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      Measuring quality of life in mental health: Are we asking the right questions?

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          Abstract

          Measuring quality-adjusted-life years using generic preference-based quality of life measures is common practice when evaluating health interventions. However, there are concerns that measures in common use, such as the EQ-5D and SF-6D, focus overly on physical health and therefore may not be appropriate for measuring quality of life for people with mental health problems. The aim of this research was to identify the domains of quality of life that are important to people with mental health problems in order to assess the content validity of these generic measures. Qualitative semi-structured interviews were conducted with 19 people, recruited from UK mental health services, with a broad range of mental health problems at varying levels of severity. This complemented a previous systematic review and thematic synthesis of qualitative studies on the same topic. Seven domains important to quality of life for people with mental health problems were identified: well-being and ill-being; relationships and a sense of belonging; activity; self-perception; autonomy, hope and hopelessness; and physical health. These were consistent with the systematic review, with the addition of physical health as a domain, and revealed a differing emphasis on the positive and negative aspects of quality of life according to the severity of the mental health problems. We conclude that the content of existing generic preference-based measures of health do not cover this domain space well. Additionally, because people may experience substantial improvements in their quality of life without registering on the positive end of a quality of life scale, it is important that the full spectrum of negative through to positive aspects of each domain are included in any quality of life measure.

          Highlights

          • Seven domains important to quality of life were identified.

          • Generic preference based QoL measures do not cover the life domains important in mental health.

          • Depression has the greatest impact on quality of life.

          • Measures should consider both what adds and takes away quality of life.

          • There is a large overlap between the concept of quality of life and that of ‘personal recovery’.

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          Most cited references22

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          The estimation of a preference-based measure of health from the SF-36.

          This paper reports on the findings of a study to derive a preference-based measure of health from the SF-36 for use in economic evaluation. The SF-36 was revised into a six-dimensional health state classification called the SF-6D. A sample of 249 states defined by the SF-6D have been valued by a representative sample of 611 members of the UK general population, using standard gamble. Models are estimated for predicting health state valuations for all 18,000 states defined by the SF-6D. The econometric modelling had to cope with the hierarchical nature of the data and its skewed distribution. The recommended models have produced significant coefficients for levels of the SF-6D, which are robust across model specification. However, there are concerns with some inconsistent estimates and over prediction of the value of the poorest health states. These problems must be weighed against the rich descriptive ability of the SF-6D, and the potential application of these models to existing and future SF-36 data set.
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            Integrating response shift into health-related quality of life research: a theoretical model.

            Patients confronted with a life-threatening or chronic disease are faced with the necessity to accommodate to their illness. An important mediator of this adaptation process is 'response shift' which involves changing internal standards, values and the conceptualization of quality of life (QOL). Integrating response shift into QOL research would allow a better understanding of how QOL is affected by changes in health status and would direct the development of reliable and valid measures for assessing changes in QOL. A theoretical model is proposed to clarify and predict changes in QOL as a result of the interaction of: (a) a catalyst, referring to changes in the respondent's health status; (b) antecedents, pertaining to stable or dispositional characteristics of the individual (e.g. personality); (c) mechanisms, encompassing behavioral, cognitive, or affective processes to accommodate the changes in health status (e.g. initiating social comparisons, reordering goals); and (d) response shift, defined as changes in the meaning of one's self-evaluation of QOL resulting from changes in internal standards, values, or conceptualization. A dynamic feedback loop aimed at maintaining or improving the perception of QOL is also postulated. This model is illustrated and the underlying assumptions are discussed. Future research directions are outlined that may further the investigation of response shift, by testing specific hypotheses and predictions about the QOL domains and the clinical and psychosocial conditions that would potentiate or prevent response shift effects.
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              Psychiatric symptoms and quality of life in schizophrenia: a meta-analysis.

              Quality of life (QoL) has been recognized as an important outcome of schizophrenia treatment, yet the determinants of QoL for individuals with schizophrenia are not well known. Research has consistently found psychiatric symptoms to be negatively related to QoL, however, findings concerning the strength of these relationships have been mixed, making it difficult to determine the degree to which such symptoms are related to poor QoL. This research presents a systematic meta-analysis of studies examining the relationship between psychiatric symptoms and QoL in schizophrenia, in an effort to elucidate the determinants of QoL for this population. A total of 56 studies were extracted from literature searches of relevant databases for empirical reports published between 1966 and 2005 examining the relationship between positive, negative, and/or general psychiatric symptoms and QoL. Weighted effect size analyses revealed small relationships between psychiatric symptoms and QoL, with general psychopathology showing the strongest negative associations across all QoL indicators. Moderator analyses indicated that variation in effect sizes could be accounted for by differing operationalizations of QoL, study design, sample, and participant treatment setting. In particular, positive and negative symptoms were more strongly related to poor QoL among studies of schizophrenia outpatients, whereas general psychopathology showed a consistent negative relationship with QoL across all study samples and treatment settings. Implications for future research and treatment development are discussed.
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                Author and article information

                Contributors
                Journal
                Soc Sci Med
                Soc Sci Med
                Social Science & Medicine (1982)
                Pergamon
                0277-9536
                1873-5347
                1 November 2014
                November 2014
                : 120
                : 12-20
                Affiliations
                [a ]Health Services Research, School of Health and Related Research, University of Sheffield, Sheffield, UK
                [b ]Health Economics, School of Health and Related Research, University of Sheffield, Sheffield, UK
                Author notes
                []Corresponding author. j.connell@ 123456sheffield.ac.uk
                Article
                S0277-9536(14)00543-7
                10.1016/j.socscimed.2014.08.026
                4224500
                25194472
                ae690001-9368-4eb2-8a17-4a9ab7b547ad
                © 2014 The Authors
                History
                : 16 December 2013
                : 1 August 2014
                : 19 August 2014
                Categories
                Article

                Health & Social care
                uk,quality of life,mental health,preference based measures,eq-5d,sf-6d,well-being,recovery

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