2.1.1. Symptoms, presentation and patterns

Schizophrenia is one of the terms used to describe a major psychiatric disorder (or cluster of disorders) that alters an individual’s perception, thoughts, affect and behaviour. Individuals who develop schizophrenia will each have their own unique combination of symptoms and experiences, the precise pattern of which will be influenced by their particular circumstances.

Typically, the problems of schizophrenia are preceded by a ‘prodromal’ period. This is often characterised by some deterioration in personal functioning. Difficulties may include memory and concentration problems, social withdrawal, unusual and uncharacteristic behaviour, disturbed communication and affect, bizarre ideas and perceptual experiences, poor personal hygiene, and reduced interest in and motivation for day-to -day activities. During this prodromal period, people with schizophrenia often feel that their world has changed, but their interpretation of this change may not be shared by others. Relatives and friends frequently report that the person with schizophrenia has changed ‘in themself’. These changes may well affect the person’s ability to hold down a job, study, or relate to family and friends.

The prodromal period is typically followed by an acute phase marked by characteristic positive symptoms of hallucinations, delusions and behavioural disturbances such as agitation and distress. Following resolution of the acute phase, usually due to some treatment, positive symptoms diminish or disappear for many people, sometimes leaving a number of negative symptoms not unlike the early prodromal period. This third phase, which may last many years, is often interrupted by acute exacerbations or ‘relapses’, which may need additional interventions.

Although this is a common pattern, the course of schizophrenia varies considerably. For example, although some people may experience disturbing symptoms only briefly, others may live with them for months or years. A number of individuals experience no prodromal period, the disorder beginning with a sudden and often frightening acute episode. After an initial episode, between 14 to 20% of individuals will recover fully. Others will improve but have recurrences (see section 2.1.3). Recurrence can be affected by stress, social adversity, and isolation. In the longer term (up to 15 years), over half of those with these diagnoses will have episodic rather than continuous difficulties. As Harrow and colleagues (2005) have observed, ‘some of these intervals of recovery will appear spontaneously and may be tied to individual patient factors such as resilience’.

There is debate about different symptom presentation and the prominence of affective symptoms among those diagnosed with schizophrenia from diverse cultural or ethnic backgrounds, and around comorbidities and their prevalence across cultural and ethnic groups. There are few recent studies of the issues amongst populations in the UK, reflecting a serious omission in research in the UK, but also that there may be reasons why specific people from ethnic backgrounds or socially excluded groups do not engage or benefit as much from services and treatments.

2.1.2. Impairment and disability

Although the problems and experiences associated with schizophrenia are often distressing, the effects of the disorder can be pervasive. A significant number of people continue to experience long-term impairments, and as a result schizophrenia can have a considerable effect on people’s personal, social and occupational lives. A European study of six countries, found that over 80% of adults with this diagnosis had some persistent problems with social functioning, though not all of them were severe. The best predictor of poorer functioning in the long term was poor functioning in the first 3 years post-diagnosis (Wiersma et al., 2000). Thornicroft and colleagues (2004) found that 80% remained unemployed.

The disabilities experienced by people with schizophrenia are not solely the result of recurrent episodes or continuing symptoms. Unpleasant side effects of treatment, social adversity and isolation, poverty and homelessness also play a part. These difficulties are not made any easier by the continuing prejudice, stigma and social exclusion associated with the diagnosis (Sartorius, 2002; Thornicroft, 2006).

Worldwide, it has been estimated that schizophrenia falls into the top ten medical disorders causing disability (WHO, 1990). Mortality among people with schizophrenia is approximately 50% above that of the general population, partly as a result of an increased incidence of suicide (about 10% die by suicide) and violent death, and partly as a result of an increased risk of a range of a wide range of physical health problems, These include those induced by cigarette smoking, obesity and diabetes, as research has shown more recently. The precise extent to which this excess mortality and high rates of disability are, at least in part, a result of some of the medications given for schizophrenia is still not clear. Difficulties experienced by mental health service users in accessing general medical services, in both primary and secondary care, continue to contribute to reduced life expectancy. Recent work indicates that young Caribbean men and African men, and middle-aged women from diverse ethnic or cultural backgrounds are at higher risk of suicide, and that this may be due to differences in symptom presentation and conventional risk factor profiles across ethnic groups (Bhui & McKenzie, 2008).

