The British Journal of Psychiatry (2007) 191: s15-s20. doi: 10.1192/bjp.191.50.s15
© 2007 The Royal College of Psychiatrists
Social outcomes in schizophrenia
Stefan Priebe, FRCPsych
Unit for Social and Community Psychiatry, Newham Centre for Mental
Health, Glen Road, London E13 8SP, UK. E-mail:
S.Priebe{at}qmul.ac.uk
Declaration of interest None.

ABSTRACT
Background Outcomes reflecting the social situation are widely
considered as important in the treatment of people with schizophrenia.
Aims To review concepts of social outcomes in schizophrenia and the
corresponding assessment instruments.
Method Non-systematic literature review and reflection on conceptual
and methodological issues.
Results Concepts of social outcomes in schizophrenia lack agreed
definitions and theoretical models. A fundamental issue is the distinction
between objective and subjective indicators. More research has focused on
subjective indicators, which are only weakly correlated with objective are
only weakly correlated with objective life situation and show consistent
correlations with mood. Various assessment instruments have been developed
pragmatically, particularly to measure quality of life and social functioning,
and the literature provides extensive data for comparison.
Conclusions Established instruments exist to measure social outcomes
in schizophrenia. Their use requires an awareness of the specific strengths
and limitations.

INTRODUCTION
Since the beginning of systematic outcome assessment in schizophrenia
in
the 1960s, there has been a wide consensus among researchers
and clinicians
that capturing psychopathological symptoms alone
is not sufficient to reflect
relevant outcomes. Particularly
for evaluating long-term outcomes, information
on the social
situation of patients is regarded as essential. Social outcomes
assess how patients live, function in society and perform their
various
roles.
Social outcomes are commonly used throughout healthcare. Yet, there are
some specific reasons for their popularity in the treatment of
schizophrenia:
- The disorder is often persistent and affects patients lifelong. Symptoms
and the associated distress may fluctuate, and establishing symptoms at any
point in time might therefore yield a less relevant picture than the more
stable social situation.
- Longitudinal research has shown that antipsychotic medication can reduce
productive symptoms and prevent relapses with subsequent re-hospitalisation.
Yet, this effect was not necessarily linked with an improved social situation.
Symptom improvement and prevention of relapses alone do not make patients
necessarily more likely to complete education, find employment and have social
relationships. These outcomes need therefore to be assessed separately from
symptoms.
- As a result of mental health reforms in most high-income countries, the
focus of care has shifted from the asylum to the community. Former long-term
hospitalised patients were discharged, and there was an interest in how they
fared in the community without the institutional protection of the asylum.
- Mental health reforms have been associated with the formation of patient
organisations. Such organisations have acquired an important voice in debates
on mental health policies and commonly demand that social outcomes are given
more prominence in both research and practice.
Other stakeholder groups often share the perspective of patient
organisations. In public and professional debates on mental healthcare, it is
often felt that what really matters is how patients live (e.g. whether they do
or do not have a job and friends) rather than symptoms of illness.

IMPACT OF TREATMENT ON SOCIAL OUTCOMES
How can treatment of schizophrenia affect social outcomes? There
are at
least three possible mechanisms:
- Treatment can improve psychopathological symptoms. A lower symptom level
can enable people with schizophrenia to function and perform better in their
social context and subsequently achieve more favourable social outcomes.
- Treatment may have an impact not only on conventional psychopathological
symptoms, but also on other cognitive and social deficits that are illness
related, but are usually not captured in psychopathological assessments (e.g.
the concept of social cognition, which has received wide attention in the past
5 years). If treatment diminishes deficits in social cognition, patients might
be more likely to establish and maintain useful relationships and improve
social outcomes.
- Some care interventions focus directly on social outcomes. For instance,
vocational rehabilitation programmes may improve the work situation, and the
effect is not mediated by a reduction of symptom levels or other
illness-related deficits.
Although the latter mechanism mainly applies to a range of social
management interventions, the other mechanisms can operate with all forms of
psychological, pharmacological and socio-therapeutic treatments. In practice
and research, the mechanisms can be intertwined in a complex way and are
difficult to disentangle. Yet, it may be concluded that social outcomes can be
used to assess the effects of all forms of treatment in schizophrenia.
Because of the indirect nature of the potential treatment effect on social
outcomes, they have been termed `distal', as opposed to the more `proximal'
outcome criterion of psychopathological symptoms
(Watts & Priebe, 2002).
The effect on social outcomes is less immediate than on symptoms, and
achieving improvements in a person's social situation usually takes time.

