The association between needs and quality of life in an epidemiologically representative sample of people with psychosis.

The impact of meeting needs on quality of life in the severely mentally ill is investigated in this study. An epidemiologically representative sample of 133 patients meeting ICD-10 criteria for psychosis completed standardized instruments for measuring needs and quality of life. Covariance structure modelling was used to investigate the extent to which latent factors of met and unmet need were associated with latent quality of life. Patients rated about 0.7 more total (met plus unmet) needs than staff, mainly due to differences in rating unmet need. Patient ratings were more reliable than ratings by others of unmet need and quality of life. Both underlying unmet need and met need were negatively associated with underlying quality of life, but unmet need was the stronger relationship. The patient's perspective on their difficulties (especially their unmet needs) must be central to mental health care.     

Development and Evaluation of a Patient-rated Version Of the Camberwell Assessment of Need Short Appraisal Schedule (CANSAS-P)

The comprehensive assessment of patients with severe mental health problems includes the evaluation of needs, as this informs service planning, and levels of unmet need have been found to be associated with lower subjective quality of life. The Camberwell Assessment of Need is the most widely used instrument for this purpose. We report the development and evaluation of a new, patient-rated, short form (CANSAS-P). The CANSAS-P exhibited comparable detection of needs with its predecessor, better identification of domains that are problematic for patients to respond to, good test-retest reliability, especially for unmet needs, and generally positive evaluations by patients. We recommend the CANSAS-P as the needs assessment measure of choice for completion by patients. Tom Trauer, Glen Tobias, and Mike Slade are affiliated with Department of Psychiatry, University of Melbourne, Australia.     

Assessing Population Need for Mental Health Care: A Review of Approaches and Predictors

This review aimed to clarify the concept of need, explore the different approaches used to assess need, and contribute to an improved understanding of predictor and intervening factors in assessing need for mental health services. Two population-based needs assessment approaches have been identified: modeling need for services and surveys of the general population. The most widely used model was that based on the Jarman-8 index of social deprivation. The population-based epidemiological surveys addressed perceived need by seeking direct, self-reported measures of individuals' perceptions of their needs for care. Although many studies have reported correlates of service use, few have attempted to identify correlates of perceived need. The fact that two-thirds to three-quarters of people were identified as meeting criteria for a mental health disorder, but did not report receiving treatment, highlighted a gap between epidemiology and service use. This gap could be explained by a number of intervening factors such as the discordance between diagnosis and disability, the determinants of and barriers to help-seeking behavior, the belief systems concerning appropriate treatments, and choice of health professionals. This review has thus identified the predictor variables which are important for a comprehensive analysis of need for mental health care. Suggestions and challenges have been put forward to address the identified gaps in assessing population need.     

A comparison of the quality of life of severely mentally ill people in UK & German samples

The improvement of the quality of life of people with a severe mental illness is a key policy objective and an important outcome for clinical services. Drawing on cases assessed using the Lancashire Quality of Life Profile and its German translation (The Berliner Lebensqualitatprofil), this paper explores the relationship between personal characteristics, objective well being, subjective well being and overall well being. These variables are compared in two large data sets of people with severe mental illness, one from the UK (n = 1279) and the other from Germany (n = 386). The comparison shows that UK cases have significantly lower subjective well-being in almost all life domains (except safety, living situation and employment). UK cases reported slightly but not significantly higher levels of satisfaction with employment but German cases are more often employed than their UK counterparts. The German samples reported substantially better subjective well-being ratings for health, finances, family, leisure and social life. Exploration of the predictors of overall well-being shows that in both countries depression has the effect of reducing subjective well-being scores, except in relation to work (both samples), religion (UK), finance and safety (Germany). Regression analysis confirms that age, depression and objective circumstances make a small contribution to overall well-being but that subjective ratings in individual life domains make the major contribution. The most important individual predictors of overall well-being for the two samples combined include being a victim of crime, depression and satisfaction with leisure, work, health and mental health, family, living situation, finance and social contacts. Factor analysis indicates that the variance in global well-being explained in both samples combined is 36% (31% in the German samples and 38% in the UK sample).     

