Comparison of the psychometric properties of health-related quality of life measures used in adults with systemic lupus erythematosus: a review of the literature.

OBJECTIVE: A review of the literature was undertaken to evaluate the development and psychometric properties of health-related quality of life (HRQoL) measures used in adults with SLE. This information will help clinicians make an informed choice about the measures most appropriate for research and clinical practice.

METHODS: Using the key words lupus and quality of life, full original papers in English were identified from six databases: OVID MEDLINE, EMBASE, Allied and Complementary Medicine, Psychinfo, Web of Science and Health and Psychosocial Instruments. Only studies describing the validation of HRQoL measures in adult SLE patients were retrieved.

RESULTS: Thirteen papers were relevant; five evaluated generic instruments [QOLS-S (n = 1), EQ-5D/SF-6D (n = 1), SF-36 (n = 3)] and eight evaluated disease-specific measures [L-QOL (n = 1), LupusQoL (UK) (n = 1), LupusQoL (US) (n = 1), SSC (n = 2), SLEQOL (n = 3)]. For the generic measures, there is moderate evidence of good content validity and internal consistency, whereas there is strong evidence for both these psychometric properties in disease-specific measures. There is limited to moderate evidence to support the construct validity and test-retest reliability for the disease-specific measures. Responsiveness and floor/ceiling effects have not been adequately investigated in any of the measures.

CONCLUSIONS: Direct comparison of the psychometric properties was difficult because of the different methodologies employed in the development and evaluation of the different HRQoL measures. However, there is supportive evidence that multidimensional disease-specific measures are the most suitable in terms of content and internal reliability for use in studies of adult patients with SLE.