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      Individual quality of life in patients with multiple myeloma

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          Abstract

          Objective

          The situation of patients with multiple myeloma, whose treatment often implies high-dose chemotherapy and stem cell transplantation that can be associated with severe symptoms and psychological distress, has gained attention in recent psychooncological research. This study followed an idiographic approach in order to identify the areas of life most relevant for the interviewed myeloma patients’ quality of life (QoL) as well as their current satisfaction with these.

          Methods

          64 patients took part in semi-structured interviews according to the SEIQoL-DW Manual (Schedule for the Evaluation of Individual Quality of Life – Direct Weighting). Visual analogue scales (VAS) were used to gain additional information about a general assessment of the present QoL. Qualitative data evaluation preceded quantitative processing. Groups were compared according to the time elapsed since diagnosis regarding specified areas of life, satisfaction with these and their relative weighting. SEIQoL-DW-indices were correlated to the VAS to reflect on an interindividually comparable parameter.

          Results

          Personal social relationships were mentioned significantly more often as important for QoL than health-related aspects, and in direct comparison were weighted significantly stronger. Regarding the change of areas relevant for QoL over the time elapsed since diagnosis, there was a significant difference between groups concerning the area of spirituality. Satisfaction differed significantly between groups for the field of leisure.

          Conclusion

          The results for the interviewed patients with multiple myeloma point out the need to take into account the importance of social and individual aspects when reflecting on QoL. Similar findings have been reported for different samples. The relevance of an individualized approach is illustrated by the fact that individually named areas of life were rated comparatively strongly in their importance for the patients’ QoL. An overall assessment for the current QoL by means of VAS is regarded as an adequate supplement to the SEIQoL-Profile and an alternative to the SEIQoL-DW-Index.

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          Most cited references36

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          Individual-patient monitoring in clinical practice: are available health status surveys adequate?

          Interest has increased in recent years in incorporating health status measures into clinical practice for use at the individual-patient level. We propose six measurement standards for individual-patient applications: (1) practical features, (2) breadth of health measured, (3) depth of health measured, (4) precision for cross-sectional assessment, (5) precision for longitudinal monitoring and (6) validity. We evaluate five health status surveys (Functional Status Questionnaire, Dartmouth COOP Poster Charts, Nottingham Health Profile, Duke Health Profile, and SF-36 Health Survey) that have been proposed for use in clinical practice. We conducted an analytical literature review to evaluate the six measurement standards for individual-patient applications across the five surveys. The most problematic feature of the five surveys was their lack of precision for individual-patient applications. Across all scales, reliability standards for individual assessment and monitoring were not satisfied, and the 95% CIs were very wide. There was little evidence of the validity of the five surveys for screening, diagnosing, or monitoring individual patients. The health status surveys examined in this paper may not be suitable for monitoring the health and treatment status of individual patients. Clinical usefulness of existing measures might be demonstrated as clinical experience is broadened. At this time, however, it seems that new instruments, or adaptation of existing measures and scaling methods, are needed for individual-patient assessment and monitoring.
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            A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS.

            Quality of life is an increasingly important outcome measure in medicine and health care. Many measures of quality of life present patients with predetermined lists of questions that may or may not be relevant to the individual patient. This paper describes a brief measure, the SEIQoL-DW, which is derived from the schedule for evaluation of individual quality of life (SEIQoL). The measure allows respondents to nominate the areas of life which are most important, rate their level of functioning or satisfaction with each, and indicate the relative importance of each to their overall quality of life. Given its practicality and brevity, the measure should prove particularly useful in clinical situations where patient generated data on quality of life is important. This article describes the first clinical application of the measure, assessing the quality of life of a cohort of patients with HIV/AIDS managed in general practice.
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              The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW.

              To review published studies regarding the use, feasibility and psychometric performance of the schedule for the evaluation of individual quality of life-direct weighting (SEIQoL-DW) in clinical research. Systematic literature review. Studies using the SEIQoL-DW were included if they were published in English and employed a quantitative design. A pre-defined checklist was used to analyse the reported results. Thirty-nine relevant articles were identified. The SEIQoL-DW has been included in studies relating to a variety of populations, including those who are severely ill. The results of convergent and discriminant validity support our hypotheses in which SEIQoL-DW was expected to correlate moderately to high with measures of global QoL, life satisfaction and mental health and weakly with measures of functional status and health. The SEIQoL-DW appears to be a feasible and valid instrument. The lack of association between the Index score and health, functional status, demographic and clinical parameters may be explained by the instrument's focus on global QoL and by that of the idiographic measurement approach reflecting the capacity of a patient to value domains other than health in life, despite having health problems. Nevertheless, continued psychometric evaluation in large populations with a longitudinal design is recommended.
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                Author and article information

                Contributors
                Duerner_J@ukw.de
                Hans.Reinecker@uni-bamberg.de
                Csef_H@ukw.de
                Journal
                Springerplus
                Springerplus
                SpringerPlus
                Springer International Publishing (Cham )
                2193-1801
                23 August 2013
                23 August 2013
                2013
                : 2
                : 397
                Affiliations
                [ ]Department of Psychosomatic Medicine and Psychotherapy, Clinic of Internal Medicine II, Julius-Maximilians-University of Würzburg, Würzburg, Germany
                [ ]Department of Clinical Psychology and Psychotherapy, Otto-Friedrich-University of Bamberg, Bamberg, Germany
                Article
                472
                10.1186/2193-1801-2-397
                3765605
                24024087
                6081518b-89da-41a0-83c3-036c7fbb5516
                © Dürner et al.; licensee Springer. 2013

                This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 8 July 2013
                : 27 July 2013
                Categories
                Research
                Custom metadata
                © The Author(s) 2013

                Uncategorized
                cancer,psychooncology,individual quality of life,multiple myeloma
                Uncategorized
                cancer, psychooncology, individual quality of life, multiple myeloma

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