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

C. Grootscholten, G. Ligtenberg, R. H. W. M. Derksen, K. M. G. Schreurs, J. W. de Glas-Vos, E. C. Hagen, A. W. L. van den Wall Bake, T. W. J. Huizinga, F. H. J. van den Hoogen, M. Bijl, J. C. van Houwelingen, F. J. Snoek, J. H. M. Berden

Research output: Contribution to journalArticleAcademicpeer-review

73 Citations (Scopus)


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 alpha 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
Original languageEnglish
Pages (from-to)635-644
Number of pages10
JournalQuality of life research
Issue number6
Publication statusPublished - 1 Sept 2003


  • Health status
  • Quality of life
  • Questionnaire
  • Systemic Lupus Erythematosus
  • Validation

Cite this