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s 1 5 REVIEW ARTICLE

AUTHOR’S PROOF

Social outcomes in schizophrenia commonly demand that social


outcomes are given more prominence
in both research and practice.
STEFAN PRIEBE
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
Background Outcomes reflecting the Since the beginning of systematic outcome
ON SOCIAL OUTCOMES
social situation are widely considered as assessment in schizophrenia in the 1960s,
there has been a wide consensus among
important in the treatment of people with How can treatment of schizophrenia affect
researchers and clinicians that capturing
schizophrenia. social outcomes? There are at least three
psychopathological symptoms alone is not
possible mechanisms:
sufficient to reflect relevant outcomes.
Aims To review concepts of social (a) Treatment can improve psychopatholo-
Particularly for evaluating long-term out-
outcomes in schizophrenia and the comes, information on the social situation gical symptoms. A lower symptom
corresponding assessment instruments. of patients is regarded as essential. Social level can enable people with schizo-
outcomes assess how patients live, function phrenia to function and perform better
Method Non-systematic literature in society and perform their various roles. in their social context and subsequently
review and reflection on conceptual and Social outcomes are commonly used achieve more favourable social
outcomes.
methodological issues. throughout healthcare. Yet, there are some
specific reasons for their popularity in the (b) Treatment may have an impact not only
Results Concepts of social outcomes in treatment of schizophrenia: on conventional psychopathological
symptoms, but also on other cognitive
schizophrenia lack agreed definitions and (a) The disorder is often persistent and
and social deficits that are illness
theoretical models. A fundamental issue is affects patients lifelong. Symptoms
related, but are usually not captured
and the associated distress may fluc-
the distinction between objective and in psychopathological assessments (e.g.
tuate, and establishing symptoms at
subjective indicators.More research has the concept of social cognition, which
any point in time might therefore yield
has received wide attention in the past
focused on subjective indicators, which a less relevant picture than the more
5 years). If treatment diminishes deficits
are only weakly correlated with objective stable social situation.
in social cognition, patients might be
life situation and show consistent (b) Longitudinal research has shown that more likely to establish and maintain
antipsychotic medication can reduce pro- useful relationships and improve social
correlations with mood.Various
ductive symptoms and prevent relapses outcomes.
assessment instruments have been with subsequent re-hospitalisation.
Yet, this effect was not necessarily (c) Some care interventions focus directly
developed pragmatically, particularly to
linked with an improved social situa- on social outcomes. For instance, voca-
measure quality of life and social tional rehabilitation programmes may
tion. Symptom improvement and
functioning, and the literature provides prevention of relapses alone do not improve the work situation, and the
extensive data for comparison. make patients necessarily more likely effect is not mediated by a reduction
to complete education, find employ- of symptom levels or other illness-
Conclusions Established instruments ment and have social relationships. related deficits.
existto measure social outcomes in These outcomes need therefore to be Although the latter mechanism mainly
schizophrenia.Their use requires an assessed separately from symptoms. applies to a range of social management
awareness of the specific strengths and (c) As a result of mental health reforms in interventions, the other mechanisms can
most high-income countries, the focus operate with all forms of psychological,
limitations.
of care has shifted from the asylum to pharmacological and socio-therapeutic
the community. Former long-term treatments. In practice and research, the
Declaration of interest None.
hospitalised patients were discharged, mechanisms can be intertwined in a com-
and there was an interest in how they plex way and are difficult to disentangle.
fared in the community without the Yet, it may be concluded that social out-
institutional protection of the asylum. comes can be used to assess the effects of
(d) Mental health reforms have been asso- all forms of treatment in schizophrenia.
ciated with the formation of patient Because of the indirect nature of the po-
organisations. Such organisations have tential treatment effect on social outcomes,
acquired an important voice in debates they have been termed ‘distal’, as opposed
on mental health policies and to the more ‘proximal’ outcome criterion