2.1.3. Prognosis, course and recovery

Historically, many psychiatrists and other healthcare professionals have taken a pessimistic view of the prognosis for schizophrenia, regarding it as a severe, intractable and often deteriorating lifelong illness. This negative view has failed to find confirmation from long-term follow-up studies, which have demonstrated considerable variations in long-term outcome. While it is estimated that around three quarters of people with the schizophrenia will suffer recurrent relapse and some continued disability (Nadeem et al., 2004), the findings of follow-up studies over periods of 20 to 40 years suggest that there is a moderately good long-term global outcome in over half of people with schizophrenia, with a smaller proportion having extended periods of remission of symptoms without further relapses (Gaebel & Fromman 2000; Harrison et al., 2001; Jobe & Harrow, 2005). It should also be noted that some people who never experience complete recovery from their experiences nonetheless manage to sustain an acceptable quality of life if given adequate support and help.

The early stages of schizophrenia are often characterised by repeated exacerbation of symptoms such as hallucinations and delusions and disturbed behaviour. While a high proportion respond to initial treatment with antipsychotic medication, around 80% will relapse within 5 years of a treated first episode, which is partly explained by discontinuation of medication (Robinson et al., 1999, 2002; Nadeem et al., 2004). There is some evidence that early involvement in a progressive therapeutic programme incorporating social and psychological interventions as well as medication might be an important factor in realising long-term gains (Harrison et al., 2001; Linszen et al., 2001; de Haan et al., 2003). Research has also suggested that delayed access to mental health services in early schizophrenia – often referred to as the duration of untreated psychosis – is associated with slower or less complete recovery, and increased risk of relapse and poorer outcome in subsequent years (Harrigan et al., 2003; Bottlender et al., 2003). In the longer term, the factors that influence the differential recovery from schizophrenia are not well known. But recovery may happen at any time, even after many years (Harrison et al., 2001).

A number of social and economic factors also appear to affect the course of schizophrenia. For example, in developed countries it is well established that schizophrenia is more common in lower socio-economic groups. However, this appears to be partly reversed in some developing countries (Jablensky et al., 1992), suggesting that the relationship between incidence, recovery rates and cultural and economic factors is more complex than a simple correspondence with socio-economic deprivation (Warner, 1994).

The risk factors for developing schizophrenia and the acceptability of interventions and the uptake of treatments have been shown to vary across ethnic groups. Although the focus in the UK has been the African Caribbean population, early evidence suggests other ethnic groups and migrants in general may be at risk; social factors may be expressed through ethnic group rather than ethnic groups per se having a higher risk or that they require different treatments. However, the different pattern of service use, access to services and perceived benefits across ethnic groups is a cause of concern among service users.

The effects of schizophrenia on a person’s life experience and opportunities are considerable; service users and carers need help and support to deal with their future and to cope with any changes that may happen.

2.1.4. Diagnosis

A full and proper discussion of the diagnosis and classification of schizophrenia is outside the scope of this updated guideline, although they are important issues in research and in clinical practice, and the impact of receiving a diagnosis of schizophrenia can have considerable social and personal consequences for the individual.

The wide variation in presentation, course and outcome in schizophrenia may reflect an underlying variation in the nature of the disorder, or even that schizophrenia is a cluster of different disorders with variable courses and outcomes (Gelder et al., 1997). Equally, this variation may result from a complex interaction between biological, social, psychological, cultural and economic factors. Several models to explain this heterogeneity have been proposed, although none has been widely accepted. Moreover, prior to the establishment of diagnostic systems such as the Diagnostic and Statistical Manual of Mental Disorders (DSM; American Psychiatric Association, 1994) and the International Statistical Classification of Diseases and Related Health Problems (ICD; World Health Organization, 1992), large variations in the incidence and prevalence of the disorder were reported. While DSM, ICD and similar systems have improved the reliability and consistency of diagnosis, considerable controversy exists as to whether a diagnosis of schizophrenia really represents a single underlying disorder.

