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  • 1.
    Kreimeier, Simone
    et al.
    Bielefeld University, Bielefeld, Germany.
    Åström, Mimmi
    Karolinska Institutet / Stockholm County Council.
    Burström, Kristina
    Karolinska Institutet / Stockholm County Council.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College, Department of Health Sciences. Karolinska Institutet.
    Gusi, Narcis
    University of Extremadura, Badajoz, Spain.
    Herdman, Michael
    Office of Health Economics, London, UK.
    Kind, Paul
    University of Leeds, Leeds, UK / Higher School of Economics, St Petersburg, Russia.
    Perez-Sousa, Miguel A
    University of Extremadura, Badajoz, Spain.
    Greiner, Wolfgang
    Bielefeld University, Bielefeld, Germany.
    EQ-5D-Y-5L: developing a revised EQ-5D-Y with increased response categories.2019In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 28, no 7, p. 1951-1961Article in journal (Refereed)
    Abstract [en]

    PURPOSE: EQ-5D-Y is a generic measure of health status for children and adolescents aged 8-15 years. Originally, it has three levels of severity in each dimension (3L). This study aimed to develop a descriptive system of EQ-5D-Y with an increased number of severity levels and to test comprehensibility and feasibility.

    METHODS: The study was conducted in Germany, Spain, Sweden and the UK. In Phase 1, a review of existing instruments and focus group interviews were carried out to create a pool of possible labels for a modified severity classification. Participants aged 8-15 rated the severity of the identified labels in individual sorting and response scaling interviews. In Phase 2, preliminary 4L and 5L versions were constructed for further testing in cognitive interviews with healthy participants aged 8-15 years and children receiving treatment for a health condition.

    RESULTS: In Phase 1, a total of 233 labels was generated, ranging from 37 (UK) to 79 labels (Germany). Out of these, 7 to 16 possible labels for each dimension in the different languages were rated in 255 sorting and response scaling interviews. Labels covered an appropriate range of severity on the health continuum in all countries. In Phase 2, the 5L version was generally preferred (by 68-88% of the participants per country) over the 4L version.

    CONCLUSIONS: This multinational study has provided a version of the EQ-5D-Y with 5 severity levels in each dimension. This extended version (EQ-5D-Y-5L) requires testing its psychometric properties and its performance compared to that of the original EQ-5D-Y-3L.

  • 2.
    Prignitz Sluys, Kerstin
    et al.
    The Swedish Red Cross University College, Department of Technology and Welfare. Department of Molecular Medicine and Surgery, Karolinska University Hospital; Department of Molecular Medicine and Surgery, Karolinska Institutet; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Lannge, Margaretha
    Department of Pediatric Emergency Surgery, Astrid Lindgrens’ Children’s Hospital, Karolinska University Hospital.
    Iselius, Lennart
    Department of Molecular Medicine and Surgery, Karolinska Institutet.
    Eriksson, Lars E.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet; Department of Infectious Diseases Karolinska University Hospital, Huddinge; School of Health Sciences, City University London, UK.
    Six years beyond pediatric trauma: child and parental ratings of children’s health-related quality of life in relation to parental mental health2015In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 24, no 11, p. 2689-2699Article in journal (Refereed)
    Abstract [en]

    Purpose

    To examine the relationship between child self-report and parent proxy report of health-related quality of life (HRQL) and how parents’ mental health status relates to the HRQL ratings 6 years after minor to severe injury of the child.

    Materials and methods

    This cross-sectional cohort study was performed at a regional pediatric trauma center in Stockholm, Sweden. The PedsQL 4.0 versions for ages 5–7, 8–12, and 13–18 years were completed by 177 child–parent dyads 6 years after injury to the child. The parents also rated their own mental health through the mental health domain (MH) in the SF-36 Health Survey.

    Results

    The children’s median age was 13 years (IQR 10–16 years), 54 % were males, and the median ISS was 5 (IQR 2–9). Most of the parents were female (77 %), born in Sweden (79 %), and half had university degrees. There was no statistically significant difference between child self-report and parent proxy report in any of the PedsQL 4.0 scales or summary scales. The levels of agreement between child self-report and parent proxy reports were excellent (ICC ≥ 0.80) for all scales with the exception of emotional functioning (ICC 0.53) which also was the scale with the lowest internal consistency in child self-report (α 0.60). Multiple regression analyses showed that worse parental mental health status correlated with worse child self-report and parent proxy report of children’s HRQL.

    Conclusions

    Children and their parents’ reports on child’s HRQL were in agreement. Decreased mental health in parents was associated with lower scores on parent proxy reports and child self-reports of HRQL after injury. The current investigation highlights the possible relationship between parent’s mental health status and children’s HRQL long after an injury, which should be considered in future investigations and in clinical care.

