Disability in valued life activities among individuals with systemic lupus erythematosus

Abstract

Objective: To identify the prevalence of disability in a wide range of valued life activities (VLAs) among individuals with systemic lupus erythematosus (SLE), 1-year changes in such disability, and predictors of and changes in VLA disability.

Methods: Data were from 2 waves of a cohort of 829 individuals with SLE interviewed annually by telephone. VLA disability was assessed using a scale rating the difficulty of performing 21 activities. Scores were also calculated for subscales corresponding to obligatory, committed, and discretionary activities. Changes in VLA disability from baseline to 1-year followup were assessed. Sociodemographic and disease status measures were examined as predictors of and changes in VLA disability using multiple regression analyses.

Results: Almost half of the subjects were unable to perform > or =1 VLA at baseline. Almost all (91%) reported > or =1 VLA affected by SLE. One-quarter of the subjects experienced a significant increase in the number of activities they were unable to perform; approximately half experienced significant increases in the number of activities affected and in difficulty scores. Proportions of individuals whose disability increased and whose disability decreased were roughly equivalent. Disease status measures accounted for 62-72% of the variation in VLA difficulty. More severe disease status was predictive of increases in VLA difficulty; few predictors of improvements were identified.

Conclusion: VLA disability was common, with more disability noted in committed and discretionary activities than in obligatory activities. Because VLA disability has been linked to psychological well-being in previous studies, identification of factors that may protect against such disability is important.

Figure 1

Responsiveness of valued life activity (VLA) disability scores. Values to the left of the 0 point on the graph represent scores that decreased from baseline to followup on the systemic lupus erythematosus (SLE) disease activity rating, the Short Form 36 (SF-36) health survey's Physical Function (PF) subscale, and the SF-36 Physical Component Summary (PCS) subscale; values to the right represent scores that increased. Open bars represent the scores on these scales for individuals whose VLA disability worsened, solid bars (which are barely visible) represent the scores for individuals whose VLA disability did not change, and shaded bars represent the scores for individuals whose VLA disability improved.