SOCIETAL CONTEXT AND CEILING EFFECTS
For the analysis of treatment effects on social outcomes, two
fundamental
issues should be considered. One is the dependency
of social outcomes on the
societal context. For example, the
likelihood of a person with schizophrenia
obtaining competitive
employment as a result of treatment will heavily depend
on
societal factors such as the general unemployment rate and legislation
for
the employment of people with disabilities. Thus, social
outcomes will rarely
be a function of treatment alone. Another
issue when using social outcomes for
evaluating treatment is
their distribution in the treated sample at baseline.
Psychopathological
symptoms define the illness and will always be at a
considerable
level at the beginning of treatment, which leaves room for
improvement.
To some extent, this also applied to social outcomes in many
studies when people with schizophrenia were discharged after
long-term
hospitalisation or began treatment in very unfavourable
circumstances.
However, there can be exceptions. It is possible
that people have symptoms of
schizophrenia but at the same
time hold a respectable and satisfactory social
position and
perform well in different societal roles. In such a case, no
treatment can improve the social situation. At best it can
help to maintain
the current level. Thus, unlike psychopathological
symptoms, treatment cannot
always aim to improve social outcomes,
and whether maintaining the given
social situation can be rated
a success is a difficult question and depends on
the quality
of the social situation before treatment.

CONCEPTS OF SOCIAL OUTCOMES
Different concepts have been used to reflect and summarise social
outcomes
in people with schizophrenia. These include standard
of living, quality of
life, social integration, social adaptation,
social functioning, social
integration, needs for care and,
more recently, social inclusion. None of
these concepts was
introduced into psychiatry on the basis of a theoretical
model.
If a theoretical literature existed in psychology and sociology
–
e.g. for the quality of life concept – it was
rarely considered when new
concepts were suggested and new
assessment tools were designed in
psychiatry.
The reason for introducing a new concept was commonly the intuitive appeal
of the term, which then led to efforts to find definitions and, subsequently,
develop corresponding assessment tools. There is no universally accepted
definition for any of the concepts, and each can be used and has been used in
various ways, depending on the perspective and interest of whoever uses them.
Since the 1980s researchers have published definitions and taken a pragmatic
and often ad hoc approach to developing operationalised methods for the
assessment. The operationalisation usually required some focus and narrowing
down of the various potential meanings of the concepts. As a result, there is
a tendency that all assessment instruments for social concepts lead to a
disappointment in at least some stakeholder groups because they do not exactly
reflect the specific or vague understanding of the concept in the given group.
To a different degree, this has happened whenever new concepts of social
outcomes have superseded previous concepts. Books on quality of life and
social functioning, the two dominating concepts, were published in the 1990s
(Tyrer & Casey 1993;
Katschnig et al,
1997; Priebe et al,
1999b) with limited conceptual and methodological
progress since.

