ACCESS https://onlinelibrary.wiley.com/doi/full/10.1002/9781119870203.mpg001
John M. Kane, Stephen R. Marder, Psychopharmacologic Treatment of Schizophrenia, Schizophrenia Bulletin, Volume 19, Issue 2, 1993, Pages 287–302, https://doi.org/10.1093/schbul/19.2.287
Treatment resistant schizophrenia is associated with the worst community functioning among severely-ill highly disabling psychiatric conditions and is the most relevant predictor of poorer achievements in functional milestones – Felice Iasevoli et al 2016 https://doi.org/10.1016/j.pnpbp.2015.08.010
Management of treatment resistance in schizophrenia – Robert R. Conley Biological Psychiatry Volume 50, Issue 11, 1 December 2001, Pages 898-911
Clinical Guidance on the Identification and Management of Treatment-Resistant Schizophrenia – Kane et al 2019 – https://www.psychiatrist.com/jcp/clinical-guidance-on-treatment-resistant-schizophrenia/
Evolution of the Concept of Treatment-resistant Schizophrenia: Toward a Reformulation for Lack of an Adequate Response – Juan D. Molina – Journal of Experimental & Clinical Medicine Volume 4, Issue 2, April 2012, Pages 98-102
Stockings, E.; Metse, A.; Taylor, G. “It’s the one thing they have left”: Smoking, smoking cessation and mental health. Supporting Tob. Cessat. 2021, 248–272.
Dalack GW, Healy DJ, Meador-Woodruff JH . (1998): Nicotine dependence in schizophrenia: clinical phenomena and laboratory findings. Am J Psychiatry 155: 1490–1501
