• Dinesh Khanna, Ron D Hays, Grace S Park, Yolanda Braun-Moscovici, Maureen D Mayes, Terry A McNearney, Vivien Hsu, Philip J Clements, and Daniel E Furst.
• University of Cincinnati, the Veterans Affairs Medical Center, Cincinnati, Ohio, USA. dinesh.khanna@uc.edu
• Arthritis Rheum. 2007 Oct 15;57(7):1280-6.

ObjectiveGastrointestinal tract (GIT) involvement occurs in approximately 90% of patients with systemic sclerosis (SSc) and has a major impact on health-related quality of life (HRQOL). We developed an HRQOL instrument for persons with SSc.MethodsThe Scleroderma Gastrointestinal Tract 1.0 (SSC-GIT 1.0) survey was developed after an extensive literature search, solicitation and consideration of experts' opinions, and 2 focus groups of 16 subjects with SSc and GIT involvement. A 75-item, self-reported measure assessing bowel involvement, emotional well-being, and social functioning was administered to subjects with SSc and GIT involvement. Also, subjects completed the Short Form 36 and rated the severity of their GIT symptoms (very mild to very severe), and items were transformed linearly to a scale with a possible range of 0 (worse health) to 100 (better health). Evaluation of psychometric properties included internal consistency reliability, test-retest reliability (1.3-week median time interval), multitrait scaling analysis, and exploratory factor analysis.ResultsStudy participants (n = 88) were primarily female (95.5%), white (79.3%), and had a mean age of 52.4 years. Self-rated severity of GIT involvement ranged from very mild or mild (36.0%) to moderate (44.0%) to severe or very severe (20.0%). Of 75 items, 23 had low item-total correlations (ConclusionThe results support the reliability and validity of the SSC-GIT 1.0 as a measure of SSc GIT involvement. Further research is needed to examine the ability to detect change over time and define minimally important differences.

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