Both ICD-10 and DSM-IV agree on the symptom clusters that confirm a diagnosis of schizophrenia. There are three main domains, including: psychotic symptoms such as certain types of auditory hallucinations (hearing voices), delusions (‘paranoia’, ‘telepathy’) and thought disorder (incomprehensible speech); negative symptoms such as poor self care, reduced motivation, reduced ability to experience pleasure, alogia (reduced production of thought) and affective blunting (lack of emotional expression); reduced social functioning and the rarer symptom of catatonia. ICD-10 requires that at least one such diagnostic symptom from one of the 3 domains should be clearly present for 1 month. ICD-10 also confirms the diagnosis if two of these symptoms have been present in a less clear manner over the same time frame. The diagnosis is not made in the presence of prominent mood symptoms such as depression or mania. In DSM-IV there is agreement with ICD-10 that diagnostic symptoms need to be present for at least 1 month. It also stipulates that there should be evidence of ongoing symptoms persisting for at least 6 months.

The uncertainty about diagnosis, and consequently its limited predictive validity, raises a number of important issues for service users. First, many clinicians in both primary and secondary care are reluctant to give this diagnosis, sometimes making it more difficult for people and their families to receive help early on. Second, some service users are reluctant to accept the diagnosis, and may reject suggestions that schizophrenia is an illness in need of treatment. Third, to receive a diagnosis of schizophrenia, with the stigma that this entails, seems to some a heavy price to pay given the diagnostic uncertainties that exist. Finally, some people diagnosed with schizophrenia object to receiving compulsory treatment for what they regard as no more than a putative illness.

That there are genuine problems with the diagnosis and classification of schizophrenia is not at question. However, for many people so diagnosed, the frequently painful and frightening experiences of schizophrenia and the disability often associated with it, with or without the diagnosis. Moreover, to improve treatments and services for this group of people would be difficult without an operational diagnostic category with which to undertake research, and to allocate resources on the basis of proven need. Despite this practical requirement for diagnostic categories, caution is necessary, to avoid making overly simplistic prognostications for individual service users. Professionals also have a duty to provide good, clear and honest information regarding schizophrenia, and about the treatments and services available.

2.1.5. Physical health care

The association between schizophrenia and poor physical health is well established (Marder et al., 2003). Poor health results in higher standardised mortality rates and increased morbidity for individuals with schizophrenia (Saha et al., 2008). It is apparent from epidemiological work that this excess morbidity and mortality is the result of a range of physical disorders, and not simply due to the effects of long-term antipsychotic medication or other factors, such as substance misuse, which are also associated with schizophrenia.

Reports on the mortality of people with schizophrenia indicate that there is an increased risk of death from circulatory conditions, infections and endocrine disorders. Despite high reported rates of smoking in people with schizophrenia, rates of lung cancer do not appear to be raised (Gulbinat et al, 1992; Jeste et al, 1996; Harris & Barraclough, 1998; Osborn et al., 2007b). People with schizophrenia have higher rates of cardiovascular disease, including myocardial infarction, than the general population (Lawrence et al., 2003; Hennekens et al, 2005; Osborn et al., 2007b).