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AUTHOR’S PROOF
of psychopathological symptoms (Watts & on the basis of a theoretical model. If a on scales assessing symptoms or other
Priebe, 2002). The effect on social out- theoretical literature existed in psychology psychological constructs.
comes is less immediate than on symptoms, and sociology – e.g. for the quality of life Objective indicators are important,
and achieving improvements in a person’s concept – it was rarely considered when new widely accepted and relatively easy to es-
social situation usually takes time. concepts were suggested and new assessment tablish. Why is it then that they are not
tools were designed in psychiatry. more widely used and reported in studies
The reason for introducing a new con- on the outcome of treatment in schizo-
SOCIETAL CONTEXT
cept was commonly the intuitive appeal of phrenia? There are several reasons:
AND CEILING EFFECTS
the term, which then led to efforts to find (a) Objective aspects of the social situation
definitions and, subsequently, develop cor- are hard to influence and are very
For the analysis of treatment effects on so-
responding assessment tools. There is no ‘distal’ outcome criteria. For example,
cial outcomes, two fundamental issues
universally accepted definition for any of pharmaceutical companies might argue
should be considered. One is the depen-
the concepts, and each can be used and that influencing the objective social
dency of social outcomes on the societal
has been used in various ways, depending situation is too ambitious an aim for
context. For example, the likelihood of a
on the perspective and interest of whoever treatment with antipsychotic medi-
person with schizophrenia obtaining com-
uses them. Since the 1980s researchers have cation, that demonstrating an impact
petitive employment as a result of treat-
published definitions and taken a pragmatic on the objective social situation would
ment will heavily depend on societal
and often ad hoc approach to developing take much longer than the usual
factors such as the general unemployment length of clinical trials, and that such
operationalised methods for the assess-
rate and legislation for the employment of a criterion would be inappropriate
ment. The operationalisation usually re-
people with disabilities. Thus, social out- because pharmacological treatments
quired some focus and narrowing down of
comes will rarely be a function of treatment were developed to reduce symptoms,
the various potential meanings of the con-
alone. Another issue when using social out- not as ‘employment-finding’ drugs.
cepts. As a result, there is a tendency that
comes for evaluating treatment is their dis-
all assessment instruments for social con- (b) Objective indicators tend to be difficult
tribution in the treated sample at baseline.
cepts lead to a disappointment in at least to change. Even over longer periods
Psychopathological symptoms define the people with schizophrenia will not
some stakeholder groups because they do
illness and will always be at a considerable easily move into competitive employ-
not exactly reflect the specific or vague un-
level at the beginning of treatment, which ment, find a partner and achieve inde-
derstanding of the concept in the given
leaves room for improvement. To some ex- pendent living. In a larger sample
group. To a different degree, this has hap-
tent, this also applied to social outcomes in some might improve on any one of
pened whenever new concepts of social out-
many studies when people with schizo- these criteria, but seldom on all. For
comes have superseded previous concepts.
phrenia were discharged after long-term meaningful statistical testing of
Books on quality of life and social function-
hospitalisation or began treatment in very changes over time, the different
ing, the two dominating concepts, were
unfavourable circumstances. However, aspects would have to be combined to
published in the 1990s (Tyrer & Casey
there can be exceptions. It is possible that have a sufficient frequency of changes
1993; Katschnig et al,al, 1997; Priebe et al,
al,
people have symptoms of schizophrenia and to avoid multiple testing. Interest-
1999b
1999b) with limited conceptual and meth-
but at the same time hold a respectable ingly, such a combined measure of
odological progress since. objective indicators does not exist.
and satisfactory social position and per-
form well in different societal roles. In such (c) Any outcome criterion may have
a case, no treatment can improve the social problems with floor and ceiling effects
OBJECTIVE AND SUBJECTIVE
situation. At best it can help to maintain the but this applies particularly to hard
INDICATORS
current level. Thus, unlike psychopatholo- social outcomes. People who already
gical symptoms, treatment cannot always are in independent living and competi-
Whatever concept is used in the assessment
aim to improve social outcomes, and tive employment cannot improve any
of social outcomes, there are objective and
whether maintaining the given social situa- more, so that these criteria become
subjective indicators. Objective indicators meaningless as outcomes.
tion can be rated a success is a difficult
are facts about the social situation, which
question and depends on the quality of (d) Although objective indicators capture
– at least in theory – can be objectively
the social situation before treatment. hard facts and are usually straightfor-
and unequivocally assessed. These include
ward to analyse, their interpretation
whether a patient does or does not have
requires values, and these values can
CONCEPTS OF SOCIAL employment, a partner, independent ac-
vary depending on cultural back-
OUTCOMES commodation and social contacts. Such
ground, social context and individual
‘hard’ outcomes are transparent, straight- perspectives. For example, for most
Different concepts have been used to reflect forward to interpret and of obvious rele- people being in employment is clearly
and summarise social outcomes in people vance. Out of all outcome criteria in desirable, but how does one assess
with schizophrenia. These include standard schizophrenia, they arguably have the high- social outcome in a person who does
of living, quality of life, social integration, est appeal to the public and user organisa- not want to work and can afford
social adaptation, social functioning, social tions. If a treatment has a demonstrabable to live on other income? The depen-
integration, needs for care and, more re- positive effect on the employment of pa- dency of the assessment on values is
cently, social inclusion. None of these tients, to most stakeholders this will be even more obvious with respect to
concepts was introduced into psychiatry more persuasive of its value than an impact partnership and social contacts. People