  • 3.
    Ravens-Sieberer, Ulrike
    et al.
    Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
    Wille, Nora
    Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
    Badia, Xavier
    Health Economics and Outcomes Research, IMS Health, Doctor Ferran 25-27, 2, 08034, Barcelona, Spain.
    Bonsel, Gouke
    Institute of Health Policy and Management, and Department of Prenatal Medicine and Obstetrics (Location Woudenstein, L3-060), Erasmus Medical Centre, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands.
    Burström, Kristina
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Nobels väg 15a, 171 77, Stockholm.
    Cavrini, Gulia
    Department of Statistics, University of Bologna, Via delle Belle Arti 41, 40126, Bologna, Italy.
    Devlin, Nancy
    Office of Health Economics and Senior Associate, King’s Fund, 12 Whitehall, London, SW1A2DY, UK.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Gusi, Narcis
    Faculty of Sport Sciences, University of Extremadura, Avda Universidad, 10071, Caceres, Spain.
    Herdman, Michael
    CIBER en Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain.
    Jelsma, Jennifer
    School of Health and Rehabilitation Sciences, Division of Physiotherapy, University of Cape Town, Anzio Road Observatory, 7925, Cape Town, South Africa.
    Kind, Paul
    Centre for Health Economics, Alcuin College, University of York, York, YO10 5DD, UK.
    Olivares, Pedro R.
    Faculty of Sport Sciences, University of Extremadura, Avda Universidad, 10071, Caceres, Spain.
    Scalone, Luciana
    Center of Pharmacoeconomics, University of Milan, Via Vanvitelli 32, 20129, Milan, Italy.
    Greiner, Wolfgang
    Department for Health Economics and Health Care Management, School of Public Health, University of Bielefeld, P.O. Box 10 01 31, 33501, Bielefeld, Germany.
    Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study2010In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 19, no 6, p. 887-897Article in journal (Refereed)
    Abstract [en]

    Purpose

    To examine the feasibility, reliability, and validity of the newly developed EQ-5D-Y.

    Methods

    The EQ-5D-Y was administered in population samples of children and adolescents in Germany, Italy, South Africa, Spain, and Sweden. Percentages of missing values and reported problems were calculated. Test–retest reliability was determined. Spearman’s rank correlation coefficients with other generic measures of HRQOL were calculated. Known groups’ validity was examined by comparing groups with a priori expected differences in HRQOL.

    Results

    Between 91 and 100% of the respondents provided valid scorings. Sweden had the lowest proportion of reported problems (1–24.9% across EQ-5D-Y dimensions), with the highest proportions in South Africa (2.8–47.3%) and Italy (4.3–39.0%). Percentages of agreement in test–retest reliability ranged between 69.8 and 99.7% in the EQ-5D-Y dimensions; Kappa coefficients were up to 0.67. Correlation coefficients with other measures of self-rated health indicated convergent validity (up to r = −0.56). Differences between groups classified according to presence of chronic conditions, self-rated overall health and psychological problems provided preliminary evidence of known groups’ validity.

    Conclusions

    Results provide preliminary evidence of the instrument’s feasibility, reliability and validity. Further study is required in clinical samples and for possible future applications in economic analyses.

  • 4.
    Saboonchi, Fredrik
    et al.
    Red Cross University College of Nursing. Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet / Stress Research Institute, University of Stockholm.
    Wennman-Larsen, Agneta
    Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet.
    Alexanderson, Kristina
    Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet.
    Petersson, Lena-Marie
    Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet.
    Examination of the construct validity of the Swedish version of Hospital Anxiety and Depression Scale in breast cancer patients2013In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 22, no 10, p. 2849-2856Article in journal (Refereed)
    Abstract [en]

    Purpose

    To examine the construct validity of the Swedish version of Hospital Anxiety and Depression Scale (HAD) in women with breast cancer.

    Method

    Acquired data on HAD from 727 women who recently had breast cancer surgery, were aged 20–63 years and worked before diagnosis, and had no previous breast cancer (n = 725) were subjected to confirmatory factor analysis examining the viability of three hypothesized measurement models.

    Results

    The analysis showed adequate fit to the data for both bi-dimensional and three-factorial models of HAD. The single-factorial model, however, was shown to have inferior fit to the data. Substantive correlations were found between anxiety and depression in the bi-dimensional model, and negative affectivity and anxiety in the three-factorial model of HAD.

    Conclusions

    The findings support the utility of scoring procedure based on the original bi-dimensional model, but add indication of co-occurrence of anxiety and depression in this patient population. The discriminant validity of a third factor of negative affectivity in a three-factorial model, however, remains unclear.