Psychiatric Disorder and Unmet Service Needs Among Welfare Clients in a Representative Payee Program

This study assessed psychiatric problems, needs for psychiatric and social services, and service utilization among clients of a public assistance program. Sixty-five clients were assessed using a structured clinical interview to determine the presence of a psychiatric disorder (using the CIDI-A), extent of social service need, and health-related quality of life (RAND SF-36). Seventy-seven percent of the sample met criteria for at least one current or lifetime psychiatric disorder. Health-related quality of life was substantially below published norms. Most clients reported needing financial, housing, and vocational assistance. Many had contact with mental health services, but few were actually receiving psychiatric treatment. Although many clients were assessed as having serious psychiatric, physical, or social needs, very few were receiving appropriate services for these problems. Findings suggest problems or barriers to the provision of services that need to be investigated among this vulnerable community population.     

The routine assessment of severity amongst people with mental illness

Background: Specialist mental health services are required to prioritise their work. To help this process numerous definitions of severe mental illness have been suggested. Such definitions vary, and are not necessarily valid or reliable. This investigation examined whether there was agreement over who constituted the most severely ill patients, amongst the case load of a community mental health team (CMHT). Method: Suggested guidelines for the prioritisation of patients were adapted after consultation and pilot reliability studies, and were then used by CMHT staff to rate their case loads (n=299). Test re-test, and inter-rater reliability studies were then conducted. A random sub-sample (n=120) was selected for further analysis to measure concurrent validity with respect to assessment of need, functioning and quality of life; and criterion validity. Results: There was consistency in individual key worker decisions over time, and key worker ratings were valid in terms of disability, need and quality of life. Patients with a psychotic diagnosis were more likely to be rated as a high priority than those with a non-psychotic diagnosis. Agreement amongst different staff (inter-rater reliability) was poor, especially when ratings from CMHT staff were compared to external ratings. Conclusions: Our findings highlight the difficulties inherent in trying to agree on who constitute the severely mentally ill, and warn against the indiscriminate use of guidelines to determine access to services. Accepted: 30 January 2001     

What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life?

OBJECTIVE: The authors assessed the magnitude of discrepancy between patients' and caregivers' ratings of the patients' quality of life and sought to determine whether the discrepancies are associated with patient characteristics, caregiver characteristics, or the type of relationship between the patient and caregiver. METHODS: A sample of 91 patients with mild-to-moderately severe dementia and their primary family caregiver rated five domains of the patients' subjective quality of life. RESULTS: Agreement between patients and caregivers was low. Caregivers rated patients' quality of life lower than patients rated their own in all five domains. Discrepancies between patients' and caregivers' ratings were not associated with the patients' cognitive performance, level of functioning, nor caregivers' reports of aggressive, attention-seeking, or sexually inappropriate behaviors, nor whether the caregiver lived with or was married to the patient. However, discrepancies were associated with level of caregiver burden and the patients' report of depressive symptoms. Patients with depression reported low quality of life, which matched caregivers' low rating of patients' quality of life. Caregivers who reported higher levels of burden rated patients' quality of life lower than did patients in all five domains of quality of life. CONCLUSIONS: Discrepancies between dementia patients' and their caregivers' ratings of the patients' quality of life are associated with increased levels of caregiver burden, rather than lower levels of patients' functioning. The results of this study support the direct assessment of mild-to-moderate dementia patients about their subjective quality of life.     

Människosyn och terapi i psykiatrin

The aim of the study was to compare the subjective quality of life of persons with severe mental illness in inpatient settings and two types of supported housing, small congregate community residences and independent living with support. Seventy-six persons living in three types of housing were interviewed using the Lancashire Quality of Life Profile. Analysis showed no differences in subjective and objective quality of life or in clinical and socio-demographic data between individuals living in the two types of supported community residences. Greater satisfaction in four life domains, living situation, social relations, leisure activities and work and two global measures, was registered by individuals in the pooled ratings from the two types of supported community residences as compared to those in inpatient settings. The former were also more satisfied than their counterparts were in inpatient settings concerning specific aspects of the living situation domain. It is concluded that differences in housing settings impact specifically on the living situation life domain but also on other life domains as well as on global quality of life, despite few differences in objective quality of life indicators. There was no evidence to support the concept of the quality of life gradient across housing settings.     

