Disability and schizophrenia: a systematic review of experienced psychosocial difficulties

Background Schizophrenia is a significantly disabling disease that affects all major areas of life. There is a lack of comprehensive synthesis of research findings on the full extent of psychosocial difficulties (PSDs) experienced by people living with schizophrenia. This paper provides a systematic review of the literature concerning PSDs and their associated factors in schizophrenia. PSDs were conceptualized in accordance with the International Classification of Functioning, Disability and Health (ICF) as disabilities, in particular impairments of mental functions, activity limitations and participation restrictions. Methods An electronic search using MEDLINE and PsychINFO plus a manual search of the literature was performed for qualitative and longitudinal studies published in English between 2005 and 2010 that examined PSDs in persons with schizophrenia. The ICF was used as a conceptual framework. Results A total of 104 papers were included. The most frequent PSDs addressed in the literature were not specific ones, directly linkable to the ICF categories of mental functions, activity limitations or participation restrictions, but broad areas of psychosocial functioning, such as psychopathological symptoms (53% of papers) or global disability and functioning (37%). Among mental functions, the most extensively studied were cognitive functions (27%) and emotional functions (27%). Within the domain of activities and participation, the most widely investigated were difficulties in relationships with others (31%) and employment (20%). Of the factors associated with the intensity or course of PSDs, the most commonly identified were treatment modalities (56%), psychopathological symptoms (26%), and socio-demographic variables (24%). Medication tended to improve the most relevant PSD, but at the same time was the only consistently reported determinant of onset of PSDs (emerging as unwanted side-effects). Conclusions The present review illustrates the remarkably broad scope and diversity of psychosocial areas affected in schizophrenia and shows how these areas are interconnected and how they interact with contextual factors. The need for a shift in focus of schizophrenia research is suggested – from an excessive reliance on global measures of psychopathology and disability for defining outcomes to the creation of profiles of specific PSDs that have a more direct bearing on the disabling experience and real-world functioning of patients and can serve to guide interventions and monitoring over time.

1 year n/a 53 patients with chronic schizophrenia, 50 patients with firstepisode psychosis, 55 non-psychiatric controls To test the hypothesis that facial affect recognition is a mediator between cognitive and social functioning.
Both the first-episode and multiepisode groups were found to be impaired relative to non-psychiatric controls in cognition, social functioning and facial affect recognition. There were significant associations among facial affect recognition, cognition and social functioning in all three groups. For the patient groups, but not healthy controls, there was evidence that facial affect recognition did partially mediate the relationship between cognitive and social functioning. 2. (Addington et al., 2006) Canada longitudinal observational study 1 year n/a 53 patients with chronic schizophrenia, 50 patients with firstepisode psychosis, 55 non-psychiatric controls To test the hypotheses that (a) deficits in social perception were associated with deficits in social functioning and cognition and (b) that social perception mediated between cognitive and social functioning.
People with schizophrenia were found to have deficits in social knowledge and social perception relative to healthy controls. These deficits remained stable over time in both patient groups. There were significant associations between social cognition, cognition and social functioning in all three groups. The study findings also provide some evidence that social cognition mediates the relationship between cognitive and social functioning. 3. (Alonso et al., 2009) 10 European countries longitudinal observational study 3 years n/a 9340 patients with schizophrenia To describe the evolution of health-related quality of life (HRQL) in patients with schizophrenia and to investigate the association between continuous antipsychotic use and HRQL.
Antipsychotic treatment over a 36month period was associated with substantial and sustained improvement in HRQL. The largest improvement occurred in the first six months. There were few differences in HRQL change between medication groups. Shorter duration of illness and earlier age at To assess the level of disability in patients with schizophrenia and to identify its clinical correlates and predictors.
Total disability scores were significantly decreased at follow-up. Disability was positively correlated with psychopathology and with medication side-effects. Patients with the disorganized subtype of schizophrenia and residual symptoms were more disabled than patients with other subtype diagnoses. Negative symptoms and duration of untreated psychosis were significant predictors of disability after 1 year. Early-onset schizophrenia had a twofold increased risk for developing disability. 5. (Álvarez et al., 2006) Spain randomized controlled trial 1 year olanzapine vs. risperidone

