Health-Related Quality of Life in Patients with Systemic Lupus Erythematosus: Development and Validation of a Lupus Specific Symptom Checklist

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 asse...

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Bibliographic Details
Published in:Quality of life research 2003-09, Vol.12 (6), p.635-644
Main Authors: 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, van Houwelingen, J. C., F. J. Snoek, J. H. M. Berden
Format: Article
Language:English
Subjects:
Arthritis
Autoimmune diseases
Diabetes
Fatigue
Female
Health Status
Humans
Lupus
Lupus Erythematosus, Systemic - physiopathology
Lupus Erythematosus, Systemic - psychology
Lupus nephritis
Male
Quality of Life
Questionnaires
Sickness Impact Profile
Surveys and Questionnaires
Symptoms
Systemic lupus erythematosus
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Summary: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.
ISSN:0962-9343
1573-2649
DOI:10.1023/A:1025176407776