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NATIONS

FOR

MENTAL

HEALTH

Division of Mental Health

and Prevention of Substance Abuse

World Health Organization

Geneva

Schizophrenia

and

public health

WHO/MSA/NAM/97.

Nations for Mental Health:

An Action Programme on Mental Health for Underserved Populations

Objectives of Nations for Mental Health

• To enhance the attention of people and governments of the world to the effects of mental health problems and substance abuse on the social well-being and physical health of the world’s underserved populations. A first step is to increase awareness and concern of the importance of mental health through a series of key high profile regional and international events. Secondly, efforts will be devoted to building up the will of the key political authorities to participate. Thirdly, and finally, efforts are to be directed at securing political commitments by decision-makers.
• To establish a number of demonstration projects in each of the six WHO regions of the world. They are meant to illustrate the potential of collaborative efforts at country level, with the view of leading on to projects of a larger scale.
• To encourage technical support between countries for service development, research and training.

The implementation of the programme depends on voluntary contributions from governments, foundations, individuals and others. It receives financial and technical support from the Eli Lilly and Company Foundation, Johnson and Johnson European Philanthropy Committee, the Government of the United Kingdom of Great Britain and Northern Ireland, the Institute of Psychiatry at the Maudsley Hospital of London (United Kingdom), the Free and Hanseatic City of Hamburg (Germany), the Villa Pini Foundation (Chieti, Italy), Columbia University (New York, USA), the Laboratoires Servier (Paris, France) and the International Foundation for Mental Health and Neurosciences (Geneva, Switzerland).

Further information on Nations for Mental Health can be obtained by contacting:

Dr J.A. Costa e Silva, Director Division of Mental Health and Prevention of Substance Abuse or Dr B. Saraceno, Programme Manager Nations for Mental Health Division of Mental Health and Prevention of Substance Abuse World Health Organization CH – 1211 Geneva 27, Switzerland E-mail: saracenob@who.ch Telephone: (41) 22 791.36. Fax: (41) 22 791.41.

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© World Health Organization, 1998 This document is not a formal publication of the World Health Organization (WHO), and all rights are reserved by the Organization. The document may, however, be freely reviewed, abstracted, reproduced and translated, in part or in whole, but not for sale nor for use in conjunction with commercial purposes. The views expressed in documents by named authors are solely the responsibility of those authors. Designed by WHO Graphics

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Contents

 - Chapter Preface v - Introduction - Chapter - Clinical issues - Diagnosis - Clinical picture - Chapter - Epidemiology - Incidence and prevalence - Course and outcome - Risk factors - Comorbidity - Chapter - Consequences of schizophrenia - Mortality - Social disability - Social stigma - Impact on caregivers - Social costs - Chapter 

• Prevention, treatment and care - Preventive interventions - Drugs - Family interventions
• Other psychosocial interventions - Chapter - Service delivery - Chapter - Conclusion - References

v

Preface

The World Health Organization has established a new Action Programme on Mental Health for Underserved Populations. This programme, called ‘Nations for Mental Health’, has been created to deal with the increasing burdens of mental health and substance abuse worldwide. The main goal of the programme is to improve the mental health and psychosocial well being of the world’s underserved populations.

Solutions to mental health and substance abuse problems entail a joint mobiliza- tion of social, economic and political forces as well as substantial changes in governmental policies related to education, health, and economic development in each country. This demands an intense and sustained effort from the nations of the world through joint cooperation between governments, nongovern- mental organizations and the organizations within the United Nations system. The programme is of utmost importance to the work of WHO and WHO is willing to lead and coordinate this ambitious task. Several international meetings and launchings have been organized, in collaboration with other international organizations and academic institutions. A number of demonstration projects related to the programme have already been initiated in several countries. These projects are meant to illustrate and/or demonstrate the potential of collabora- tive efforts at country level, with the view of leading on to projects of a larger scale.

