Residence of incident cohort of psychotic patients after 13 years of follow upBMJ 1994; 308 doi: https://doi.org/10.1136/bmj.308.6932.813 (Published 26 March 1994) Cite this as: BMJ 1994;308:813
- Glynn Harrison, consultant psychiatrista,
- Peter Mason, senior registrar Mandala Centre, Nottinghama,
- Cristine Glazebrook, lecturer in behavioural sciencesa,
- Ian Medley, consultant psychiatrista,
- Tim Croudace, postgraduate researcha,
- Sarah Docherty, research assistanta
- a Department of Psychiatry, University Hospital, Nottingham NG7 2UH
- Department of Psychology, University of Nottingham, Nottingham
- Department of Psychiatry, Royal Liverpool Hospital, Liverpool
- Correspondence to: Dr Harrison
- Accepted 11 January 1994
Objective :To establish the residential history of an incident cohort of psychotic patients 13 years after their first contact with the psychiatric services.
Design :Tracing of all patients admitted to the WHO study on determinants of outcome of severe mental disorders in Nottingham between 1978 and 1980. Patients were assessed using standardised and comparable instruments, and extra information was obtained from key informants and medical records.
Setting :Catchment area of Nottingham psychiatric services.
Main outcome measures :Main place of residence over the previous two years and residential history over 13 years in terms of homelessness, imprisonment, and use of high dependency psychiatric facilities.
Results :95 patients were traced. At the point of follow up no patients were in long stay psychiatric wards, two were in supervised residence, none was homeless, and none was in prison or a high security hospital. 85 patients were living either independently alone or with their family or friends in the community. Of these, 44 had had no contact with the psychiatric services at the point of follow up.
Conclusions :Although many patients experienced a difficult early course of illness, the longer term outcome of the disorder was associated with remarkably low periods of homelessness and imprisonment and low use of intensive care facilities. These findings offer some reassurance, given the concerns about the effectiveness of community oriented care for this potentially most vulnerable group of psychiatric patients.
Recent studies have challenged earlier notions of the long term nature and poor outcome of schizophrenia and related psychoses
Over the longer term course of the illness many patients may experience recovery or substantial reduction in social disability
This study showed that in a complete and geographically based cohort of patients with their first onset of psychosis in 1978-80 none was homeless or in long stay accommodation and only two were in supervised accommodation 13 years later
During the 13 years 13 patients had experienced homelessness, prison, long stay wards, or supervised accommodation, an initial diagnosis of schizophrenia identifying those patients at most risk
These data offer some reassurance about the effectiveness of community care for schizophrenia
The popular view of schizophrenia is of a chronic deteriorating illness making long term demands on services and creating an almost intolerable burden for relatives and carers. Recent incidents of violence, and reports of homeless and destitute mentally ill patients, heighten public anxiety about the effectiveness of community care and cause schizophrenic patients to be perceived as inherently violent and disturbed people requiring intensive supervision over many years.
Many doctors hold similar, if somewhat less sensational, views about the long term nature of the disorder because of the work of the German psychiatrist Emil Kraepelin. Early this century he reported that less than 5% of schizophrenic patients achieved lasting recovery.1 Even the Swiss psychiatrist Eugene Bleuler, often credited with emphasising the cross sectional rather than longitudinal aspects of the illness, wrote several decades later that he had never discharged a patient from hospital in whom he “could not still see distinct signs of the disease.”2 In other words, once schizophrenic, always schizophrenic.
Such remarks helped perpetuate pessimistic notions about the longer term course of schizophrenia, and these held sway for over half a century. Faith in the incurability of the disease became so firmly entrenched that if patients recovered the diagnosis was thought to have been mistaken. In recent years, however, an emerging body of evidence has challenged these notions of poor outcome, suggesting that over the longer term many patients experience recovery. For example, the European studies of Bleuler3 and Ciompi4 showed a more promising longer term course in at least half of the patients investigated. Data from North America have been more conflicting, partly because of sampling biases, but the study in Vermont by Harding et al reported recovery or only mild impairment in over 60% of the original sample of “chronic back ward” patients followed up after 25 years.5
Long term follow up studies are notoriously difficult to carry out, however, and several methodological issues cloud the interpretation of their findings.6 Sampling biases and the completeness of case finding are particularly important and seriously limit the generalisability of nearly all the published studies. When relatives and patients view their future, and when service planners seek to target limited resources, there is little high quality information available about the natural course of schizophrenia and the factors that may affect it.
In 1978 a complete and representative sample of patients with their first onset of psychosis was identified in Nottingham, the field centre in the United Kingdom for the World Health Organisation's study on determinants of outcome of severe mental disorder.7 Attempts were made to identify, and include in a two year follow up study, every patient living in the catchment area of the Mapperley group of psychiatric hospitals in Nottingham (population 390 000) whose first ever contact with the psychiatric services for a potentially schizophrenic illness occurred over a period of two years.8 Screening was based on symptoms rather than diagnosis; the sample was not confined to inpatients but included every type of contact with the services. The method was based on a careful case finding design and included a subsequent “leakage” study using the Nottingham case register.