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AUTHOR’S PROOF
might choose to live alone rather than and observers, nevertheless express relative the Manchester Short Assessment of
being forced into this as a result of satisfaction with their life (Arns & Linney, Quality of Life (MANSA; Priebe et al, al,
illness-related impairment. One solu- 1993; Awad et al, al, 1997; Katschnig et al,
al, 1999a
1999a).
tion to this dilemma is to ask patients 1997; Priebe et al,
al, 1999b
1999b). Health-related quality of life measures
about their expectations and aspira- Correlations between objective and are targeted to assess the quality of life of
tions, and relate their social situation subjective indicators are reported to be samples with health problems irrespective
to their wishes. Following this weak to moderate (ranging from 0.04 to of the type of illness and interventions. Ex-
approach, social isolation would be a 0.57; Priebe & Fakhoury, 2007). The low amples are the Medical Outcome Study
negative outcome only if the person association between objective life situation Questionnaire (MOS), which was modified
would prefer to have more contacts.
and patients’ subjective appraisal has often and shortened to the 36-item Short-Form
This, however, goes beyond objective
been counterintuitive to clinicians and General Health Survey (SF–36; Ware &
indicators and introduces a subjective
other observers, who subsequently ques- Sherbourne, 1992), and the EuroQOL–5D
dimension.
tioned the validity of patient ratings. Yet, (EQ–5D; EuroQol Group, 1990).
Subjective indicators comprise patient if patients are asked to give a subjective ap- There are also disease-specific mea-
ratings of feelings, thoughts and views on praisal of their situation and express a high sures, and several of these have been de-
their social situation. An appropriate de- satisfaction with how they live, there is signed to assess the quality of life of
scription of the full range of social indica- hardly any external criterion based on people with schizophrenia. A widely used
tors used in different concepts is beyond which such an appraisal may be disquali- disease-specific instrument is the Quality
the scope of this review, but it will focus fied. Thus, patients’ views and satisfaction of Life Scale (QLS; Heinrichs et al, al, 1984),
on quality of life, which is the most fre- ratings may look surprising to the indepen- which is a clinician rating scale with ac-
quently used concept in social outcomes in dent observer, but need to be respected as ceptable psychometric properties. It was
the psychiatric literature. subjective indicators. developed to assess symptom levels and
functional status of people with schizo-
QUALITY OF LIFE phrenia in longitudinal studies and trials.
Assessment instruments Other, less widely used examples of
Since the 1980s, quality of life has been in- A range of scales, checklists and structured disease-specific scales are the Subjective
creasingly used as an outcome criterion in and semi-structured interviews have been Well-being under Neuroleptics Scale
psychiatric research. Commonly, objective developed to assess quality of life in people (SWN; Naber, 1995) and the Schizophrenia
and subjective indicators are considered. with schizophrenia. The results of scales Quality of Life Scale (SQLS; Wilkinson et
Lehman et al (1982) introduced a measure- assessing symptom levels, particularly of al,
al, 2000). These scales tend to capture
ment approach, which assesses personal depression, have been repeatedly reported symptoms, in particular mood symptoms,
