The assessment of health-related family role functioning in systemic lupus erythematosus: Preliminary validation of the SLE-FAMILY

Abstract

Objective:

Individuals with systemic lupus erythematosus (SLE) often experience symptoms that affect family relationships, an important component of quality of life. To assess the impact of SLE on family role functioning we developed the SLE-FAMILY which evaluates six domains:Fatigue, Activity participation, Mentalhealth, Isolation, Love and intimacy and You (fulfilling family roles). The objectives of this study were to pilot test and achieve preliminary validation for the SLE-FAMILY.

Methods:

This was a three phase study. In Phase 1(development), domains were identified and items generated for evaluation. During Phase 2 (pilot test), a pilot test was conducted to assess the performance of candidate items. In Phase 3 (initial validation), 52 individuals with SLE completed questionnaires including the 6-item SLE-FAMILY. Data were analyzed for internal consistency reliability; validity was assessed using correlations between the SLE-FAMILY and well-validated measures.

Results:

The SLE-FAMILY had good test-retest reliability (0.82) and internal consistency (0.67). Reliability analysis of individual items revealed weakness in the performance of Item 5. We reviewed raw data and determined that nineindividuals likely overlooked the reverse-scoring of Item 5, thus explaining its poor reliability. When thesenineindividuals were excluded from analysis, alpha increased to 0.71, while test-retest reliability remained acceptable (0.75). Spearman's rho correlations supported the validity of the SLE-FAMILY. A pilot test of the SLE-FAMILY without the reverse-scored item was conducted; results suggested that the modified version is superior to the initial form.

Conclusion:

The SLE-FAMILY is a promising new instrument for robust measurement of family role functioning. © 2012 by the American College of Rheumatology