Abstract
Chronic diseases are associated with patients’ long-term stress and development of fear to things related to the source of stress. Better management of a patients’ condition requires investigation of the underlying mechanisms that contribute to the process of development of chronic stress. Multiple Sclerosis (MS) is a debilitating chronic disease in most cases diagnosed after a relapse and characterized by the periodic occurrence of relapses in most patients. Due to the unpredictable course of the disease and relapses, patients with Relapsing-Remitting MS (RRMS) may deal with the stress of anticipation of relapse and its unpredictable consequences. The role of relapses and related stress on patients’ quality of life has not been previously investigated. This study is the first effort to develop a self-report measure of Fear of Relapse (FoR) in patients with RRMS. Thirty-one items were extracted from in-depth clinical interviews with 33 RRMS patients to develop the preliminary version of the scale. Subsequently, 168 RRMS patients completed the questionnaire, the Intolerance of Uncertainty Scale (IUS) and Depression, Anxiety, and Stress Scale (DASS). Fifty-one patients completed the scale one more time a month later. Factor analysis revealed three components, and five items failed to load on any of them. To test the FoR’s independence from similar measures, responses to 26 items were pooled once with DASS items and once with IUS items, and each time were subjected to confirmatory factor analysis (two-component solution). Despite significant correlations between FoR, DASS, and IUS Independent loadings of items belonging to FoR and DASS, and FoR and IUS revealed independence and unique contribution of FoR to the evaluation of patients. Cronbach’s alpha for the 26-item version was 0.92. Test-retest reliability for total score was equal to 0.74. These findings provide preliminary evidence of the validity and reliability of the measure. This scale can help researchers and clinicians to have a more comprehensive understanding of patients’ experience with the uncertain nature of MS, which is necessary for future efforts to address this stressor by targeting the underlying mechanism.
Highlights
Multiple sclerosis is a chronic and potentially debilitating disease of the nervous system that affects people of all ages
The progress of the disease depends on many factors based on which the disease phenotype can be divided into three subgroups, RelapsingRemitting Multiple Sclerosis (MS) (RRMS), Secondary-Progressive MS (SPMS), and Primary-Progressive MS (PPMS)
Fear of consequences, worsening, and relapse is a dominant part of MS as well
Summary
Multiple sclerosis is a chronic and potentially debilitating disease of the nervous system that affects people of all ages. Symptoms vary and may depend on one’s age, life history, and other factors. The progress of the disease depends on many factors based on which the disease phenotype can be divided into three subgroups, RelapsingRemitting MS (RRMS), Secondary-Progressive MS (SPMS), and Primary-Progressive MS (PPMS). The course of the disease is unpredictable for individuals, but the majority of patients manifest the relapsing phenotype (85% RRMS) [1]. The underlying mechanism in the relapsing phenotype is the active inflammation and subsequent demyelination in the Central Nervous System (CNS). These relapses have short and longterm consequences and might lead to the accumulation of disability
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