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Development and Validation of Fear of Relapse Scale for Relapsing-Remitting Multiple Sclerosis

Background: Multiple Sclerosis (MS) is a potentially debilitating chronic disease in most cases diagnosed after an acute relapse and characterized by the occurrence of relapse in most patients. Due to the unknown course of the disease patients in early phases must deal with the stress of anticipation of a relapse and unpredictable consequences of that relapse. Objective: This is the first effort to develop a self-report measure of Fear of Relapse (FoR) in patients with Relapsing-Remitting (RR) MS. Methods: A 31- item scale was created from in-depth clinical interviews with 33 RRMS patients. This scale was completed by 168 RRMS patients (51 patients completed the scale one more time a month later) who completed the Intolerance of Uncertainty Scale (IUS) and Depression, Anxiety and Stress Scale (DASS) as well. Results: A factor analysis revealed three components, and five items failed to load on any of them. The final version of the scale consisted of 26 items. Two-components solution factor analysis after pooling the FoR items once with DASS items and once with IUS items revealed independency of the FoR from previously developed scales. Cronbach’s Alpha was equal to 0.92. Test-retest reliability for total score was equal to 0.74 (p<0.001). Conclusion: The FoR scale proved to be a highly reliable and valid measure in RRMS patients and application of that in future studies trying to create a psychological profile of patients at earlier stages of the disease can help researchers and clinicians to have a more comprehensive image.