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Health-related quality of life in patients with systemic lupus erythematosus: Development and validation of a lupus specific symptom checklist

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Abstract

Reliable and sensitive measures are needed to evaluate the quality of life (QoL) in patients with systemic lupus erythematosus (SLE). No lupus specific questionnaires are available. This study describes the development and validation of a disease-specific questionnaire for lupus patients, which assesses the presence and burden of 38 disease- and treatment-related symptoms: the SLE Symptom Checklist (SSC). Reliability and reproducibility were tested in respectively 87 and 28 stable SLE patients. The internal consistency (Cronbach's α coefficients 0.89) and test–retest reliability (Pearson product–moment correlation coefficient between 0.67 and 0.87) were satisfactory. Concurrent validity was supported by significant, but moderate correlations with other measures of subjective well-being and functional status. Responsiveness was measured in 17 patients with lupus nephritis treated with cyclophosphamide, at start of therapy and 1 year thereafter. A significant change in number of symptoms and total distress level was found. It is concluded that the SSC has satisfactory psychometric properties and appears suitable for both clinical and research purposes.

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Authors and Affiliations

  1. Division of Nephrology, University Medical Center, Nijmegen, The Netherlands

    C. Grootscholten

  2. Division of Nephrology, University Medical Center, The Netherlands

    G. Ligtenberg

  3. Department of Rheumatology and Clinical Immunology, University Medical Center, The Netherlands

    R.H.W.M. Derksen

  4. Division of Clinical and Health Psychology, Utrecht University, Utrecht, The Netherlands

    K.M.G. Schreurs

  5. Division of Nephrology, Academic Medical Center, Amsterdam, The Netherlands

    J.W. de Glas-Vos

  6. Division of Internal Medicine, Eemland Hospital, Amersfoort, The Netherlands

    E.C. Hagen

  7. Division of Internal Medicine, St. Joseph Hospital, Veldhoven, The Netherlands

    A.W.L. van den Wall Bake

  8. Division of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands

    T.W.J. Huizinga

  9. Division of Rheumatology, University Medical Center, Nijmegen, The Netherlands

    F.H.J. van den Hoogen

  10. Department of Internal Medicine, Division of Clinical Immunology, University Hospital, Groningen, The Netherlands

    M. Bijl

  11. Division of Medical Statistics, Leiden University Medical Center, Leiden, The Netherlands

    J.C. van Houwelingen

  12. Division of Medical Psychology, VU University Medical Center, Amsterdam, The Netherlands

    F.J Snoek

  13. Division of Nephrology, University Medical Center, Nijmegen, The Netherlands

    J.H.M. Berden

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  1. C. Grootscholten
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  8. T.W.J. Huizinga
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Grootscholten, C., Ligtenberg, G., Derksen, R. et al. Health-related quality of life in patients with systemic lupus erythematosus: Development and validation of a lupus specific symptom checklist. Qual Life Res 12, 635–644 (2003). https://doi.org/10.1023/A:1025176407776

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