OBJECTIVE AND SUBJECTIVE INDICATORS
Whatever concept is used in the assessment of social outcomes,
there are
objective and subjective indicators. Objective indicators
are facts about the
social situation, which – at least
in theory – can be objectively
and unequivocally assessed.
These include whether a patient does or does not
have employment,
a partner, independent accommodation and social contacts.
Such
`hard' outcomes are transparent, straightforward to interpret
and of
obvious relevance. Out of all outcome criteria in schizophrenia,
they arguably
have the highest appeal to the public and user
organisations. If a treatment
has a demonstrabable positive
effect on the employment of patients, to most
stakeholders
this will be more persuasive of its value than an impact on
scales assessing symptoms or other psychological constructs.
Objective indicators are important, widely accepted and relatively easy to
establish. Why is it then that they are not more widely used and reported in
studies on the outcome of treatment in schizophrenia? There are several
reasons:
- Objective aspects of the social situation are hard to influence and are
very `distal' outcome criteria. For example, pharmaceutical companies might
argue that influencing the objective social situation is too ambitious an aim
for treatment with antipsychotic medication, that demonstrating an impact on
the objective social situation would take much longer than the usual length of
clinical trials, and that such a criterion would be inappropriate because
pharmacological treatments were developed to reduce symptoms, not as
`employment-finding' drugs.
- Objective indicators tend to be difficult to change. Even over longer
periods people with schizophrenia will not easily move into competitive
employment, find a partner and achieve independent living. In a larger sample
some might improve on any one of these criteria, but seldom on all. For
meaningful statistical testing of changes over time, the different aspects
would have to be combined to have a sufficient frequency of changes and to
avoid multiple testing. Interestingly, such a combined measure of objective
indicators does not exist.
- Any outcome criterion may have problems with floor and ceiling effects but
this applies particularly to hard social outcomes. People who already are in
independent living and competitive employment cannot improve any
more, so that these criteria become meaningless as outcomes.
- Although objective indicators capture hard facts and are usually
straightforward to analyse, their interpretation requires values, and these
values can vary depending on cultural background, social context and
individual perspectives. For example, for most people being in employment is
clearly desirable, but how does one assess social outcome in a person who does
not want to work and can afford to live on other income? The dependency of the
assessment on values is even more obvious with respect to partnership and
social contacts. People might choose to live alone rather than being forced
into this as a result of illness-related impairment. One solution to this
dilemma is to ask patients about their expectations and aspirations, and
relate their social situation to their wishes. Following this approach, social
isolation would be a negative outcome only if the person would prefer to have
more contacts. This, however, goes beyond objective indicators and introduces
a subjective dimension.
Subjective indicators comprise patient ratings of feelings, thoughts and
views on their social situation. An appropriate description of the full range
of social indicators used in different concepts is beyond the scope of this
review, but it will focus on quality of life, which is the most frequently
used concept in social outcomes in the psychiatric literature.