patients with schizophrenia
To evaluate the efficacy of olanzapine compared with risperidone in negative symptoms in schizophrenic outpatients with prominent negative symptoms.
Both agents significantly improved psychopathology. However, olanzapine patients showed higher improvement than risperidone patients on the Scale for the Assessment of Negative Symptoms (SANS) summary score and on the affective flattening and avolition/apathy SANS subscales. There were also significant improvements in favor of olanzapine in positive symptoms and social functioning. Olanzapine patients reported less extrapyramidal side effects but a higher incidence of body weight increase. 6. (Arango et al., 2006)  To compare the physical and mental health parameters of patients with schizophrenia participating in a structured 16-week treadmill walking program with those of a control group from the same population not participating in the exercise program during the same time period.
Participants in the walking group experienced significant reductions in body fat compared to a control group. Experimental participants also had greater aerobic fitness, lower BMI, and fewer psychiatric symptoms than controls at the conclusion of the program, but these differences did not reach statistical significance.
9. (Bejerholm & Eklund, 2006) Sweden qualitative study n/a n/a 20 patients with schizophrenia To provide insight into how people with schizophrenia engage in daily occupations, interact with their environment, and endeavour to make sense of their experiences.
Participants showed considerable variation in the levels of engagement in daily occupations. Each level of occupational engagement was related to a daily rhythm and a sense of meaning. Levels of engagement ranged from performing mostly quiet activities, alone, with little sense of meaning, to engaging in meaningful occupations that involved social interactions. In general, female participants preferred activities in their home environment, while males preferred activities outside their home environment.

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Country Study design Follow-up Intervention Participants Aims Main findings 10. (Bitter et al., 2005) 27 countries longitudinal observational study 6 months n/a 570 patients with schizophrenia (1) To examine sexual functioning among firsttime treated schizophrenia patients at the time that they initiated antipsychotic treatment, and again 3 and 6 months later.
(2) To compare the impact of olanzapine, risperidone and typical antipsychotics on sexual functioning.
Before starting antipsychotic treatment, 20.2% of the patients reported being unable to perform sexually, 16.8% reported some problems in sexual functioning and 62.9% reported no problems. After being treated, patients receiving olanzapine showed the lowest prevalence of neuroleptic-related loss of libido and sexual dysfunction. The experimental group members improved their perception and interpretation of social situations, but not their emotion recognition. An improvement was also observed in the areas of personal care and daily activities. The intervention did not produce any significant change in attention or psychopathology. 27. (González-Torres et al., 2007) Spain qualitative study n/a n/a 18 patients with schizophrenia, 26 relatives To explore actual stigma and discrimination experience recalled by people with schizophrenia and their relatives, and reflect on the consequences of those experiences on The following categories of stigma and discrimination experiences were extracted from the patients' data: (1) Mental illness vs. Lack of will, (2) Prejudice related to dangerousness, (3) Over-protection -Infantilization, There were no significant differences in quality of life between adherence therapy and health education groups at baseline or at follow-up. There was also no significant difference in medication adherence between the two groups at follow-up. Finally, the experimental and control groups did not differ significantly at baseline or at follow-up in terms of psychopathology. Patients with schizophrenia, compared with controls, were impaired on facial emotion processing tasks, one that required identification of happy and sad emotions and another that required differentiating among intensities within these emotions. They responded inaccurately yet faster than controls for the intensity differentiation task, suggesting a decomposition of the normal relation between accuracy and speed. Flat affect was more common in men and was associated with poorer premorbid adjustment, worse current quality of life, and worse outcome at (1) To evaluate emotion perception in acutely ill patients experiencing a first episode of schizophrenia.

