Patient-reported gastrointestinal involvement is associated with reduced quality of life and disability in systemic sclerosis

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Objectives: To investigate the impact of gastrointestinal involvement in systemic sclerosis affecting the quality of life and systemic sclerosis-related disability using patient-reported outcome measurements (PROMs). Methods: Data from 160 consecutive systemic sclerosis patients were collected, including clinical characteristics and self-assessment questionnaires. The severity of gastrointestinal involvement was determined by the University of California Los Angeles Scleroderma Clinical Trials Consortium gastrointestinal tract 2.0 (UCLA-GIT 2.0): patients were classified as having "none-to-mild" symptoms (total score = 0.00-0.49: Group A), "moderate" symptoms (Group B), and "severe-to-very severe" symptoms (Group C). All investigations were repeated following 1 year to check the reliability (n = 149). Results: Quality of life (EuroQol-5 Dimension anxiety/depression, Physical Component Summary, and Mental Component Summary of Short-Form Health Survey-36) and disability questionnaires (Health Assessment Questionnaire Disability Index, Scleroderma Health Assessment Questionnaire), Scleroderma Impact of Disease showed moderate significant correlation with UCLA-GIT 2.0 (rho: 0.400, -0.484, -0.468, 0.400, 0.436, 0.646, respectively). These correlations remained significant when tested in the two main subgroups (limited and diffuse cutaneous systemic sclerosis). Disease duration and UCLA-GIT 2.0 score did not show any correlation (rho: .055, p = 0.488). The average gastrointestinal involvement complaint of early systemic sclerosis (disease duration < 3 years, n = 24) subgroup measured by the UCLA-GIT 2.0 was not different from the rest of the cases (0.13 (0.03-0.46) vs 0.22 (0.08-0.45), p = 0.280). All investigated PROMs regarding quality of life and disability showed worse results in Group B when compared with patients in Group A. Similarly, patients in Group C have worse results compared to Group B. These correlations with the UCLA-GIT 2.0 score were confirmed during the 1-year follow-up. Conclusion: Moderate/severe gastrointestinal involvement symptoms based on the UCLA-GIT 2.0 are associated with worse quality of life and disability. This correlation holds for both systemic sclerosis subgroups and independent of disease duration: moderate/severe gastrointestinal involvement complaints develop early in systemic sclerosis parallel with early onset of decreased quality of life and disability.

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