This document addresses important public health issues related to schizophrenia. It was written by Angelo Barbato, Centre ‘Antonini’, Milano, Italy.

I am very pleased to present this document as part of the global process of raising awareness and concern about the effects of mental health problems. It is hoped that this important document will help support health ministers, ministry officials, and regional health planners whose task is to deliver and improve mental health policy and services within a strategic context.

Dr. J. A. Costa e Silva

Director

Division of Mental Health and Prevention of Substance Abuse (MSA)

World Health Organization

Schizophrenia and public health^1

Chapter 1

Introduction

The term schizophrenia was introduced into the medical language at the beginning of this century by the Swiss psychiatrist Bleuler. It refers to a major mental disorder, or group of disorders, whose causes are still largely unknown and which involves a complex set of disturbances of thinking, perception, affect and social behaviour. So far, no society or culture anywhere in the world has been found free from schizophrenia and there is evidence that this puz- zling illness represents a serious public health problem.

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Table 1. Diagnostic criteria for schizophrenia

ICD-10 DSM-IV

A. Characteristic symptoms: Two or more of the following, each present for a significant portion of time during a 1-month period, or less if successfully treated:

1. Delusions, 2) Hallucinations, 3) Disorganized speech, e.g. frequent derailment or incoherence, 4) Grossly disorganized or catatonic behavior, 5) Negative symptoms, i.e. affective flattening, alogia or avolition. Note : Only one criterion A symptom is required if delusions are bizarre or hallucinations consist of a voice keeping up a running commentary on the person’s behaviour or thoughts, or two or more voices conversing with each other. B. Social/Occupational dysfunction. For a significant portion of the time since the onset of the disturbance, one or more major areas of functioning such as work, interpersonal relations, or self-care are markedly below the level achieved prior to the onset (or when the onset is in childhood or adolescence, failure to achieve expected level of interpersonal, academic or occupational achievement). C. Duration. Continuous signs of the disturbance persist for at least 6 months. This 6-month period must include at least 1 month of symptoms (or less if successfully treated) that meet criterion A, i.e. active-phase symptoms, and may include periods of prodromal or residual symptoms. During these prodromal or residual periods, the signs of the disturbance may be manifested by only negative symptoms or two or more symptoms listed in criterion A present in an attenuated form (e.g. odd beliefs, unusual perceptual experiences). D. Schizoaffective and mood disorder exclusion. Schizoaffective and mood disorders have been ruled out because either (1) no major depressive, manic or mixed episodes have occurred concurrently with the active-phase symptoms or (2) if mood episodes have occurred during active-phase symptoms, their total duration has been brief relative to the duration of the active and residual periods. E. Substance/general medical condition exclusion. The disturbance is not related to the direct physiological effect of a substance (e.g. a drug of abuse, a medication) or a general medical condition. F. Relationship to a pervasive developmental disorder. If there is a history of autistic disorder or another pervasive developmental disorder, the additional diagnosis of schizophrenia is made only if prominent delusions or hallucinations are also present for at least a month (or less if successfully treated).

A minimum of one very clear symptom belonging to any one of the groups listed below as (a) to (d) or symptoms from at least two of the groups referred to as (e) to (i) should have been clearly present for most of the time during a period of 1 month or more. a) Thought echo, thought insertion or withdrawal and thought broadcasting b) delusions of control, influence or passivity, clearly referred to body or limb movements or specific thoughts, actions or sensations; delusional perception c) hallucinatory voices giving a running commentary on the patient’s behaviour or discussing the patient among themselves, or other types of hallucinatory voices coming from some part of the body d) persistent delusions of other kinds that are culturally inappropriate and completely impossible, such as religious or political identity, or superhuman powers and abilities (e.g. being able to control the weather or being in communication with aliens from another world) e) persistent hallucinations in any modality, when accompanied either by fleeting or half- formed delusions without clear affective content or by persistent over-valued ideas, or when occurring every day for weeks or months on end f) breaks or interpolations in the train of thought, resulting in incoherence or irrelevant speech, or neologisms g) catatonic behaviour, such as excitement, posturing. or waxy flexibility, negativism, mutism and stupor h) ‘negative’ symptoms such as marked apathy, paucity of speech and blunting or incongru- ity of emotional responses, usually resulting in social withdrawal and lowering of social performance; it must be clear that these are not due to depression or neuroleptic medication i) a significant and consistent change in the overall quality of some aspects of personal behaviour, manifest as loss of interest, aimlessness, idleness, a self-absorbed attitude and social withdrawal.