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(2) To investigate the effects of antipsychotic medication on emotion perception.
At the baseline assessment, patients with schizophrenia performed more poorly than healthy controls on both the emotion acuity task and the emotion differentiation task. There was a robust decrease in symptom scores in the patient group from baseline to followup. However, clinical improvement was unrelated to change in emotion task performance. There was no significant improvement on any of the emotional processing tasks after treatment. Emotion perception deficits were correlated with negative symptoms after clinical stabilization. 35. (Hill et al., 2010) Australia qualitative study n/a n/a 7 patients with schizophrenia To investigate the process of transition to independent accommodation for people with schizophrenia.
The analysis of the data revealed that the transition to independent accommodation involved three processes which did not occur in a linear or sequential progression but rather developed simultaneously: (1) developing a sense of control, (2) establishing a relationship between illness and place, and (3) attaining a sense of belonging.  1986, 1990, and 1994) To investigate the competitive employment rate and predictors of competitive employment in a large and unselected nationwide sample of discharged schizophrenia patients during an era of rapid deinstitutionalization in Finland.

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Altogether, an average of 12.0% of the study population was either competitively or non-competitively employed 3 years after discharge. At follow-up, the competitive employment rate declined among the three cohorts, whereas the rate of non-competitive employment remained at the same level. The probability of competitive employment was higher for those who, at the time of discharge, were not on disability pension and had a current or past history of marriage, and had been discharged in the late 1980s.  (16%), and a cluster with distinct initial improvement and then stable high subjective wellbeing (20%). These clusters were highly concordant with 3year patterns of symptoms, quality of life, and, in part, psychosocial functioning. Stable low cluster affiliation was mainly predicted by a low Subjective Well-being under Neuroleptic Treatment scale (SWN-K) total score at baseline, initial treatment with conventional antipsychotics, and further by medication non-adherence as well as not being in early symptomatic and functional recovery at 3 months. Stable moderate cluster affiliation was predicted by being employed, a higher SWN-K total score at baseline, and further by non-adherence with medication. Early improvement cluster affiliation was mainly predicted by a good functional level at baseline, initial treatment with atypical antipsychotics and further by symptomatic recovery at 3 months. To examine the contribution of low insight to the prediction of aggressive behavior among a high-risk sample of individuals with schizophrenia.
The prevalence of physically aggressive behavior in the examined sample was rather low. Lack of insight was associated with aggressive behavior in univariate analyses, but did nor contribute to the prediction of aggressive behavior, once scores for psychopathy and positive symptoms were entered into the model. Aggressive behavior was more strongly associated with high scores for psychopathy traits and positive symptoms than with lack of insight. 54. (Liu et al., 2007) Canada qualitative study n/a n/a 7 patients with schizophrenia (1) To explore participants' experiences of a supportedemployment program.
(2) To gain insights into what processes and outcomes are meaningful and important for participants and may enable an evaluation of such A tentative grounded theory was developed to with three themes of supported-employment program outcomes: (1) removing barriers to job seeking, (2) improving psychological well-being, and (3) participating in work. The program removed barriers to job seeking by (a) supporting effective