characteristics, objective indicators in dif- as quality of life scores, although the scales and side-effects of antipsychotic medi-
ferent domains of life and subjective quality have been developed neither to assess qual- cation. Although they may be important
of life in the same life domains. Subjective ity of life nor to capture objective and sub- in influencing quality of life, the labelling
quality of life represents the person’s ap- jective indicators. These proxy measures of these factors as quality of life is question-
praisal of their objective life conditions, will not be considered here. Table 1 shows able and can blur the concept. It might be
mostly captured by rating scales of satisfac- a number of established scales that have preferable to measure symptoms as symp-
tion with life domains and life as a whole. been specifically developed to assess quality toms and side-effects as side-effects, instead
The life domains covered usually include of life and have been used in people with of declaring them to be a direct indicator of
work, accommodation, family, social rela- schizophrenia. The listed assessment instru- quality of life.
tions, leisure, safety, finances, and physical ments for quality of life – and later social There are differences in the use of the
and mental health. The mean score of the functioning – were identified through a scales worldwide. In the USA, the QLS,
satisfaction ratings – or similar subjective non-systematic and non-exhaustive litera- QLI and the Oregon Quality of Life Scale
ratings – is taken as the level of subjective ture search and were selected on the basis (OQLS; Bigelow et al, al, 1991) have been
quality of life (Priebe et al,
al, 1999a
1999a). of their use in research. more widely used, whereas in Europe the
Patients’ appraisal of their life is influ- To assess quality of life in people with LQOLP, the MANSA and the EQ–5D are
enced by three major processes: a compari- schizophrenia, generic, health-related and more popular. The previous use of an in-
son with original expectations and disease-specific instruments can be used. strument and the availability of data for
aspirations; a comparison with the life Generic scales can be applied to the general comparison are powerful determinants of
situation and achievements of others; and population and any group of people with the choice of instrument. Other deter-
an adaptation over time. The latter two health problems, including schizophrenia. minants are the time to complete the instru-
may be particularly relevant for people Scales often include questions on physical ment, the requirements for training, the
with chronic schizophrenia, whose peer and mental health, but these are not specific properties of the instrument, its overall ap-
group is often people with similar impair- to any illness or treatment. Results can be proach and exact content, and the purpose
ments, and who may adapt to circum- compared across groups with different of the data collection.
stances that they might have found characteristics and disorders, irrespective
unsatisfactory many years earlier. As a of the type of intervention received. Exam-
result, people with persistent disorders ples are the Quality of Life Interview (QLI; Properties of instruments
who often live in conditions that seem Lehman, 1983), the Lancashire Quality of With respect to instrument properties, the
adversarial and unpleasant to clinicians Life Profile (LQOLP; Oliver, 1991) and literature usually reports psychometric