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Most neurological disorders can usually be ruled out by the presence of typical physical signs or by the findings of laboratory tests. However, the possibility of a neurological or medical disease should be suspected and carefully investi- gated at the first onset of psychosis, especially if this occurs in childhood or old age, in the presence of unusual features or when there is a marked change in quality of symptoms during the course of the disorder.

Differentiation between schizophrenia and other mental disorders requires consideration of the patient’s history and clustering of symptoms, sometimes supplemented by longitudinal observation of the course of the illness.

2.2 Clinical picture

Although the clinical presentation of schizophrenia varies widely among affected individuals and even within the same individual at different phases of the illness, some of the following symptoms can always be observed:

• Thought disorder: usually inferred from abnormalities in spoken or written language, such as loosening of associations, continuing digression in speech, poverty of speech content and use of idiosyncratic expressions.
• Delusions: false beliefs based on incorrect inferences about reality, at odds with the patient’s social and cultural background. Ideas of reference, control or persecution can often be observed.
• Hallucinations: sensory perceptions in the absence of external stimuli. Auditory hallucinations (especially voices) and bizarre physical sensations are the most common.
• Abnormal affect: reduction in emotional intensity or variation as well as affective responses inappropriate or incongruous with respect to the context of communication.
• Disturbances in motor behaviour: adoption for a long time of bizarre posi- tions; repeated, aimless movement patterns; intense and disorganized activity or reduction of spontaneous movements with an apparent lack of awareness of surroundings.

In the seminal International Pilot Study of Schizophrenia, carried out by WHO, auditory hallucinations and ideas of reference were the most frequently observed symptoms, found in about 70% of patients (WHO, 1973). This, cannot hold true, however, in all social or cultural groups.

Furthermore, considerable empirical evidence points to a continuity between most psychotic symptoms and ordinary experience. The tendency to bizarre thinking and peculiar sensory experiences is spread across the population more widely than is usually acknowledged by clinicians (Claridge, 1990). Therefore, symptom assessment may be a threshold issue and should always be seen within the context of the person’s overall emotional state and social functioning.

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Chapter 3

Epidemiology

3.1 Incidence and prevalence

The distribution of a disorder in a given population is measured in terms of incidence and prevalence. Incidence refers to the proportion of new cases per unit of time (usually one year), while prevalence refers to the proportion of existing cases (both old and new). Three types of prevalence rate can be used: point prevalence , which is a measure of the number of cases at a specific point in time; period prevalence , showing the number of cases over a defined period of time (usually six months or one year); and lifetime prevalence , reflecting the proportion of individuals who have been affected by a disorder at any time during their lives.

Incidence studies of relatively rare disorders, such as schizophrenia, are diffi- cult to carry out. Surveys have been carried out in various countries, however, and almost all show incidence rates per year of schizophrenia in adults within a quite narrow range between 0.1 and 0.4 per 1000 population. This has been the main finding from the WHO 10-country study (Jablensky et al., 1992).

Taking into account differences in diagnostic assessment, case-finding methods and definition of adulthood, we can say that the incidence of schizophrenia is remarkably similar in different geographical areas (Warner and de Girolamo, 1995). Exceptionally high rates that emerged from the Epidemiologic Catch- ment Area Study in the United States (Tien and Eaton, 1992) may be due to biased assessment. Although few data are available on incidence in developing countries, early assumptions on consistently lower rates outside the western industrialized countries have not been confirmed by recent thorough investi- gations in Asian countries (Lin et al., 1989; Jablensky et al., 1992; Rajkumar et al., 1991).