QUALITY OF LIFE
Since the 1980s, quality of life has been increasingly used
as an outcome
criterion in psychiatric research. Commonly,
objective and subjective
indicators are considered. Lehman
et al
(
1982) introduced a
measurement approach, which assesses
personal characteristics, objective
indicators in different
domains of life and subjective quality of life in the
same
life domains. Subjective quality of life represents the person's
appraisal of their objective life conditions, mostly captured
by rating scales
of satisfaction with life domains and life
as a whole. The life domains
covered usually include work,
accommodation, family, social relations,
leisure, safety, finances,
and physical and mental health. The mean score of
the satisfaction
ratings – or similar subjective ratings – is
taken
as the level of subjective quality of life
(
Priebe et al,
1999a).
Patients' appraisal of their life is influenced by three major processes: a
comparison with original expectations and aspirations; a comparison with the
life situation and achievements of others; and an adaptation over time. The
latter two may be particularly relevant for people with chronic schizophrenia,
whose peer group is often people with similar impairments, and who may adapt
to circumstances that they might have found unsatisfactory many years earlier.
As a result, people with persistent disorders who often live in conditions
that seem adversarial and unpleasant to clinicians and observers, nevertheless
express relative satisfaction with their life
(Arns & Linney, 1993;
Awad et al, 1997;
Katschnig et al,
1997; Priebe et al,
1999b).
Correlations between objective and subjective indicators are reported to be
weak to moderate (ranging from 0.04 to 0.57;
Priebe & Fakhoury, 2007).
The low association between objective life situation and patients' subjective
appraisal has often been counterintuitive to clinicians and other observers,
who subsequently questioned the validity of patient ratings. Yet, if patients
are asked to give a subjective appraisal of their situation and express a high
satisfaction with how they live, there is hardly any external criterion based
on which such an appraisal may be disqualified. Thus, patients' views and
satisfaction ratings may look surprising to the independent observer, but need
to be respected as subjective indicators.
Assessment instruments
A range of scales, checklists and structured and semi-structured interviews
have been developed to assess quality of life in people with schizophrenia.
The results of scales assessing symptom levels, particularly of depression,
have been repeatedly reported as quality of life scores, although the scales
have been developed neither to assess quality of life nor to capture objective
and subjective indicators. These proxy measures will not be considered here.
Table 1 shows a number of
established scales that have been specifically developed to assess quality of
life and have been used in people with schizophrenia. The listed assessment
instruments for quality of life – and later social functioning –
were identified through a non-systematic and non-exhaustive literature search
and were selected on the basis of their use in research.
To assess quality of life in people with schizophrenia, generic,
health-related and disease-specific instruments can be used. Generic scales
can be applied to the general population and any group of people with health
problems, including schizophrenia. Scales often include questions on physical
and mental health, but these are not specific to any illness or treatment.
Results can be compared across groups with different characteristics and
disorders, irrespective of the type of intervention received. Examples are the
Quality of Life Interview (QLI; Lehman,
1983), the Lancashire Quality of Life Profile (LQOLP;
Oliver, 1991) and the
Manchester Short Assessment of Quality of Life (MANSA;
Priebe et al,
1999a).
Health-related quality of life measures are targeted to assess the quality
of life of samples with health problems irrespective of the type of illness
and interventions. Examples are the Medical Outcome Study Questionnaire (MOS),
which was modified and shortened to the 36-item Short-Form General Health
Survey (SF–36; Ware &
Sherbourne, 1992), and the EuroQOL–5D (EQ–5D;
EuroQol Group, 1990).
There are also disease-specific measures, and several of these have been
designed to assess the quality of life of people with schizophrenia. A widely
used disease-specific instrument is the Quality of Life Scale (QLS;
Heinrichs et al,
1984), which is a clinician rating scale with acceptable
psychometric properties. It was developed to assess symptom levels and
functional status of people with schizophrenia in longitudinal studies and
trials. Other, less widely used examples of disease-specific scales are the
Subjective Well-being under Neuroleptics Scale (SWN;
Naber, 1995) and the
Schizophrenia Quality of Life Scale (SQLS;
Wilkinson et al,
2000). These scales tend to capture symptoms, in particular mood
symptoms, and side-effects of antipsychotic medication. Although they may be
important in influencing quality of life, the labelling of these factors as
quality of life is questionable and can blur the concept. It might be
preferable to measure symptoms as symptoms and side-effects as side-effects,
instead of declaring them to be a direct indicator of quality of life.
There are differences in the use of the scales worldwide. In the USA, the
QLS, QLI and the Oregon Quality of Life Scale (OQLS;
Bigelow et al, 1991)
have been more widely used, whereas in Europe the LQOLP, the MANSA and the
EQ–5D are more popular. The previous use of an instrument and the
availability of data for comparison are powerful determinants of the choice of
instrument. Other determinants are the time to complete the instrument, the
requirements for training, the properties of the instrument, its overall
approach and exact content, and the purpose of the data collection.
Properties of instruments
With respect to instrument properties, the literature usually reports
psychometric characteristics such as validity, reliability and objectivity.
Yet, these terms are based on psychological test theory and the assumption
that there is a well-defined construct that needs to be measured. In the
assessment of social outcomes, one might argue that there is no well-defined
concept and psychological test theory does not apply. Are social outcomes
tested or are they simply assessed and documented? In the latter case,
assessment tools are methods to document objective indicators and patient
statements. The results on each question can – unlike in psychological
test theory – be directly interpreted. Items can be summarised in
scores, but the score does not necessarily reflect an underlying construct. To
be administered usefully in longitudinal assessments, scales still need to
have certain qualities, such as providing stable results over time in the
absence of changes in the person's social situation. Yet, this would not be a
conventional test–retest reliability because there is no construct to be
`tested'. This is a theoretical debate which, however, is important for
interpreting results of social outcome measures, and should be addressed in
the future development of new instruments.