Patients with schizophrenia are more likely than the general population to have lifestyle risk factors for cardiovascular disease and mortality (McCreadie, 2003; Osborn et al., 2006; de Leon & Diaz, 2005). They were found to be more likely to smoke even when the study population was controlled for socio-economic status (Brown et al, 1999; Osborn et al., 2006). It has been suggested that high smoking rates in people with schizophrenia can be explained by the therapeutic effect of nicotine on psychotic symptoms and the reduction in side effects of antipsychotic medication due to the enhanced metabolism of antipsychotic drugs in smokers (Jeste et al., 1996). People with schizophrenia are also less likely to exercise and are more likely to have diets higher in fat and lower in fibre than the general population (Brown et al., 1999; Osborn et al., 2007a). People with schizophrenia are at increased risk of weight gain and this can be partly attributed to some of the newer antipsychotic drugs known to have a greater propensity to cause weight gain (American Diabetes Association, 2004; Nasrallah, 2003, 2008). Recent evidence from a systematic review of trials on non-pharmacological treatments including individual or group interventions, cognitive–behavioural therapy and nutritional counselling indicated that these treatments were effective in reducing or attenuating antipsychotic-induced weight gain compared with treatment as usual (Álvarez-Jiménez et al, 2008).

Antipsychotic medication may induce endocrine abnormalities (for example, diabetes and galactorrhoea), neurological disorders (for example, tardive dyskinesia), metabolic abnormalities (for example, lipid abnormalities, weight gain) and cardiovascular side effects (for example, lengthening of the QT interval on electrocardiography) (American Diabetes Association, 2004; Koro et al., 2002; Saari et al., 2004; Lieberman et al., 2005; Thakore, 2005; Dinan, 2004; Holt et al., 2005; Nasrallah, 2003, 2008; Lindenmayer et al., 2003).

The fact that this excess mortality and morbidity has a range of causes – including dietary and behavioural ones – suggests that lifestyle factors have a significant part to play. It could be that some of the problems associated with the development of schizophrenia impair or otherwise affect people’s ability to manage their own physical health effectively. It is also likely that socio-economic factors, including social exclusion, have a significant role. Nevertheless, there is also convincing evidence that psychiatrists and GPs are poor at recognising and treating physical conditions such as cardiovascular disorders in psychiatric patients (for a review see Osborn, 2001). A direct comparison of cardiovascular screening (that is, blood pressure, lipid levels and smoking status) of people with asthma, schizophrenia and with other attendees indicated that general practitioners were less like to screen people with schizophrenia when for cardiovascular risk when compared with the other two groups (Roberts et al, 2007).

The development of case registers and specific remuneration for GPs for the monitoring of physical health problems for those with mental health problems, are contained within the new General Medical Services contract (Department of Health, 2003), and has encouraged focus on these issues. The contract certainly provides opportunity for increased cooperation across the primary/secondary care interface, but as yet, the evidence for such interventions remains uncertain. Some early findings suggest that quite simple interventions might have some impact on the lifestyle factors associated with increased morbidity, for example group interventions for smoking cessation (Addington et al, 1998). There is also evidence to suggest that people with schizophrenia are just as likely as others to attend their GP for cardiovascular screening as others without this diagnosis (Osborn et al., 2003). Given this, careful consideration should be given to the role of GPs in the management of physical health problems. This is discussed further in section 9.2.

2.8.1. Pharmacological treatment

Today, within both hospital and community settings, antipsychotic medicines remain the primary treatment for schizophrenia. There is well-established evidence for their efficacy in both the treatment of acute psychotic episodes and relapse prevention over time (Janicak et al., 1993). However, despite this, considerable problems remain. A significant proportion of service users, up to 40% (Klein & Davis, 1969; Kane et al., 1996), have a poor response to conventional antipsychotic drugs, and continue to show moderate to severe psychotic symptoms, both positive and negative.

In addition, conventional or typical antipsychotic agents (more recently called first-generation antipsychotics or FGAs) are associated with a high incidence and broad range of side effects, including lethargy, sedation, weight gain and sexual dysfunction. Movement disorders, such as parkinsonism, akathisia, dystonia, often referred to as acute extrapyramidal side effects (EPS), are common and can be disabling and distressing. A serious long-term side effect is tardive dyskinesia, which develops in around 20% of people receiving first-generation antipsychotic drugs (Kane et al, 1985). This is a late-onset EPS, characterised by abnormal involuntary movements of the lips, jaw, tongue and facial muscles, and sometimes the limbs and trunk. Although a person who develops tardive dyskinesia is usually unaware of the movements, they are clearly noticed by others, and the condition has long been recognised as a severe social handicap (Barnes & Kidger, 1978).