Differences in quality of life domains and psychopathologic and psychosocial factors in psychiatric patients

BACKGROUND: Although treatment of severe mental disorders should strive to optimize quality of life (QOL) for the individual patient, little is known about variations in QOL domains and related psychopathologic and psychosocial factors in patients suffering from schizophrenia, schizoaffective disorder, and/or mood disorders. We hypothesized that QOL in severe mental disorder patients would have a more substantial relationship with psychosocial factors than with illness-associated factors. METHOD: A case-control, cross-sectional design was used to examine QOL of 210 inpatients who met DSM-IV criteria for a severe mental disorder and who were consecutively admitted to closed, open, and rehabilitation wards. Following psychiatric examination, 210 inpatients were assessed using standardized self-report measures of QOL, insight, medication side effects, psychological distress, self-esteem, self-efficacy, coping, expressed emotion, and social support. QOL ratings for patients and a matched control group (175 nonpatients) were compared. Regression and factor analyses were used to compare multidimensional variables between patients with schizophrenia and schizoaffective and mood disorders. RESULTS: In all QOL domains, patients were less satisfied than nonpatient controls. Patients with schizophrenia reported less satisfaction with social relationships and medication when compared with patients with schizoaffective and/or mood disorders. Regression analysis established differential clusters of predictors for each group of patients and for various domains of QOL. On the basis of the results of factor analysis, we propose a distress protection model to enhance life satisfaction for severe mental disorder patients. CONCLUSION: Psychosocial factors rather than psychopathologic symptoms affect subjective QOL of hospitalized patients with severe mental disorders. The findings enable better understanding of the combining effects of psychopathology and psychosocial factors on subjective life satisfaction and highlight targets for more effective intervention and rehabilitation.     

The quality of life of persons with severe mental illness across housing settings

The aim of the study was to compare the subjective quality of life of persons with severe mental illness in inpatient settings and two types of supported housing, small congregate community residences and independent living with support. Seventy-six persons living in three types of housing were interviewed using the Lancashire Quality of Life Profile. Analysis showed no differences in subjective and objective quality of life or in clinical and socio-demographic data between individuals living in the two types of supported community residences. Greater satisfaction in four life domains, living situation, social relations, leisure activities and work and two global measures, was registered by individuals in the pooled ratings from the two types of supported community residences as compared to those in inpatient settings. The former were also more satisfied than their counterparts were in inpatient settings concerning specific aspects of the living situation domain. It is concluded that differences in housing settings impact specifically on the living situation life domain but also on other life domains as well as on global quality of life, despite few differences in objective quality of life indicators. There was no evidence to support the concept of the quality of life gradient across housing settings.     

Low satisfaction with sex life among people with severe mental illness living in a community

Research on the sex lives of people with severe mental illness (SMI) most often focuses on dysfunction and the side-effects of medication. We wished to determine how people with SMI experience sex and assess satisfaction with it in a broader evaluation of quality of life. Data were gathered using mixed methods, including a reliable psychometric quality of life instrument, and in-depth interviews. Sex life showed the lowest rating of all quality of life domains, with men indicating lower satisfaction in this area than women. Low satisfaction also correlated with lower scores on the total quality of life index. Sexuality and intimate relations were generally experienced as out of reach or something of secondary importance that had to be controlled, according to many of those suffering from SMI. Programs such as patient disorder-specific or partner assisted interventions, to increase the possibility of sustaining a sex life might need to be added to existing recommendations for people with SMI living in a community.     

Relations between mindfulness and mental health outcomes: need fulfillment as a mediator

Links between mindfulness and mental health outcomes have been established, but the explanatory mechanisms responsible for these associations are far less understood. This study examined relationships between mindfulness, need fulfillment and mental health outcomes (negative affect and depressive symptoms). The primary purpose of this paper was to, first, verify the link between mindfulness and mental health outcomes, and second, to better understand and explain why mindfulness is important for mental health outcomes. Specifically, this study sought to examine the potential mediating influence of need fulfillment in the relationship between mindfulness and mental health outcomes. A sample of 399 university students and employees responded to an online survey. Data were collected on personal ratings of trait mindfulness, need fulfillment, negative affect and depressive symptoms. Results indicated a significant positive relationship between mindfulness and need fulfillment, and these variables were negatively associated with poor mental health outcomes (negative affect and depressive symptoms). Further, it was found that need fulfillment partially mediated the relationship between mindfulness and both mental health outcomes. Specific facets of need fulfillment (i.e., belongingness, self-esteem, control, meaningful existence) were also explored individually as potential mediators to determine which facet accounted for the greatest variance in the relationship between mindfulness and mental health outcomes. In doing so, this study helps clarify the relations between mindfulness and mental health outcomes. Results from this study extend the current literature of mindfulness and further inform the implementation of clinical mindfulness techniques and strategies.     

