title: Assessment of health-related family role functioning in systemic lupus erythematosus: preliminary validation of a new measure.
abstract: OBJECTIVE
  Individuals with systemic lupus erythematosus (SLE) often experience symptoms that affect family relationships, which are important components of quality of life. To assess the impact of SLE on family role functioning, we developed a 6-domain (Fatigue, Activity participation, Mental health, Isolation, Love and intimacy, and You/fulfilling family roles [FAMILY]) measure. The objectives of this study were to pilot test and achieve preliminary validation for the SLE-FAMILY questionnaire.
  
  
  METHODS
  This was a 3-phase study. In phase 1 (development), domains were identified and items were 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, and validity was assessed using correlations between the SLE-FAMILY questionnaire 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 9 individuals likely overlooked the reverse scoring of item 5, thus explaining its poor reliability. When these 9 individuals were excluded from analysis, Cronbach's alpha increased to 0.71, while test-retest reliability remained acceptable (0.75). Spearman's rho correlations supported the validity of the SLE-FAMILY measure. A pilot test of the SLE-FAMILY questionnaire without the reverse-scored item was conducted; results suggested that the modified version is superior to the initial form.
  
  
  CONCLUSIONS
  The SLE-FAMILY questionnaire is a promising new instrument for robust measurement of family role functioning.
authors.affiliation: University of Michigan Medical School, Ann Arbor, USA. afton@med.umich.edu
authors.forename: Afton L
authors.initials: AL
authors.lastname: Hassett
authors.forename: Tracy
authors.initials: T
authors.lastname: Li
authors.forename: Diane C
authors.initials: DC
authors.lastname: Radvanski
authors.forename: Shantal V
authors.initials: SV
authors.lastname: Savage
authors.forename: Steven
authors.initials: S
authors.lastname: Buyske
authors.forename: Samuel A
authors.initials: SA
authors.lastname: Schiff
authors.forename: Patricia P
authors.initials: PP
authors.lastname: Katz
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D005195:Family Relations; D005221:Fatigue / Q000175:diagnosis / Q000209:etiology / Q000523:psychology; D005260:Female; D006801:Humans; D008149:Love; D008180:Lupus Erythematosus, Systemic / Q000150:complications / Q000175:diagnosis* / Q000523:psychology; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D009515:New Jersey; D010865:Pilot Projects; D011788:Quality of Life; D015203:Reproducibility of Results; D012934:Social Isolation; D058992:Social Participation; D011795:Surveys and Questionnaires