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AUTHOR’S PROOF
Table
Table 1 Instruments designed for the assessment of quality of life

Instrument Acronym Reference(s) Number of Number of


items domains

Client Quality of Life Interview CQLI Mulkern et al (1986) 65 8


EuroQOL^5D
uroQOL^5D EQ^5D EuroQol Group (1990) 15 5
Index of Health Related Quality of Life Not defined Rosser et al (1992) 107, 225 3
Lancashire Quality of Life Profile LQOLP Oliver (1991) 100 11
Manchester Short Assessment of Quality of Life MANSA Priebe et al (1999a
(1999a ) 25 12
Munich Quality of Life Dimensions List MLDL Heinisch et al (1991) 20 4
Oregon Quality of Life Scale OQLS Bigelow et al (1991) 146 14
Quality of Life Checklist QLC Malm et al (1981) 93 11
Quality of Life Interview QLI Lehman (1983) 143 8
Quality of Life Scale QLS Heinrichs et al (1984) 21 21
Satisfaction with Life Domains Scale SLDS Baker & Intagliata (1982) 15 15
Schizophrenia Quality of Life Scale SQLS Wilkinson et al (2000) 30 3
Smithkline Beecham Quality of Life SBQOL Dunbar et al (1992) 78 23
Subjective Well-
ell-being under Neuroleptics Scale SWN Naber (1995) 38 5
Well-B
ell-Being
eing Project Client Interview Not defined Campbell et al (1989) 151, 76 and 77 60
World Health Organization Quality of Life Instrument ^ Brief
Brief WHOQOL^BREF World Health Organization Quality 268 4
of Life Group (1998)

characteristics such as validity, reliability most extensive attention in the psychiatric subjective quality of life. This applies to
and objectivity. Yet, these terms are based literature. Instruments assessing social both cross-sectional and longitudinal
on psychological test theory and the as- functioning capture the capacity of a person associations (Kaiser et al,al, 1997; Priebe et
sumption that there is a well-defined con- to function in different societal roles and al,
al, 2000). The causality of the association,
struct that needs to be measured. In the their actual social performance. Table 2 however, is not straightforward. Depres-
assessment of social outcomes, one might shows instruments to assess social function- sion may lead to a negative appraisal of life,
argue that there is no well-defined concept ing in people with schizophrenia. and, vice versa, a negative experience of the
and psychological test theory does not ap- As in quality of life assessment, the life situation may lead to depression. Also,
ply. Are social outcomes tested or are they selection of an instrument depends on both depression and negative appraisal
simply assessed and documented? In the lat- various factors, and an ideal scale for all may be symptoms of the same underlying
ter case, assessment tools are methods to purposes does not exist. cognitive and affective processes. In any
document objective indicators and patient case, an assessment of subjective indicators
statements. The results on each question EMPIRICAL FINDINGS of social outcomes needs to control for
can – unlike in psychological test theory – mood as a potential confounding factor.
be directly interpreted. Items can be sum- The literature on social outcomes in general Social outcomes have been used widely
marised in scores, but the score does not ne- in people with schizophrenia and on their to evaluate the effects of different treatment
cessarily reflect an underlying construct. To quality of life specifically is vast. Some methods in schizophrenia. Although pro-
be administered usefully in longitudinal as- results cast light on the strengths and weak- grammes aimed at improving the social
sessments, scales still need to have certain nesses of social outcomes, in particular situation directly, such as vocational rehab-
qualities, such as providing stable results subjective indicators. ilitation and discharge from long-term
over time in the absence of changes in the Subjective quality of life is less favour- hospitalisation (Priebe et al, al, 2002), can
person’s social situation. Yet, this would able in people with schizophrenia who are have a substantial effect, such an impact
not be a conventional test–retest reliability younger, male, live alone or are homeless, has only rarely been demonstrated for
because there is no construct to be ‘tested’. have a high level of education and are not established pharmacological and psycho-
This is a theoretical debate which, however, employed (Lehman et al, al, 1995; Priebe et therapeutic interventions (Corrigan et al, al,
is important for interpreting results of al,
al, 1998; Priebe & Fakhoury, 2007). Yet, 2003; Wiersma et al, al, 2004).
social outcome measures, and should be these characteristics explain only a small
addressed in the future development of amount of the variance of subjective quality CONCLUSIONS
new instruments. of life scores in clinical samples. The most
consistent and relevant factor influencing Social outcomes have a high intuitive ap-
SOCIAL FUNCTIONING subjective quality of life in people with peal and are called for by different stake-
schizophrenia is the level of psychopatholo- holder groups, including the public and
After quality of life, social functioning of gical symptoms, in particular mood. The user organisations. However, established
people with schizophrenia has received the more depressed a person is the lower the scales to assess social outcomes lack a