This cohort of patients were ideal for studying the long term outcome (mean 13 years) in psychiatric patients with first onset psychosis from a geographically defined area. The timing of the study is important because over the period of follow up (1978-92) the Nottingham psychiatric services underwent extensive reorganisation. The use of inpatient beds became steadily reduced and six community oriented mental health teams arranged in sectors were established.9 In the current study we established the residential history of this potentially most vulnerable group of patients, with particular reference to their use of long stay hospital wards, placement in supervised residences, and experience of homelessness and of imprisonment. This investigation was carried out as part of the WHO's coordinated study on the long term outcome of schizophrenia in different cultures.
Patients and methods
The method of case finding used in the original study and the mean annual incidence of schizophrenia are fully described elsewhere.8 Briefly, a total of 99 patients making their first ever contact with the psychiatric services were enrolled in the study between 1 August 1978 and 31 July 1980. Of these 99 patients, 67 met the criteria of the International Classification of Diseases, ninth edition (ICD-9) for definite or very likely schizophrenia; this was decided at consensus diagnostic meetings reviewing standardised assessments of mental state and data from informants. The mean annual incidence of schizophrenia was in the middle of the range reported from the other collaborating centres in the WHO study (2.6 per 10 000 population at risk aged 20-29).7 The remaining group of 32 psychotic patients had a heterogeneous group of paranoid disorders, atypical psychoses, and affective psychoses. All patients were given a diagnosis according to the Diagnostic and Statistical Manual of Mental Disorders, third edition, but because of the requirement of the presence of symptoms for at least six months to qualify for a diagnosis of schizophrenia the incidence was much lower (1.4 per 10 000 population at risk aged 20-29).
The mean (SD) age of the two year cohort was 29.7 (10.1) years. Thirty four patients were women and 65 men. Table I shows the main reasons for making contact with the psychiatric services. Social class based on occupation showed high unemployment and a skewed distribution towards the lower socioeconomic classes (table II). Only one patient was of no fixed abode at presentation (table II) but two others were living in temporary hostel accommodation. The general practitioner was the first point of contact in the process leading to psychiatric assessment for 74 patients; the means of presentation for eight patients was through the police.
After 31 July 1980 Cooper et al carried out several different types of checks to discover whether any cases of psychotic disorder had been missed during the screening process.8 These comprised checking with local psychiatrists in private practice, checking with two private hospitals that might have admitted schizophrenic patients from Nottingham during the study period, and checking the records of the Nottingham case register. This leakage study found nine patients who might have been legitimate candidates for inclusion in the study, but only three of these were judged to have schizophrenia categorised as certain or very likely. These patients were not included in the one and two year follow up studies.7
In the current 13 year follow up study of these patients a careful tracing exercise was carried out to establish the whereabouts of every patient in the original cohort. When patients had not been in contact with the services for several years approaches for an assessment were made after first checking with the general practitioner. Lengthy assessments were carried out with both patients and a key informant, and information was elicited from general practice records and hospital records whenever possible. Assessments included the present state examination, for reasons of comparability with earlier data, and the life chart schedule,10 which is an instrument developed in collaboration with the WHO to elicit longitudinal data on residence, symptoms, and treatment.
We report the findings for main residence over the most recent two years of the follow up period and residential history for the 13 years. For the purposes of this study, half way houses; hostels and flats provided by the rehabilitation services with full time, part time, or visiting staff; and nursing homes were defined as supervised residences. Homelessness was defined as any period of sleeping overnight in a public place or residence in a shelter for homeless people. Temporary accommodation with friends or relatives was not included in the definition of homelessness.
We were able to establish the whereabouts of all but four of the original 99 patients (96% trace rate). Nine patients had died (including three who had died in suspicious circumstances and four who had committed suicide). Sixty nine of the remaining patients had full assessments (including personal interviews and mental state assessments), and high quality information about the course and outcome of the disorder based on information available from records and informants was available on a further 15 patients; we could not find reliable data, other than on current residence, on the remaining two patients. Fifteen of the 95 patients (16%) who were eventually traced had moved away from Nottingham and were interviewed in their new locations, which ranged from Scotland to the Republic of Ireland.
The nine patients identified in the leakage study were also traced to eliminate possible selection bias. One patient was removed from the study because further data showed that she had had a history of psychosis that had not been elicited at the first contact. All of the remaining eight patients were traced, but they were not included in full assessment procedures because they had not been included in earlier one and two year follow up assessments and lacked baseline data. One patient died five years after first contact, having made no further contact with the psychiatric services; his death was unrelated to psychiatric disorder. The remaining seven patients all lived in the community, either alone or with family or friends, and only one had been in contact with the psychiatric services over the most recent two years. None was homeless, imprisoned, or living in any form of institution. Only three of these patients were diagnosed as having schizophrenia initially; one of them was the patient who died. We conclude therefore that the original cohort of 99 patients was a substantially complete and representative sample of psychotic patients making contact with the services in a large urban area.
