The Scleroderma Patient-Centered Intervention Network Self-Management Program: Protocol for a Randomized Feasibility Trial.

摘要: Background Systemic sclerosis (SSc), or scleroderma, is a rare disease that often results in significant disruptions to activities of daily living and can negatively affect physical psychological well-being. Because there no known cure, SSc treatment focuses on reducing symptoms disability improving health-related quality life (HRQoL). Self-management programs are increase self-efficacy for management many chronic diseases. The Scleroderma Patient-centered Intervention Network (SPIN) developed Web-based self-management program (SPIN self-management; SPIN-SELF) improve HRQoL patients with SSc. Objective proposed study aims assess the feasibility conducting full-scale randomized controlled trial (RCT) SPIN-SELF by evaluating implementation processes, required resources management, scientific aspects, participant acceptability usage program. Methods will be conducted via SPIN Cohort. Cohort was as framework embedded pragmatic trials using cohort multiple RCT design. In total, 40 English-speaking participants low (Self-Efficacy Managing Chronic Disease Scale score ≤7), who have indicated interest program, 3:2 ratio into usual care 3 months. Feasibility outcomes include patient Results Enrollment occurred between July 5, 2019, 27, 2019. By November 25, data collection completed. Data analysis underway, expected published 2020. Conclusions self-help tool may disease-management ensure methodology robust, feasible, consistent expectations. guide adjustments need implemented before undertaking International registered report identifier (irrid) DERR1-10.2196/16799.