Study design Follow-up Intervention Participants Aims
Main findings processes and outcomes for their congruence with occupational therapy practice.
job seeking, (b) improving workrelated skills and knowledge, and (c) encouraging a partnership between case managers and participants. Two distinct phenomena related to sustained positive changes in participants' psychological well-being were identified: (a) becoming reassured and (b) achieving a better self-image. Participating in work was not perceived as a direct consequence of supported-employment outputs; rather it was a product of combining one outcome theme (removing barriers to job seeking) and two intervening conditions (participant's amount of effort in job seeking and readiness for job seeking To measure the impact of giving free fruit and vegetables for 6 months on eating habits in schizophrenia. The diet of participants improved when they were given free fruit and vegetables but this was not sustained after withdrawal of the intervention. A support program added no benefit. There was no between-group difference at any time point in measures of change from baseline in psychopathological symptoms, blood indices of nutrition, for those assigned to perphenazine and risperidone, to a high of slightly over 30% for those on ziprasidone and perphenazine at 18 months. There was a moderate but significant relationship between employment status and participation in PSR, suggesting that participation in PSR is associated weakly but significantly with current employment. There were no differences between medication groups on employment outcomes or participation in PSR. 67. (Rice, 2008) USA qualitative study n/a n/a 9 women with schizophrenia, 11 case managers (1) To examine violence perpetrated against women diagnosed with schizophrenia.
(2) To understand how this population of women has become "invisible" and an acceptable victim of violence.
(3) To critically examine the perspectives of women who experience violence and case managers who care for them.
Stigma was an overarching theme in the stories of women and case managers. Women believed they were acceptable victims of violence. They knew that the coexistence of violence and schizophrenia contributed to their stories of violence being doubted or disbelieved. Providers substantiated women's understanding that no one would listen to their stories. Women also believed that schizophrenia was the "lowest" on a hierarchy of mental illnesses and providers substantiated this belief. Providers and consumers accepted violence among women as "the way things are." Neither group expressed hope for possibilities of change that violence could be overcome. Although providers were aware that stigma existed for women, they perceived that stigma was found elsewhere, not within their own relationships with women. 68. (Riedel et al., 2005) Germany randomized controlled trial 12 weeks quetiapine vs. risperidone

patients with schizophrenia
To compare the efficacy and safety of risperidone and Both antipsychotics produced significant decreases in overall,

Country Study design Follow-up Intervention Participants Aims
Main findings quetiapine in patients with schizophrenia presenting with predominantly negative symptoms.
positive and negative symptoms. Quetiapine and risperidone proved to be similarly efficacious in all clinical measures over the 12-week period, with no significant difference in PANSS total scores, PANSS positive and negative subscores, CGI scores and SANS scores. The tolerability profile of quetiapine was advantageous compared with risperidone. 69. (Ritchie et al., 2006) Australia randomized controlled trial 6 months olanzapine vs. risperidone