High incidence figures have recently been reported in some disadvantaged social groups – especially ethnic minorities in western Europe, such as Afro- Caribbean communities in the United Kingdom and immigrants from Surinam in the Netherlands (King et al., 1994; Selten and Sijben, 1994). Such findings, plagued by uncertainties about the actual size and age distribution of the populations at risk, still await convincing explanations.

In the last 15 years a variety of reports from several countries have suggested a declining trend in the number of people presenting for treatment of schizo- phrenia (Der et al., 1990). However, changes in diagnostic practices and patterns of care or more rigorous definitions of new cases as a result of im- proved recording systems, have not been ruled out as an explanation. So far, the case for a true decrease in incidence is suggestive but not proven (Jablensky, 1995).

Schizophrenia and public health^7

Much wider variation has been observed for prevalence, which has been more extensively studied. Point prevalence on adults ranges between 1 and 17 per 1000 population, one-year prevalence between 1 and 7.5 per 1000, and lifetime preva- lence between 1 and 18 per 1000 (Warner and de Girolamo, 1995). Variations in prevalence can be related to several factors, including differences in recovery, death and migration rates among the affected individuals.

Consistently lower point and period prevalence rates in almost all developing countries have usually been explained by most investigators as due to more favourable course and outcome of the disorder (Leff et al., 1992). However, other factors, such as increased mortality in patients with poor prognosis may contribute as well.

Pockets of high prevalence have been found in small areas of central and northern Europe, in some segregated groups in North America and in some populations living on the margin of the industrialized world, such as indig- enous peoples in Canada or Australia (Warner and de Girolamo, 1995). Genetic isolation or selective outmigration of healthier individuals can explain such findings. However, it has been suggested that social disruption caused by the exposure of culturally isolated communities to western lifestyles, may have increased the risk of schizophrenia in vulnerable individuals (Jablensky and Sartorius, 1975). Given the above figures, the number of people with schizo- phrenia around the world can be estimated at about 29 million, of whom 20 million live in developing or least developed countries.

3.2 Course and outcome

In recent years refinements in methodology have given rise to significant advances in the study of patterns of course and outcome in schizophrenia. This is especially important since the first definitions of the disorder about a century ago relied heavily on deteriorating course and poor outcome as a hallmark (Berrios and Hauser, 1988).

Recent research has focused on prospective studies of representative samples of first-onset cases using standardized assessment tools, well-defined diagnostic criteria and repeated follow-up assessments (Ram et al., 1992; Thara and Eaton, 1996).

The mode of onset can be defined as acute, in which a florid psychotic state develops within days or weeks, or insidious, in which there is a gradual transi- tion from premorbid personality through prodromal symptoms to overt psychotic illness.

Impairment of social and interpersonal functioning prior to the onset of the disorder can be found in up to 50% of patients. The frequency of different types of onset shows marked variations by location. In India and Nigeria acute onset has been observed in 70-80% of patients, in contrast with less than 50% in the United States and Europe (Jablensky et al., 1992).

Schizophrenia and public health^9

female gender, late onset, good premorbid social functioning and acute presentation with florid positive symptoms.

The greatest variability in clinical morbidity is found in the initial stages after the onset. After five years the course is less likely to display major fluctuations, although a slight trend towards clinical improvement in old age can be ob- served (Ciompi, 1980).

The more optimistic picture emerging from recent studies should not, how- ever, lead us to overlook the fact that in about 60% of cases schizophrenia runs a prolonged course.

3.3 Risk factors

Risk factors for schizophrenia can be grouped according to Cooper (1978) in three categories:

• sociodemographic characteristics;
• predisposing factors;
• precipitating factors.