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Table
Table 2 Instruments for the assessment of social functioning

Instrument Acronym Reference(s) Number of Number of


items domains

Global Assessment of Functioning Scale GAF Endicott et al (1976) 1 1


Katz Adjustment Scale KAS Katz & Lyerly (1963) 138 3
(patient version),
205
(relative version)
KDS^15 Marital
Marital Questionnaire KDS^15 Frank & Kupfer (1974) 80 5
Levels of Functioning Scale Not defined Strauss & Carpenter (1972) 4 2
Life Skills Profile LSP Rosen et al (1989) 39 5
MOS Short
Short-F
-Form
orm General Health Survey SF^36 Ware & Sherbourne (1992) 36 8
Multnomah Community Ability Scale MCAS Barker et al (1994) 17 4
Normative Social Adjustment Scale NSAS Barrabee et al (1955) 27 4
Psychosocial Adjustment to Illness Scale PAIS Derogatis (1976) 45 7
Social Adjustment Scale SAS Paykel et al (1971) 48 6
Social Adjustment Scale ^ Self
Self Report SAS^SR Weissman & Bothwell (1976); 42 6
McDowell & Newell (1987)
Social Behaviour Schedule SBS Wykes & Sturt (1986) 30 21
Social Dysfunction Index SDI Munroe-Blum et al (1996) 27 9
Social Dysfunction Rating Scale SDRS Linn et al (1969); 21 3
McDowell & Newell (1987)
Social Functioning Questionnaire SFQ Tyrer (1990) 8 6
Social Functioning Scale SFS Birchwood et al (1990) 70 7
Social Functioning Schedule SFS Remington & Tyrer (1979) NA 12
Social Role Adjustment Instrument SRAI Cohler et al (1968) 200 5
Standardised Interview to Assess Maladjustment Not defined Clare & Cairns (1978) 42 6
Structured and Scaled Interview to Assess Maladjustment SSIAM Gurland et al (1972) 60 5

NA, not applicable.

theoretical model, are not based on univer- weaknesses have been well documented. assessment tools should be based on
sally agreed definitions, focus on a limited On balance, they should be used to assess defined theoretical models and take the
number of aspects and, subsequently, often outcome and capture the central view of existing empirical findings into account.
lead to disappointment. The distinction the patients concerned. To use them appro- Within psychiatry, schizophrenia re-
between objective and subjective indicators priately, there are at least three require- search has led in the development of meth-
appears to be essential. With respect to ments: (a) whoever uses such concepts ods to assess social outcomes. It is widely
objective indicators, any routine documen- should be aware of the limitations and have seen as mandatory to assess social out-
tation and trial should assess whether a good understanding of what the selected comes in epidemiological studies and clini-
people have work, how they live, and instrument actually assesses, independent cal trials. The literature provides sufficient
whether they have social contacts. Future of the title of the scale; the contents of evidence for the use of assessment instru-
research might benefit from a consistent de- scales need to be considered along with ments and appropriate interpretation of
finition of the categories used so that find- practical aspects, when the best instrument the results. Yet, despite several decades of
ings can be compared and benchmarked for the given purpose is selected; (b) it is research, more needs to be done to specify
across studies and services. Statistical ana- difficult to justify the use of more than the concepts and develop better assessment
lyses would be helped by a method to one instrument to assess subjective indica- instruments. This requires approaches that
synthesise different aspects of the objective tors of social outcomes in the same study; are qualitatively new, and not just more
living situation into one overall index. what the scales assess is conceptually not of the same.
The spectrum of measures to assess distinct, and scores of different instruments
subjective indicators of social outcomes is overlap (Fakhoury et al,al, 2002); (c) symp- REFERENCES
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