In response to the limited effectiveness and extensive side effects of FGAs, considerable effort has gone into developing pharmacological treatments for schizophrenia that are more effective and produce fewer or less disabling side effects. The main advantage of these second-generation (‘atypical’) antipsychotics (SGAs) appears to be that they have a lower liability for acute EPS and tardive dyskinesia. However, in practice this must be balanced against other side effects, such as weight gain and other metabolic problems that may increase the risk of type-2 diabetes and cardiovascular disease (American Diabetes Association, 2004; Lindenmayer et al., 2003; Mackin et al., 2007; Nasrallah, 2003, 2008; Suvisaari, 2007).

Raised serum prolactin is also an important adverse effect of antipsychotic medication, which can lead to problems such as menstrual abnormalities, galactorrhea and sexual dysfunction, and in the longer term to reduced bone mineral density (Haddad & Wieck, 2004, Meaney et al., 2004).

In people with schizophrenia who have not responded well to other antipsychotics, only one antipsychotic drug, clozapine, has a specific license for the treatment of this group of people.

Further information about the antipsychotic medication reviewed for this update can be found in Chapter 6 and 7.

2.8.2. Psychological and psychosocial interventions

The use of specific psychological and psychosocial methods to helping people with schizophrenia is relatively recent. Some of the earliest attempts included psychoanalysis (Fromm-Reichman, 1950), and a modification of psychoanalysis designed to enhance better integration into a hospital environment (Stack-Sullivan, 1947). These pioneering efforts increased awareness of the psychological processes and personal impact of schizophrenia.

Since then a number of other psychological approaches have been introduced. Social skills training, developed in the 1970s, was derived from the recognition of the social difficulties that many people with schizophrenia face, especially those in institutions, and used methods popular at the time, based on learning theory and behaviourism (Shepherd, 1978). As deinstitutionalisation gained ground in the 1970s, psychological and social research into factors that might contribute to relapse in people living in community settings, such as stressful life events and communication difficulties in families (high expressed emotion), stimulated the development of family interventions to prevent relapse (Leff et al., 1982). Family interventions often included education for family members about schizophrenia (sometimes called ‘psychoeducation’), and in time, research was conducted on the benefits of ‘psychoeducation’ alone.

By the late 1980s, cognitive behavioural therapy (CBT) approaches, originally developed in the 1970s for depression, were first applied to helping to reduce distressing psychotic symptoms and then broadened to work with emotional problems and functioning (Garety et al., 2000). Another approach, cognitive remediation therapy, was also developed in the 1980s and 1990s, and differs from CBT in that it is not directed at distressing symptoms but is instead focused on training in cognitive functions such as learning, planning, attention or memory (Green, 1993). A specific cognitive behavioural approach that aims to enhance compliance with medication was also developed towards the mid 1990s, and is now commonly known as ‘adherence therapy’ (Kemp et al., 1996).

Counselling and supportive psychotherapy as well as various forms of group therapy and ‘milieu’ therapy have long been practised with this client group. Finally, the four arts therapies that emerged as organised professions in the middle of last century, have in recent years begun to be evaluated formally in trials (Crawford & Patterson, 2007).

The psychological approaches considered in this updated guideline are reviewed, with further description and definitions, in Chapter 8.