Within the first category, the association between lower social class and schizo- phrenia in urban areas of developed countries is one of the most robust epide- miological findings. This is currently explained mainly by the selection-drift hypothesis, according to which individuals vulnerable to schizophrenia or with insidious onset of the disorder are either prevented from attaining higher class status or move progressively downward (Eaton et al., 1988). However, it is possible that factors related to environmental conditions in lower class neigh- bourhoods, such as occupational hazards, poor maternal and obstetric care or high psychosocial stressors, can play a role in some subgroups of people with schizophrenia. Moreover, it should be noted that in non-western countries, such as India and elsewhere, the opposite pattern has been observed: preva- lence of schizophrenia is greater in highest social groups (Nandi et al., 1980). The complex social class-related factors leading to varying patterns of occur- rence of schizophrenia in different countries need further investigation.

The findings for marital status are remarkable as well. The risk ratio for unmar- ried individuals in comparison with their married counterparts is around 4 (Eaton et al., 1988). Although this is probably related to a selection process analogous to that described for social class, there are some suggestions that marriage, as well as any close interpersonal relationship, could act as a protec- tive factor.

Among the predisposing factors, genetic ones are most important. Genetic contribution to liability for schizophrenia has been well established and is estimated around 60% (Kendler and Diehl, 1993), although models of genetic transmission, predisposing genes and the link between genetic factors and the phenomenology of schizophrenia are far from being identified. Available data

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leave considerable room for environmental influences, as shown by concord- ance rates of less than 50% in monozygotic twins and lifetime risk of about 45% in children of two schizophrenic parents. Only 10% of people with schizo- phrenia have an affected parent (Gottesman, 1991). Given the heterogeneous nature of schizophrenic disorders, it is also possible that both genetic and non- genetic forms of the disorder exist.

The role of pregnancy and birth complications is less certain. Overall, the evidence suggests that a subgroup of people who later develop schizophrenia will have experienced a greater number of such problems (McNeil, 1995), although the strength of the association is not impressive. Moreover, this can simply be an aspect of a trend towards increased rates of psychopathology in persons who have suffered perinatal damage.

Among the variety of interpersonal, social and cultural variables postulated as precipitating factors, family environment remains the best documented. A large body of research shows that family interaction patterns characterized by unclear or fragmented communication, negative affective style, criticism, hostility and over involvement are strong predictors of relapse in schizophrenia, although evidence of their influence on onset is quite limited (Miklowitz, 1994). There are also indications that other less defined aspects of family environment may exert protec- tive effects on vulnerable individuals (Tienari et al., 1989).

3.4 Comorbidity

In recent years, a number studies of diagnostic patterns in both clinical and community samples have shown that comorbidity among mental disorders is fairly common (Kessler, 1995). Schizophrenia is no exception: the risk in people with schizophrenia of meeting criteria for other mental disorders is many times higher than in the general population. In relation to treatment and prognostic issues, comorbidity with depression and substance abuse is espe- cially relevant.

The percentage of people with schizophrenia showing at any point in time clinically significant depressed mood is at least 25% (Roy et al., 1983). Depres- sive symptoms can be observed mainly in the early stages of a psychotic relapse or following recovery from psychosis. Patients experiencing depression when in remission from a psychotic episode, at a time of increasing insight into their illness, are at high risk of suicide. This is especially true for young males with good premorbid functioning and high expectations, showing self-reported or perceived hopelessness (Caldwell and Gottesman, 1990).

Substance abuse associated with schizophrenia has emerged over the past few years as a major problem, particularly in western countries. In the United States lifetime prevalence of substance abuse or dependence in persons with schizophrenia has been estimated at over 30% for alcohol and around 25% for illicit drugs (Regier et al., 1990). Prevalence of smoking has been reported at

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Chapter 4

Consequences of schizophrenia

4.1 Mortality

Although schizophrenia is not in itself a fatal disease, death rates of people with schizophrenia are at least twice as high as those in the general population. The excess mortality has been related in the past to poor conditions of pro- longed institutional care, leading to high occurrence of tuberculosis and other communicable diseases (Allebeck, 1989). This may still be an important problem wherever large numbers of patients spend a long time in crowded asylum-like institutions.

