Abstract
The aim of the UK multi-centre LupusQoL Sensitivity Study is to assess whether the LupusQoL, a systemic lupus erythematosus (SLE) specific, health-related quality of life measure is sensitive to change when disease activity improves or deteriorates.
Methods
Patients with SLE experiencing a flare (baseline) & requiring an increase in treatment were recruited. Assessments were undertaken at baseline & monthly for 9 months & included BILAG-2004 disease activity index & the LupusQoL with 8 domains and scores ranging from 0 (worst) to 100 (best HRQoL). LupusQoL domain scores when disease activity improved or deteriorated between consecutive time-points are reported as mean changes, with 95% CI constructed using robust standard errors to account for repeated patient assessments.
Results
Mean (SD) age was 40.9 (12.8) & duration since diagnosis was 9.3 (8.1) years for the 101 patients recruited; 94% females, 62.6% white Caucasians. At baseline all mean LupusQoL domain scores were <52. Scores for LupusQoL physical health (+4.0, 95%CI 1.9 to 6.1), pain (+7.7, 95%CI 4.8 to 10.5) & fatigue (+4.1, 95%CI 1.7 to 6.5) increased when BILAG improved. Scores for physical health (-4.9, 95% -9.4 to -0.4) and pain (-6.9, 95%CI -12.9 to -0.8) decreased with a major BILAG deterioration but changes with a minor deterioration were small and non-significant. The effects of improvements & deterioration in BILAG on the other LupusQoL domain scores were smaller.
Conclusions
Improvement and deterioration of LupusQoL domain scores for physical health, pain & fatigue domain scores was seen in patients with significant changes in disease activity over 1 month. Sensitivity to change of other LupusQoL domains in relation to changes in disease activity may need to be evaluated over a longer interval as the more emotive type of response to the disease & its consequences may be latent and therefore not evident at monthly intervals.
Methods
Patients with SLE experiencing a flare (baseline) & requiring an increase in treatment were recruited. Assessments were undertaken at baseline & monthly for 9 months & included BILAG-2004 disease activity index & the LupusQoL with 8 domains and scores ranging from 0 (worst) to 100 (best HRQoL). LupusQoL domain scores when disease activity improved or deteriorated between consecutive time-points are reported as mean changes, with 95% CI constructed using robust standard errors to account for repeated patient assessments.
Results
Mean (SD) age was 40.9 (12.8) & duration since diagnosis was 9.3 (8.1) years for the 101 patients recruited; 94% females, 62.6% white Caucasians. At baseline all mean LupusQoL domain scores were <52. Scores for LupusQoL physical health (+4.0, 95%CI 1.9 to 6.1), pain (+7.7, 95%CI 4.8 to 10.5) & fatigue (+4.1, 95%CI 1.7 to 6.5) increased when BILAG improved. Scores for physical health (-4.9, 95% -9.4 to -0.4) and pain (-6.9, 95%CI -12.9 to -0.8) decreased with a major BILAG deterioration but changes with a minor deterioration were small and non-significant. The effects of improvements & deterioration in BILAG on the other LupusQoL domain scores were smaller.
Conclusions
Improvement and deterioration of LupusQoL domain scores for physical health, pain & fatigue domain scores was seen in patients with significant changes in disease activity over 1 month. Sensitivity to change of other LupusQoL domains in relation to changes in disease activity may need to be evaluated over a longer interval as the more emotive type of response to the disease & its consequences may be latent and therefore not evident at monthly intervals.
| Original language | English |
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| Journal | Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research |
| DOIs | |
| Publication status | Published - Nov 2014 |