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      A systematic review of quality of life research in medicine and health sciences

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          Abstract

          Purpose

          Quality of life (QOL) is an important concept in the field of health and medicine. QOL is a complex concept that is interpreted and defined differently within and between disciplines, including the fields of health and medicine. The aims of this study were to systematically review the literature on QOL in medicine and health research and to describe the country of origin, target groups, instruments, design, and conceptual issues.

          Methods

          A systematic review was conducted to identify research studies on QOL and health-related quality of life (HRQOL). The databases Scopus, which includes Embase and MEDLINE, CINAHL, and PsycINFO were searched for articles published during one random week in November 2016. The ten predefined criteria of Gill and Feinstein were used to evaluate the conceptual and methodological rigor.

          Results

          QOL research is international and involves a variety of target groups, research designs, and QOL measures. According to the criteria of Gill and Feinstein, the results show that only 13% provided a definition of QOL, 6% distinguished QOL from HRQOL. The most frequently fulfilled criteria were: (i) stating the domains of QOL to be measured; (ii) giving a reason for choosing the instruments used; and (iii) aggregating the results from multiple items.

          Conclusion

          QOL is an important endpoint in medical and health research, and QOL research involves a variety of patient groups and different research designs. Based on the current evaluation of the methodological and conceptual clarity of QOL research, we conclude that the majority QOL studies in health and medicine have conceptual and methodological challenges.

          Electronic supplementary material

          The online version of this article (doi:10.1007/s11136-019-02214-9) contains supplementary material, which is available to authorized users.

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          Most cited references13

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          Critique on the conceptualisation of quality of life: a review and evaluation of different conceptual approaches.

          Over the past decades, the concept of quality of life has been of paramount importance for evaluating the quality and outcome of health care. Despite its importance, there is still no consensus on the definition or proper measurement of quality of life. Several concept analyses of quality of life have been published. However, they appear to have had a rather limited impact on how empirical studies are conducted. Therefore, we present an overview and critique of different conceptualisations of quality of life, with the ultimate goal of making quality of life a less ambiguous concept. We also describe six conceptual problems. These problems were used as criteria to evaluate the appropriateness of different conceptualisations. This evaluation suggests that defining quality of life in terms of life satisfaction is most appropriate, because this definition successfully deals with all the conceptual problems discussed. The result of our concept evaluation was not surprising for it corroborated the results of several concept analyses and the findings of a structural equation modelling study. Based on the findings revealed by our review, we propose that the scientific community should revitalise the conceptual discussion on quality of life. Furthermore, our findings can assist researchers in developing more rigourous quality-of-life research.
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            Generic health-related quality-of-life assessment in children and adolescents: methodological considerations.

            The health-related quality of life (HR-QOL) of children and adolescents is increasingly considered a relevant topic for research. Instruments to assess quality of life in children and adolescents of a generic as well as disease- or condition-specific nature are being developed and applied in epidemiological surveys, clinical studies, quality assurance and health economics. This paper attempts to give an overview on the state of the art of HR-QOL assessment in children as it relates to methodological and conceptual challenges. Instruments available in international or cross-cultural research to assess HR-QOL in generic terms were identified and described according to psychometric data provided and the width of application. In an initial literature search, several challenges in the assessment of child and adolescent HR-QOL were identified, ranging from conceptual and methodological to practical aspects. Seven specific major issues were considered: (i) What are the dimensions of HR-QOL relevant for children and adolescents, and do suitable instruments for their measurement exist? (ii) Can these dimensions be collected in a cross-culturally comparable way? (iii) What advantages and disadvantages do self-rated versus externally evaluated HR-QOL measurements of children and adolescents have? (iv) How can HR-QOL be assessed in an age-appropriate way? (v) What are the advantages and disadvantages of disease-specific and generic data collection? (vi) What advantages and disadvantages do profile and index instruments have? (vii) How can HR-QOL be connected with utility- preference values? In a second literature search we identified nine generic HR-QOL instruments and four utility health state classification systems that complied with the prespecified inclusion criteria. It was concluded that (i) HR-QOL instruments are available to assess the dimensions of the construct relevant to children and adolescents; (ii) provided that an instrument was constructed in an appropriate way, the dimensions of HR-QOL can be measured in an interculturally comparable manner; (iii) the HR-QOL of children and adolescents can and should be ascertained by self-rating; (iv) the measurement instruments used have to consider maturity and cognitive development; (v) only generic quality-of-life instruments allow for an assessment of HR-QOL in both healthy and chronically ill children and adolescents; (vi) the representation of HR-QOL achieved through a singular index value is connected to strict psychometric conditions: the index instrument has to be tailored to these psychometric conditions; (vii) how far utility measures are employable with children and adolescents has to be investigated in further studies. The problem aspects identified indicate the necessity for further research. Nevertheless, instruments for assessing the HR-QOL of children and adolescents can be identified that meet the requirements mentioned above.
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              Assessing health related quality of life in medicine. An overview over concepts, methods and applications in international research.

