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      Measuring the Quality of Life in Patients with Multiple Sclerosis in Clinical Practice: A Necessary Challenge

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          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          While the physical disability aspect of multiple sclerosis (MS) is of great importance, quality of life (QoL) measurements are being considered increasingly important with regard to evaluating disease progression, treatment, and the management of care provided to MS patients. Despite the acknowledged need to consider QoL issues, QoL assessment remains underutilized in clinical practice. These issues should be explored and understood to promote the use of measuring QoL in MS clinical practice. We explore the difficulties for clinicians: choosing and determining the most appropriate QoL measure and how to best integrate QoL measurements into clinical practice. This paper discusses several avenues to provide to clinicians arguments of the clinical relevance and accuracy of QoL instruments and ultimately to enhance the use of QoL measures in clinical practice for MS patients.

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          Integrating response shift into health-related quality of life research: a theoretical model.

          M A G Sprangers, C E Schwartz (1999)
          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.
          Article 0 comments Cited 365 times – based on 0 reviews     Review now
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            Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research.

            M Sprangers, Peter J. Schwartz (1999)
            The impact of health state changes on an individual's quality of life (QOL) has gained increased attention in social and medical clinical research. An emerging construct of relevance to this line of investigation is response shift phenomenon. This construct refers to the changes in internal standards, in values, or in the conceptualization of QOL which are catalyzed by health state changes. In an effort to stimulate research on response shift, we present methodological considerations and promising assessment approaches for measuring it in observational and interventional clinical research. We describe and evaluate individualized methods, preference-based methods, successive comparison methods, design approaches, statistical approaches and qualitative approaches. The hierarchical structure of the construct is also discussed, with particular emphasis on how it might be elucidated by empirical assessment which uses the proposed methods and approaches. It is also recommended that criterion measures of change be included in future studies of response shift.
            Article 0 comments Cited 148 times – based on 0 reviews     Review now
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              The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory?

              Joanne Greenhalgh, Andrew F. Long, Rob Flynn (2005)
              This paper applies a theory-driven approach to explore why the use of patient-reported outcome (PRO) measures in clinical practice, in particular, health-related quality of life (HRQoL) instruments, has little or no apparent influence on clinical decision making. A theory-driven approach involves combining knowledge of whether and how an intervention works. It is argued that such an approach is currently lacking within the literature evaluating the effectiveness of feeding back HRQoL information to clinicians. The paper identifies a number of mechanisms that might give rise to the expected outcomes that are currently implicit within the design of the intervention and hypotheses specified within the trials evaluating the use of HRQoL measures in clinical practice. It then examines how far current clinical practice matches these mechanisms and in doing so, a number of possible explanations for the lack of impact of HRQoL on clinical decision making are reviewed. The influence of HRQoL information on clinical decision making depends on a large number of factors related to the design of the intervention, patients' and clinicians' desire to discuss HRQoL issues within the consultation and the legitimacy that clinicians give to HRQoL instruments. To date, knowledge of how the feedback of HRQoL information to clinicians might improve doctor-patient communication or clinical decision making has yet to sufficiently inform an assessment of whether these aspects of patient care are improved. The paper concludes by specifying how the feedback of HRQoL information to clinicians might be modified to maximise its impact on clinical decision making.
              Article 0 comments Cited 128 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (nlm-ta): Mult Scler Int
                Journal ID (iso-abbrev): Mult Scler Int
                Journal ID (publisher-id): MSI
                Title: Multiple Sclerosis International
                Publisher: Hindawi Publishing Corporation
                ISSN (Print): 2090-2654
                ISSN (Electronic): 2090-2662
                Publication date (Print): 2013
                Publication date (Electronic): 28 February 2013
                Volume: 2013
                Electronic Location Identifier: 524894
                Affiliations
                1EA3279, Self-Perceived Health Assessment Research Unit, School of Medicine, Aix-Marseille University, 27 Boulevard Jean Moulin, 13385 Marseille Cedex 05, France
                2Department of Neurology, Timone University Hospital, 27 Boulevard Jean Moulin, 13385 Marseille Cedex 05, France
                Author notes

                Academic Editor: Rob Bermel

                Article
                DOI: 10.1155/2013/524894
                PMC ID: 3603557
                PubMed ID: 23533758
                SO-VID: 57129587-657d-43dc-a8cf-6c17528ec2f9
                Copyright © Copyright © 2013 Karine Baumstarck et al.
                License:

                This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                Date received : 14 November 2012
                Date revision received : 7 January 2013
                Date accepted : 5 February 2013
                Categories
                Subject: Review Article

                ScienceOpen disciplines: Rheumatology
                Data availability:
                ScienceOpen disciplines: Rheumatology

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