2.8.3. Service-level interventions

Service-level interventions for people with schizophrenia include both ‘inpatient’ services and a variety of community team models. According to recent figures, services for people with schizophrenia account for 24% of the NHS spend on mental health (MIND, 2005). Two-thirds of that spend is on inpatient care where people with schizophrenia use over 60% of the provision (Knapp, 1997). The inpatient services comprise a range of statutory, independent and third sector provision ranging in degree of restriction and cost from high secure hospitals, medium secure and low secure units for mentally disordered offenders, through to intensive care, acute beds and rehabilitation units. The rates of use, care models and outcomes vary widely in these settings and there is no substantial evidence base for the optimal model, although a range of national regulators and peer review networks describe architectural ‘healing’ designs, standards and care pathways, for example, Accreditation for Acute Inpatient Mental Health Services (AIMS) initiated by the Royal College of Psychiatrists (2007) and the King’s Fund’s Enhancing the Healing Environment Programme (Waller & Finn, 2004).

Service-level interventions in the commun ity include, most commonly, psychiatric outpatient clinics, generic locality community mental health teams (CMHTs), case management, acute day hospital care and non-acute day centre care. With the National Service Framework (NSF) policy directives and the various Mental Health Policy Implementation Guides being implemented in the past decade (for example, Department of Health, 1999; 2001), a growing number of crisis resolution and home treatment teams (CRHTs), assertive community treatment or outreach teams (ACTs) and early intervention in psychosis services (EIPS) have been set up across the country. These new configurations in service delivery, though still evolving, have formed an increasingly important element in the management of all forms of severe mental illness, particularly psychoses. They emphasise an alternative to inpatient admission, with treatments and interventions focused on the service user’s usual environment and context.

Social interventions for people with schizophrenia should strive to promote recovery. As NIMHE states: ‘Recovery is what people experience themselves as they become empowered to manage their lives in a manner that allows them to achieve a fulfilling, meaningful life and a contributing positive sense of belonging in their communities’ (NIMHE, 2005). An integrated social programme for supporting access to work, education and recreation, is regarded as essential in addressing the impact on social function and isolation caused by schizophrenia. Social support and services looking at independent accommodation/housing, fighting stigma, improving access to meaningful activities addressing the individual’s aspiration and strengths, and health promotion in the wider communities, are all important considerations in realising the social inclusion principle (Repper & Perkins, 2003). Survey results amongst service users have also promoted the importance of social interventions that would improve/enhance better and more personal relationships, minimise discrimination, promote self-management, and ease social isolation through better availability of befriending and peer support schemes (RETHINK, 2003).

2.8.4. Primary–secondary care interface

Most people with a diagnosis of schizophrenia in the care of the NHS are treated by secondary care mental health services. Surveys suggest that about 10–20% of service users are managed solely in primary care (Jeffreys et al, 1997; Kendrick et al., 2000; Rodgers et al, 2003). This represents a significant shift from previous surveys (Johnstone et al, 1984; Pantelis et al, 1988) and may be an indication of the impact of recent changes in the structure and delivery of mental health services. This updated guideline therefore concentrates on the provision of care by secondary care services. It does not address the issue of the identification and initial diagnosis of schizophrenia, which is beyond its scope, although this is a key issue for primary care services.

Nevertheless, primary care services provide a vital service for people with schizophrenia, who consult primary care practitioners more frequently (Nazareth et al., 1993) and are in contact with primary care services for a longer cumulative time than patients without mental health problems (Lang et al., 1997a, 1997b; Kai et al., 2000). A small percentage of service users have all their mental health care needs provided by primary care; this includes monitoring, treatment and support for their mental health problems in collaboration with secondary care services. Most receive much, if not all, of their physical care from primary care. Moreover, although most GPs regard themselves as involved in the monitoring and treatment of physical illness and prescribing for physical health problems, for people with schizophrenia, only a minority of GP’s regard themselves as involved in the monitoring and treatment of mental health difficulties (Bindman et al., 1997; Burns et al., 2000). Even fewer GP’s are involved in secondary care Care Programme Approach (CPA) review meetings (Bindman et al., 1997). Where possible, the guideline addresses these issues in its evidenced-based recommendations. Where this is not possible, they are addressed through a number of good practice points, particularly in relation to the interface between primary and secondary care. Guidance on this interface has been incorporated into Chapter 9 on service interventions, with the aim of assisting primary care professionals in the management and referral of people with schizophrenia.