patients with schizophrenia
To determine whether either olanzapine or risperidone was superior in terms of efficacy or side effects when treating schizophrenia in late life.
Parkinsonism, positive and negative symptoms of schizophrenia improved in both groups both from baseline switch to olanzapine or risperidone and during the six-month follow-up. There was no difference at six-month followup between the groups with regard to depressive symptoms, though the olanzapine group exhibited a significant decline in depressive symptoms from baseline to the end of the six-month comparison. To test the hypothesis that a positive family history of schizophrenia and related psychoses is associated with a higher level of emotional distress in schizophrenia subjects.
There were 79 patients with a negative family history and 69 patients with a positive family history. No betweengroup differences were found in psychopathological symptoms and side effects of medication. Both groups had similar levels of emotional distress at baseline. Patients with a negative family history reported improvements in distress and depression severity after 16 months, while those with a positive family history experienced persistent elevated emotional distress, mainly, on obsessiveness, and depression subscales. Both groups of patients were characterized by elevated emotional distress at follow-up examination compared to healthy subjects. 73. (Russell et al., 2006) England, Australia pilot intervention study Main findings for the treatment of mental disorders among long-stay patients after their discharge from a mental hospital and to assess the patients' social and clinical outcomes over 2-year post-discharge period. experienced any interruptions from major exacerbations of their mental disorders or physical illness. Four (5.1%) patients had major psychotic or affective exacerbations and were readmitted to psychiatric wards. Twelve (15.4%) people were admitted to hospital because of serious physical illnesses. One resident committed suicide. Those who remained in the community facility for 2 years demonstrated significant improvements in the areas of psychiatric symptoms, global functioning, social activity, speech functions, self-care, general behavior, withdrawal, independence (performance), independence (competence), and employment. Unexpectedly, a deterioration on the measure of insight was observed. 75. (Salokangas et al., 2007) Finland longitudinal retrospective study 3 years n/a 2502 patients with schizophrenia (three samples of patients, who were discharged from psychiatric hospitals in 1986, 1990, and 1994) To study social role behavior (SRB) among patients with long-term schizophrenia living in the community during sharp decline in number of psychiatric beds.
About 85% of all patients had considerable problems in at least one of the measured areas of behavior, while one third had problems in five or more areas of behavior. The most problematic areas were work, initiative, close relationships, social withdrawal, social relationships and managing money. In the majority of SRB areas, men managed more poorly than women. Later discharge years were associated with poor SRB at follow-up. Being married and having good psychosocial functioning and ability to work, as well as having paranoid type of schizophrenia related to fewer problems in SRB at follow-up.  1986, 1990, and 1994) To explore the levels of life satisfaction among patients with long-term schizophrenia who were discharged from hospitals into the community and the factors associated with their satisfaction.
Patients discharged in 1994 were more satisfied than those discharged earlier.
Patients tended to report more satisfaction at follow-up if they were female, had good psychosocial functioning, had several confidants, or were living in group homes or dormitories. Patients tended to be less satisfied at follow-up if they were divorced or had mental and physical symptoms. Patients with depressive symptoms or with low psychosocial functioning and those who were currently hospitalized reported the smallest changes in levels of satisfaction between the two time points. Patients with low psychosocial functioning who were living with their parents, in group homes or dormitories, or in institutions were relatively satisfied, whereas patients with good psychosocial functioning were more satisfied if they lived with their spouse or partner. 77. (Sánchez et al., 2009)  There was a statistically significant improvement in task skills, interpersonal skills, and roles among participants involved in the experimental group (RDP). Qualitative findings supported the quantitative findings. Participants from both groups indicated that the rehabilitation program was a positive aspect of their hospitalization. However, for the comparison group this was primarily a productive use of time while the participants in the experimental group could cite specific skills and roles they learned through participation in the program. Also, only the participants in the experimental group could verbally identify long-term benefits and specific ways in which their roles and skills could transfer to other life situations. 79. (Schomerus et al., 2007) UK, France, Germany longitudinal observational study 2 years n/a 1208 patients with schizophrenia To determine the effect of rural or urban residence on frequency of social and family contacts.
Family visits, social visits and planned social activities were less common in urban compared to rural settings, whereas no significant differences were found for social and family telephone calls and time spent with a spouse. Women talked more frequently on the phone, both to friends and to family. Patients living with a partner had more contacts to family, but less social visits To examine the effects of social skills training on the social skills and self-esteem of inpatients with chronic schizophrenia.
The conversational, interpersonal relationship, and assertiveness skills, and self-esteem of the experimental group showed significant improvement, whereas problem-solving skills did not improve. To compare the efficacy, safety and tolerability of the atypical antipsychotics quetiapine and olanzapine in treating the negative symptoms of schizophrenia.

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Quetiapine and olanzapine were similarly effective: in each treatment group significant improvements at week 12 were observed for negative symptom scores on the SANS and the PANSS, and for subscale scores of affective flattening and alogia on the SANS. It was also shown that these two atypical antipsychotics produced a beneficial effect on other symptom domains, as assessed by the PANSS total and subscale scores. There were no significant differences in PANSS total and subscale scores between the two treatment groups at any assessment throughout the 12-week study. convictions, 94 were for violent crimes (physical aggression against other people), which were committed by 62 patients (3.73%). Five cases of manslaughter or murder were recorded (committed by 3 patients). Male gender was a substantial risk factor for nonviolent and violent behavior. Significantly higher rates of criminal conviction and recidivism were found for patients with lack of insight at discharge. Analyses also showed a significantly higher risk of non-violent and violent crimes in patients with a hostility syndrome at admission and discharge. There was a significantly lower incidence of criminal behavior in subjects with a depressive syndrome. 86. (Srinivasa et al., 2005) India longitudinal observational study 18 months n/a 100 patients with schizophrenia To examine the costs associated with a community outreach program targeted at meeting the needs of people with schizophrenia living in rural India, and to assess its impact on the personal functioning of individuals with the disease itself as well as the associated burden on families.
Outreach management of persons with previously untreated schizophrenia resulted in significant reductions in positive and negative symptoms (by 58% and 43% respectively). A score for general psychopathology revealed less improvement. Symptomatic improvement was accompanied by considerable and sustained reductions in levels of disability (a 70% change on the WHODAS II summary score) and family burden (80%). The major improvements on these outcome measures were observed within the first 9 months. Increases in treatment and community outreach costs over the follow-up period were accompanied by reductions in the costs of informal-care sector visits and family care-giving time. To examine task-, emotion-, and avoidance-oriented coping strategies in schizophrenia and explore associated clinical factors at exacerbation and stabilization phases of the illness.