Comparison of key worker and patient assessment of needs in schizophrenic patients living in the community: a Nordic multicentre study

OBJECTIVE: The present study is part of a Nordic multicentre study investigating the life and care situation of community samples of schizophrenic patients. The specific aim of the present part of the study was to examine the agreement between patients and their key worker concerning the presence of met and unmet needs in a number of life domains, and help or support given in these domains. METHOD: The comparisons were based on 300 matched pairs of assessments of need using the Camberwell Assessment of Need interview. RESULTS: The results showed that key workers identified slightly more needs, 6.17 vs. 5.76, a significant difference. There was a moderate or better agreement on the presence of a need in 17 of 22 life domains investigated, but in only 11 life domains concerning the presence of an unmet need. Disagreement concerning whether the patient was given the right kind of help or support was even more substantial. CONCLUSION: It is concluded that key workers and patients disagree particularly concerning unmet needs and that this is potentially related to a number of factors associated with the key worker and patient. It is also concluded that further research is needed to increase the knowledge concerning the sources of this disagreement if need assessment is to become a valid basis for service planning and individual treatment planning.     

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

ABSTRACT

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).

Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.

Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.

Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.     

Individual unmet needs for care: are they sensitive as outcome criterion for the effectiveness of mental health services interventions?

Background  Mental health interventions should demonstrate an effect on patients’ functioning as well as his/her needs, in particular on unmet needs whose assessment depends on the perspective of either the patient or the clinician. However, individual met and unmet needs appear to change over time, qualitatively and quantitatively, raising questions about their sensitivity to change and about the association between level of needs and treatment. Methods  Data on baseline and follow-up need assessment in community mental health services in four European countries in the context of a cluster randomised trial on a novel mental health service intervention were used, which involved 102 clinicians with key worker roles and 320 patients with schizophrenia or related psychotic disorders. Need assessment was performed with the Camberwell assessment of needs short appraisal schedule (CANSAS) among patients as well as clinicians. Focus is the sensitivity to change in unmet needs over time as well as the concordance between patient and clinician ratings and their relationship with treatment condition. Results  At follow-up 294 patients (92%) had a full need assessment, while clinician rated needs were available for 302 patients (94%). Generally, the total number of met needs remained quite stable, but unmet needs decreased significantly over time, according to patients as well as to clinicians. Sensitivity to change of unmet needs is quite high: about two third of all unmet needs made a transition to no or met need, and more than half of all unmet needs at follow-up were new. Agreement between patient and clinician on unmet needs at baseline as well as follow-up was rather low, without any indication of a specific treatment effect. Conclusions  Individual unmet needs appear to be quite sensitive to change over time but as yet less suitable as outcome criterion of treatment or specific interventions.     

Supporting parents of youths with intellectual disabilities and psychopathology

Background Parents of children and adolescents with both intellectual disabilities (ID) and psychopathology often experience high levels of parenting stress. To support these parents, information is required regarding the types of support they need and whether their needs are met. Method In a sample of 745 youths (aged 10–24 years) with moderate to borderline ID, 289 parents perceived emotional and/or behavioural problems in their child. They were asked about their needs for support and whether these needs were met. Logistic regression analysis revealed the variables associated with both needing and receiving specific types of support. In addition, we asked those parents who had refrained from seeking support about their reasons. Results Most parents (88.2%) needed some supports, especially a friendly ear, respite care, child mental health care and information. Parents who perceived both emotional and behavioural problems in their child needed support the most. In addition, parents whose child had any of these problems before the past year, who worried most about their child and suffered from psychopathology themselves, more often needed support. Parents of children with moderate ID or physical problems especially needed ‘relief care’, that is, respite care, activities for the child and practical/material help. The need for a friendly ear was met most often (75.3%), whereas the need for parental counselling was met least often (35.5%). Not receiving support despite having a need for it was primarily related to the level of need. Parents who indicated to have a stronger need for support received support more often than parents who had a relatively low need for support. The parents’ main reasons for not seeking support concerned their evaluation of their child’s problems (not so serious or temporary), not knowing where to find support or wanting to solve the problems themselves first. Conclusions Most parents had various support needs that were frequently unmet. Service providers should especially aim at providing information, activities, child mental health care and parental counselling. Furthermore, parents need to be informed about where and how they can obtain what kind of support. A case manager can be of help in this.     