  • 5.
    Wettergren, L
    et al.
    Uppsala University / Karolinska Institute.
    Björkholm, M
    Karolinska University Hospital and Karolinska Institute.
    Langius-Eklöf, Ann
    Red Cross University College of Nursing. Karolinska Institute.
    Validation of an extended version of the SEIQoL-DW in a cohort of Hodgkin lymphoma' survivors2005In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 14, no 10, p. 2329-2333Article in journal (Refereed)
    Abstract [en]

    Individual measures of quality of life (QoL) have been initiated to overcome the possible limitations with standardized measures using predefined domains for evaluation. The Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) uses personal interviews to explore the five most important areas in life, both positive and negative, crucial for QoL. The nominated areas are rated regarding satisfaction and weighted to capture the importance of each selected area. The Swedish version has been extended with a disease-specific module, which evaluates the areas in life influenced by disease. The aim of this study was to validate the disease-specific SEIQoL-DW and furthermore, to evaluate the influence of the importance ratings on the overall index score in a cohort of Hodgkin lymphoma survivors. The results support the construct validity of the disease-specific SEIQoL-DW and indicate that the instrument appears to be a sensitive measure with ability to differentiate between groups with disparate subjective health status. The SEIQoL-DW succeeds to capture both positive and negative areas in life influenced by disease. The present study gave no evidence that the weighting procedure has any impact on the total index. The results support the use of the new extended version including a disease-specific module.

  • 6.
    Wille, Nora
    et al.
    Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
    Badia, Xavier
    Health Economics & Outcomes Research, IMS Health, Doctor Ferran 25-27, 2, 08034, Barcelona, Spain.
    Bonsel, Gouke
    Department of Prenatal Medicine and Obstetrics (Location Woudenstein, L3-060), Erasmus Medical Centre, Institute of Health Policy & Management, P.O. Box 1738, 3000 DR, Rotterdam, The Netherlands.
    Burström, Kristina
    Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Nobels väg 15a, 171 77, Stockholm, Sweden.
    Cavrini, Gulia
    Department of Statistics, University of Bologna, Via delle Belle Arti 41, 40126, Bologna, Italy.
    Devlin, Nancy
    Office of Health Economics & Senior Associate, King’s Fund, 12 Whitehall, London, SW1A2DY, UK.
    Egmar, Ann-Charlotte
    Red Cross University College of Nursing.
    Greiner, Wolfgang
    Department for Health Economics and Health Care Management, University of Bielefeld, School of Public Health, P.O. Box 10 01 31, 33501, Bielefeld, Germany.
    Gusi, Narcis
    University of Extremadura, Faculty of Sport Sciences, Avda Universidad, 10071, Caceres, Spain.
    Herdman, Michael
    CIBER en Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain.
    Jelsma, Jennifer
    Division of Physiotherapy, University of Cape Town, School of Health and Rehabilitation Sciences, Anzio Road Observatory, Cape Town, 7925, South Africa.
    Kind, Paul
    Centre for Health Economics, Alcuin College, University of York, York, YO10 5DD, UK.
    Scalone, Luciana
    Department of Clinical Medicine and Prevention, Research Centre On Public Health, University of Milano – Bicocca, Villa Serena, Via Pergolesi 33, 20052, Monza, Italy.
    Ravens-Sieberer, Ulrike
    Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
    Development of the EQ-5D-Y: a child-friendly version of the EQ-5D2010In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 19, no 6, p. 875-886Article in journal (Refereed)
    Abstract [en]

    Purpose

    To develop a self-report version of the EQ-5D for younger respondents, named the EQ-5D-Y (Youth); to test its comprehensibility for children and adolescents and to compare results obtained using the standard adult EQ-5D and the EQ-5D-Y.

    Methods

    An international task force revised the content of EQ-5D and wording to ensure relevance and clarity for young respondents. Children’s and adolescents’ understanding of the EQ-5D-Y was tested in cognitive interviews after the instrument was translated into German, Italian, Spanish and Swedish. Differences between the EQ-5D and the EQ-5D-Y regarding frequencies of reported problems were investigated in Germany, Spain and South Africa.

    Results

    The content of the EQ-5D dimensions proved to be appropriate for the measurement of HRQOL in young respondents. The wording of the questionnaire had to be adapted which led to small changes in the meaning of some items and answer options. The adapted EQ-5D-Y was satisfactorily understood by children and adolescents in different countries. It was better accepted and proved more feasible than the EQ-5D. The administration of the EQ-5D and of the EQ-5D-Y causes differences in frequencies of reported problems.

    Conclusions

    The newly developed EQ-5D-Y is a useful tool to measure HRQOL in young people in an age-appropriate manner.

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