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Significant improvements over time were noted in psychopathological symptoms, emotional distress, insight, self-esteem, self-efficacy, perceived social support and quality of life. Patients tended to use more emotional coping strategies at exacerbation than at stabilization phase, whereas the taskand avoidance-oriented coping strategies remained unchanged in magnitude during the follow-up period. Regression analysis demonstrated emotional distress to be the strongest predictor of emotion-oriented coping, with self-efficacy and social support being the best predictors of task and avoidance coping strategies, respectively. Individual changes in these variables also appeared to be important predictors for fluctuations of these coping strategies over time. composite neurocognitive score (CNCS), verbal memory and motor speed. The CNCS was the strongest predictor of good or low occupational adaptation group membership at follow-up. Symptoms appeared to explain less of the variance in functioning. Severity of general psychopathology was the only clinical significant predictor of subsequent functional outcome, and the depressive variable was the only clinical predictor of low occupational adaptation group membership. The variable that best predicted disability one year later was vocabulary domain. In bipolar I patients, changes in the CNCS over one year, deficits in the visual/motor processing domain, severity of symptoms and premorbid adjustment at the first assessment were the variables that better predicted functioning or disability changes over time. Statistically significant improvements were obtained in the CBT condition for the CGI-Improvement, Global Assessment Scale (GAS), and Global Psychosocial Functioning. CBT patients achieved a statistically significant decline in overall symptom severity, and in delusions. A trend toward reductions in negative symptoms was also achieved. Moderate to large effect sizes were achieved for overall life satisfaction, work functioning, and levels of global impairment, as well as for the CGI-Improvement, GAS, and Global To examine the course of disability over a period of 1 year in three groups of community-dwelling schizophrenia patients: those who were already receiving antipsychotic treatment and continued to receive it, those who were not on treatment but started receiving antipsychotic medication during follow-up and those who were not on treatment and remained untreated.
Participants who were not receiving antipsychotics at baseline had significantly greater disability than those who were receiving antipsychotics. Those who continued to receive antipsychotics and those who started receiving them had a significant reduction in disability; this was apparent across all the four domains of disability (self-care, interpersonal relationships, communication and understanding, work) as well as in total disability. Disability remained virtually unchanged in those who remained untreated. Similar findings were observed for psychopathology scores. Across all the three groups, disability correlated highly with severity of psychopathology. Among the domains of psychopathology, the correlations were the strongest between the negative syndrome score and the total disability score. 92. (Usall et al., 2007) 10 European countries longitudinal observational study 6 months n/a 7990 patients with schizophrenia To evaluate gender differences in schizophrenia in response to typical and atypical antipsychotics.
Women showed significantly greater improvement in overall clinical severity and quality of life compared with men. The analysis of the differences in response to treatment in positive, negative, depressive and cognitive symptoms has revealed that women respond better than men in all the different symptom dimensions. The highest gender differences were found in typical antipsychotics and clozapine. To evaluate the effects of computer-assisted cognitive strategy training (CAST) and training of selfmanagement skills for negative symptoms (TSSN) as adjuncts to vocational rehabilitation.
CAST appeared superior to VRA in measures of attention and verbal memory, and TSSN did not, pointing to a specific effect of the cognitive training. No significant difference was found for TSSN in improvements of negative symptoms. The rate of successful job placement in the 12month follow-up was significantly higher for CAST than for VRA; neither TSSN and VRA nor CAST and TSSN differed significantly. CAST was 2.3 times as effective as VRA in returning people to work in the year following