However, recent studies of people with schizophrenia living in the community showed suicide and other accidents as leading causes of death in both develop- ing and developed countries (Jablensky et al., 1992). Suicide, particularly, has emerged as a growing matter of concern, since lifetime risk of suicide in schizophrenic disorders has been estimated at above 10%, which is about 12 times that of the general population (Caldwell and Gottesman, 1990). There seems to be an increased mortality for cardiovascular disorders as well (Allebeck, 1989), possibly related to unhealthy lifestyles, restricted access to health care or the side-effects of antipsychotic drugs.

4.2 Social disability

According to the International classification of impairments, disability and handicaps (WHO, 1980) impairment represents any loss or abnormality of psychological, physiological or anatomical structure or function, while disabil- ity is any restriction or lack (resulting from an impairment) of ability to per- form an activity in the manner or within the range considered normal for an individual in his or her socio-cultural setting.

In mental disorders, such as schizophrenia, disability can affect social function- ing in various broad areas (Janca et al., 1996), namely:

• self-care, which refers to personal hygiene, dressing and feeding;
• occupational performance, which refers to expected functioning in paid activities, studying, homemaking;
• functioning in relation to family and household members, which refers to expected interactions with spouses, parents, children or other relatives;
• functioning in a broader social context, which refers to socially appropriate interaction with community members, and participation in leisure and other social activities.

Schizophrenia and public health^13

Data from European and North American studies show persisting disability of moderate or severe degree in about 40% of males with schizophrenia, in contrast with 25% of females (Shepherd et al., 1989). Substantially lower figures have been found in India, Africa and Latin America (Leff et al., 1992). Global assessment of disability, however, hides wide variations across life domains, which can be affected in different ways.

There is good evidence that for most patients nature and extent of social disability are more relevant as outcome indicators than clinical symptoms.

4.3 Social stigma

Social stigma refers to a set of deeply discrediting attributes, related to negative attitudes and beliefs towards a group of people, likely to affect a person’s identity and thus leading to a damaged sense of self through social rejection, discrimination and social isolation (Goffman, 1963). Stigma is strongly linked with the label of mentally ill and is, to a certain extent, unrelated to the actual characteristics or behaviours of those stigmatized. Various adverse conse- quences may arise from the stigmatization process: use of pejorative language, barriers to housing or employment, restricted access to social services, fewer chances for marriage, increased mistreatment and institutionalization (Desjarlais et al., 1995).

Stigma is deeply rooted in the cultural background of society. Some observers have pointed out that it is less pervasive in most rural societies (Warner, 1985), but this assumption has been challenged by cross-cultural studies (Fabrega jr., 1991). There is no convincing evidence that there are cultures in which stigma is not attached to major mental disorders, whatever theories people hold about their causes, although the process of negative labelling may concern different groups across cultures and the level of stigma may vary.

Stigma operates however, not only in the larger community but within the mental health services as well. It may even be found at the level of the affected individuals as internalized negative self-perception (Carling, 1995).

Undoubtedly, stigma represents a major challenge with regard to the integra- tion of persons with schizophrenia and other mental disorders into the com- munity. Many first-person accounts from people with experience of mental disorder vividly portray the painful effects of stigmatization on their everyday lives (Leete, 1982).

Stigma also acts as a powerful barrier to treatment, not only because of the fear of being labelled as mentally ill, but also because too often mental health professionals and mental health services as a whole hold, often in a subtle way, negative or rejecting attitudes towards users and perpetuate practices fostering segregation, dependency and powerlessness (Deegan, 1990).