Table III shows the main residence for the two years for the 99 psychotic patients. Surprisingly, most (85 out of 88 patients for whom information on residence for the previous two years was available) were living with their family or alone. None was homeless, in prison, or in long stay wards at the point of follow up. Only one patient (in an acute psychiatric ward) had spent any time homeless in the most recent two years. Of the 85 patients living in independent accommodation, only 17 were receiving visits from community psychiatric nurses or social workers. A further 24 were attending a depot injection clinic or psychiatric outpatient departments, leaving 44 who had no contact with specialist psychiatric services. When the schizophrenic patients were considered separately, the findings for current main residence were similar to those in the sample of psychotic patients as a whole, except that the three patients in supervised residence or in an acute psychiatric ward had all been diagnosed as having schizophrenia in the initial study.7
Residency during 13 years since first presentation
Information was available on 96 patients: one patient finally lost to follow up had information on residency until 1988 and seven patients until their deaths. Thirteen had experienced at least one of the following over the 13 years of follow up: residence in a long stay ward, placement in a supervised residence, homelessness or vagrancy, or imprisonment. Nine patients had been in supervised residence (including two in a probation hostel), and two patients spent some time in a long stay psychiatric ward. Six had been homeless (total time 55 months, range 3-12 months) and four had been in prison (total time 36 months, range 2-24 months). Of these 13 patients, 11 had been assigned an intial diagnosis of schizophrenia according to ICD-9 criteria, suggesting that a diagnosis of schizophrenia at onset identifies those patients at greater risk and with potentially higher dependency needs over the short to medium term of psychotic illness.
Schizophrenia does not have a natural history that unfolds independently of its cultural and social milieu. The psychiatric services in Nottingham aim to deliver a modern, community oriented style of service, and multidisciplinary teams in sectors have been established for over a decade. Our findings cannot therefore simply be generalised to other urban areas with different styles of psychiatric care. Nevertheless, our data show that, at a time of considerable change in the services, the long term outcome of schizophrenia and other psychotic disorders is associated with remarkably low amounts of homelessness and imprisonment and low use of high dependency services. These findings cannot be explained by differential loss of patients with the more unstable forms of psychotic disorders because the tracing rate was high. The epidemiological nature of the sample eliminates crude selection biases that might have arisen--for example, by including only inpatients from certain types of treatment facilities.
Schizophrenia and related psychotic disorders afflict about 1% of the population: most patients did not experience prison, destitution, or years in remote asylums. Sixteen per cent of our sample (11 out of 67 patients) had been cared for by high dependency services or had become homeless at some point in the course of the illness, but most were cared for satisfactorily in the community for most of the time. Although the early course of the illness had been difficult and represented a considerable burden of care for relatives, often also severely testing risk management strategies of the psychiatric services, over the longer term dependency needs were comparatively low.
Residence in the community 13 years on may not prove that these patients have fared any better than those in institutions, either in terms of measured disability or patients' satisfaction with their care. In addition, four subjects committed suicide (6% of patients with schizophrenia) and three more died in suspicious circumstances, an outcome which perhaps could have been avoided with more intensive care in hospital. Rates of suicide, however, are similar to those reported before the advent of community care,11 when almost half of all schizophrenic patients who committed suicide did so during their stay in hospital.12 We conclude that our data suggest that the longer term outcome of the disorder can be better than many people might predict.
With recent publicity given to tragic incidents concerning “discharged mental patients” and the plight of mentally ill people who are homeless13 14 or in prison,15 these data call for such concerns to be kept in perspective. A few patients, perhaps those who never make contact with the services or who do so only briefly, drift into increasing deprivation and isolation from services that may be poorly designed for their special needs. Such patients, supplemented by those prematurely discharged from hospital after years of living in an institution, exert a disproportionate effect on public perceptions of schizophrenia as a uniformly long term or dangerous disorder.
Recent findings of improved outcome in schizophrenia have led to the suggestion that the disorder may be undergoing a “benign metamorphosis.”16 Certainly, the almost complete disappearance of catatonic forms of the disorder in industrialised countries over recent decades points to changes in the pattern of symptoms over time. We have argued, however, that the methodological limitations of earlier follow up studies make it difficult to prove that there have been significant changes in the prognosis of schizophrenia6; indeed, a metamorphosis may be taking place in the attitudes and expectations of clinicians rather than in the disorder itself as more data become available. Whatever the reasons for changing perceptions about the course and outcome of schizophrenia our data further challenge notions of the unremitting long term nature of the disorder.
This paper is based on the data and experience obtained during the WHO project on determinants of outcome of severe mental disorder, a project sponsored by the World Health Organisation and funded by the World Health Organisation, the National Institute of Mental Health (United States), and the participating field research centres. A full list of investigators and staff is given in the report of the project.7 We thank Professor J E Cooper for allowing access to these data and for help with this project. This follow up study was supported by a grant provided by the Mental Health Foundation.