              Health-related quality of life is increasingly accepted as relevant endpoint in medicine. Available work pertains to development and psychometric testing of measurement instruments. Theoretical papers are largely missing, inclusion of instruments in clinical trials, however, has begun now, especially in oncology and cardiology. Based on a review of the available literature, areas of application of quality of life research are described. Focus of attention are conceptual, methodological and practical challenges as well as the contribution of quality of life research to evaluating the results of medical treatment.
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                Author and article information

                Contributors
                004790577898 , Kristin.haraldstad@uia.no
                a.k.wahl@medisin.uio.no
                Randi.Andenas@oslomet.no
                john.andersen@hvl.no
                manderse@ous-hf.no
                Elisabeth.Grov.Beisland@hvl.no
                christineraheim.borge@lds.no , c.r.borge@medisin.uio.no
                eivind.engebretsen@medisin.uio.no
                martin.eisemann@uit.no
                Liv.Halvorsrud@oslomet.no
                Tove.Aminda.Hanssen@unn.no
                Anne.Haugstvedt@hvl.no
                Trude.Haugland@diakonova.no
                venke.agnes.johansen@helse-bergen.no
                lisbeth.gravdal-kvarme@oslomet.no
                m.h.larsen@medisin.uio.no
                Borghild.Loyland@oslomet.no
                lise.lovereide@stavanger.kommune.no
                philip.moons@kuleuven.be
                tone.merete.norekval@helse-bergen.no
                Lis.Ribu@oslomet.no
                gudrun.e.rohde@uia.no
                kristin.h.urstad@uis.no
                Solvi.Helseth@oslomet.no
                Journal
                Qual Life Res
                Qual Life Res
                Quality of Life Research
                Springer International Publishing (Cham )
                0962-9343
                1573-2649
                11 June 2019
                11 June 2019
                2019
                : 28
                : 10
                : 2641-2650
                Affiliations
                [1 ]GRID grid.23048.3d, ISNI 0000 0004 0417 6230, Faculty of Health- and Sport Sciences, , University of Agder, ; P.O Box 422, 4604 Kristiansand, Norway
                [2 ]GRID grid.5510.1, ISNI 0000 0004 1936 8921, Department of Health Sciences, , University of Oslo, ; P.O. Box 1084, Blindern, 0317 Oslo, Norway
                [3 ]GRID grid.412414.6, ISNI 0000 0000 9151 4445, Faculty of Health, , OsloMet – Oslo Metropolitan University, ; St. Olavs plass, P.O. Box 4, 0130 Oslo, Norway
                [4 ]GRID grid.477239.c, Department of Health and Caring Sciences, , Western Norway University of Applied Sciences (HVL), ; P.O. Box 7030, 5020 Bergen, Norway
                [5 ]GRID grid.10919.30, ISNI 0000000122595234, Faculty of Health Sciences, , UiT The Arctic University of Norway, ; P.O. Box 6050, Langnes, Tromsø, Norway
                [6 ]GRID grid.412244.5, ISNI 0000 0004 4689 5540, University Hospital of North Norway, ; P.O. Box 100, 9038 Tromsø, Norway
                [7 ]GRID grid.463529.f, Faculty of Health Studies, , VID Specialized University, ; Mailbox 184, Vinderen, NO 0319 Norway
                [8 ]GRID grid.5596.f, ISNI 0000 0001 0668 7884, Department of Public Health and Primary Care, , University of Leuven, ; P.O. Box 7001, Kapucijnenvoer, 3000 Leuven, Belgium
                [9 ]GRID grid.412008.f, ISNI 0000 0000 9753 1393, Haukeland University Hospital, ; P.O. Box 1400, 5021 Bergen, Norway
                [10 ]GRID grid.18883.3a, ISNI 0000 0001 2299 9255, Faculty of Health Sciences, , University of Stavanger, ; P.O. Box 8600, Forus, Norway
                [11 ]GRID grid.414311.2, ISNI 0000 0004 0414 4503, Department of Clinical Research, , SSHF, ; P.O. Box 416, 4604 Kristiansand, Norway
                Author information
                http://orcid.org/0000-0002-7364-147X
                Article
                2214
                10.1007/s11136-019-02214-9
                6761255
                31187410
                dc9c9e11-0392-4c3c-b615-920a2950d8bf
                © The Author(s) 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 20 May 2019
                Categories
                Review
                Custom metadata
                © Springer Nature Switzerland AG 2019

                Public health
                quality of life,health-related quality of life,systematic review
                Public health
                quality of life, health-related quality of life, systematic review

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