SOCIAL FUNCTIONING
After quality of life, social functioning of people with schizophrenia
has
received the most extensive attention in the psychiatric
literature.
Instruments assessing social functioning capture
the capacity of a person to
function in different societal
roles and their actual social performance.
Table 2 shows instruments
to
assess social functioning in people with schizophrenia.
As in quality of life assessment, the selection of an instrument depends on
various factors, and an ideal scale for all purposes does not exist.

EMPIRICAL FINDINGS
The literature on social outcomes in general in people with
schizophrenia
and on their quality of life specifically is
vast. Some results cast light on
the strengths and weaknesses
of social outcomes, in particular subjective
indicators.
Subjective quality of life is less favourable in people with schizophrenia
who are younger, male, live alone or are homeless, have a high level of
education and are not employed (Lehman
et al, 1995; Priebe
et al, 1998; Priebe
& Fakhoury, 2007). Yet, these characteristics explain only a
small amount of the variance of subjective quality of life scores in clinical
samples. The most consistent and relevant factor influencing subjective
quality of life in people with schizophrenia is the level of
psychopathological symptoms, in particular mood. The more depressed a person
is the lower the subjective quality of life. This applies to both
cross-sectional and longitudinal associations
(Kaiser et al, 1997;
Priebe et al, 2000).
The causality of the association, however, is not straightforward. Depression
may lead to a negative appraisal of life, and, vice versa, a negative
experience of the life situation may lead to depression. Also, both depression
and negative appraisal may be symptoms of the same underlying cognitive and
affective processes. In any case, an assessment of subjective indicators of
social outcomes needs to control for mood as a potential confounding
factor.
Social outcomes have been used widely to evaluate the effects of different
treatment methods in schizophrenia. Although programmes aimed at improving the
social situation directly, such as vocational rehabilitation and discharge
from long-term hospitalisation (Priebe
et al, 2002), can have a substantial effect, such an
impact has only rarely been demonstrated for established pharmacological and
psychotherapeutic interventions (Corrigan
et al, 2003; Wiersma
et al, 2004).

CONCLUSIONS
Social outcomes have a high intuitive appeal and are called
for by
different stakeholder groups, including the public and
user organisations.
However, established scales to assess social
outcomes lack a theoretical
model, are not based on universally
agreed definitions, focus on a limited
number of aspects and,
subsequently, often lead to disappointment. The
distinction
between objective and subjective indicators appears to be
essential.
With respect to objective indicators, any routine documentation
and
trial should assess whether people have work, how they
live, and whether they
have social contacts. Future research
might benefit from a consistent
definition of the categories
used so that findings can be compared and
benchmarked across
studies and services. Statistical analyses would be helped
by
a method to synthesise different aspects of the objective living
situation
into one overall index.
The spectrum of measures to assess subjective indicators of social outcomes
is huge and growing every year. Some concepts, most notably subjective quality
of life and social functioning, have been extensively used in schizophrenia
research, yielding data for comparison and specific findings of interest.
Their strengths and weaknesses have been well documented. On balance, they
should be used to assess outcome and capture the central view of the patients
concerned. To use them appropriately, there are at least three requirements:
(a) whoever uses such concepts should be aware of the limitations and have a
good understanding of what the selected instrument actually assesses,
independent of the title of the scale; the contents of scales need to be
considered along with practical aspects, when the best instrument for the
given purpose is selected; (b) it is difficult to justify the use of more than
one instrument to assess subjective indicators of social outcomes in the same
study; what the scales assess is conceptually not distinct, and scores of
different instruments overlap (Fakhoury
et al, 2002); (c) symptom levels, and in particular mood,
need to be assessed and controlled for in any analysis of patient ratings of
social outcomes.
Rather than taking new appealing terms and pragmatically developing scales
to assess them, future work on improving assessment tools should be based on
defined theoretical models and take the existing empirical findings into
account.
Within psychiatry, schizophrenia research has led in the development of
methods to assess social outcomes. It is widely seen as mandatory to assess
social outcomes in epidemiological studies and clinical trials. The literature
provides sufficient evidence for the use of assessment instruments and
appropriate interpretation of the results. Yet, despite several decades of
research, more needs to be done to specify the concepts and develop better
assessment instruments. This requires approaches that are qualitatively new,
and not just more of the same.

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