Needs of Adolescents and Young Adults with Neurodevelopmental Disorders: Comparisons of Young People and Parent Perspectives

This study used the Camberwell Assessment of Need for adults with Developmental and Intellectual Disabilities (CANDID) to examine the social, physical health and mental health needs of 168 young people (aged 14–24 years) with neurodevelopmental disorders and compared young person and parent ratings of need. Agreement was poor in 21 out of 25 domains. Parents consistently reported higher levels of need than young people in the majority of domains although young people with ADHD reported significantly more needs in physical health, eyesight/hearing, seizures, other mental health problems and safety of others than their parents. Both parent and young person perspectives of needs are necessary to ensure that needs that are predictive of current or future poor outcomes are not missed.     

Correlates of religious service attendance and contact with religious leaders among persons with co-occurring serious mental illness and type 2 diabetes

The purpose of this study was to examine the prevalence and correlates of religious participation among persons with co-occurring serious mental illness and type 2 diabetes. Among 201 outpatients, 53% attended religious services, 36% had regular contact with a religious leader, and 15% received assistance from a religious leader. Persons with schizophrenia and African Americans were more likely to attend services and have contact with religious leaders. Both attendance at religious services and regular contact with a religious leader were linked to higher quality of life in selected domains, but not associated with global health ratings or glycosylated hemoglobin (HbA1c) levels. Results indicate that there are important diagnostic and racial differences in religious participation, and that religious participation may be a resilience factor that supports enhanced quality of life for persons with serious mental illness and diabetes.     

The Italian multicenter observational study on post–stroke depression (DESTRO)

Despite growing information, questions still surround various aspects of post–stroke depression (PSD). The Italian multicenter observational study Destro was designed to help clarify in a large sample the frequency and clinical impact of PSD. A total of 53 centers consecutively admitted 1064 patients with ischemic or hemorrhagic stroke, assessing them periodically in the first 9 months after the event. Patients with depression were followed for two years. Depression was diagnosed on clinical examination, verbal (Beck Depression Inventory) and non–verbal rating systems (Visual Analog Mood Scale), identifying the nosographic condition attributable to the mental state. The patient’s clinical history, residual independence, and post–ictus quality of life were also taken into account. PSD was detected in 383 patients (36 %), most of whom had minor depression (80.17 %), with dysthymia, rather than major depression and adaptation disorder. About 80% developed depression within three months of the stroke. Cases with later onset tended to have less severe symptoms. Risk factors were a history of depression, severe disability, previous stroke and female sex, but not the type and site of the vascular lesion. PSD was not correlated with any increase in mortality or cerebrovascular recurrences, but these patients had lower autonomy and quality of life ratings. In conclusion, patients should be close observed in the first few weeks after a stroke in order to check for depression,which is more likely in those with clear risk factors and may spoil their quality of life.     

Determinants of quality of life in people with severe mental illness

OBJECTIVE: The objective of this article was to review some methodological issues in this field and give an overview of empirical research findings with a special focus on factors associated with or affecting subjective quality of life in people with a severe mental illness. METHOD: A selective review of relevant scientific literature on quality of life in severe mental illness was conducted. RESULTS: Subjective quality of life in people with a severe mental illness is only to a lesser extent related to external life conditions. Major determinants are psychopathology, especially symptoms of depression and anxiety, and aspects of the social network. Personality related factors such as self-esteem are also influential. Comparative studies have further shown that patients in community care settings have a better subjective quality of life than patients in hospital settings. CONCLUSION: Efforts to improve subjective quality of life in people with severe mental illness should include a careful monitoring of depressive and anxiety symptoms, and pay particular attention to assessment of and interventions against unmet needs. Further, such interventions should stress a strengthening of the social support of the clients. It is also important to pay attention to mediators of changes in subjective quality of life such as self-esteem, mastery, autonomy, and self-efficacy.