Khatibi Ali, Moradi Nahid, Rahbari Naghmeh, Salehi Taranom, Dehghani Mohsen
Centre of Precision Rehabilitation for Spinal Pain (CPR Spine), School of Sport, Exercise and Rehabilitation Sciences, University of Birmingham, Birmingham, United Kingdom.
Centre for Human Brain Health, University of Birmingham, Birmingham, United Kingdom.
Front Psychiatry. 2020 Mar 20;11:226. doi: 10.3389/fpsyt.2020.00226. eCollection 2020.
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.
慢性病与患者长期的压力以及对与压力源相关事物产生恐惧有关。更好地管理患者病情需要探究导致慢性压力形成过程的潜在机制。多发性硬化症（MS）是一种使人衰弱的慢性病，大多数情况下在复发后被诊断出来，其特征是大多数患者会周期性复发。由于疾病进程和复发的不可预测性，复发缓解型多发性硬化症（RRMS）患者可能要应对复发预期及其不可预测后果带来的压力。复发及相关压力对患者生活质量的影响此前尚未得到研究。本研究首次尝试开发一种RRMS患者复发恐惧（FoR）的自我报告测量方法。从对33名RRMS患者的深入临床访谈中提取了31个项目，以制定该量表的初步版本。随后，168名RRMS患者完成了问卷、不确定性不耐受量表（IUS）以及抑郁、焦虑和压力量表（DASS）。51名患者在一个月后再次完成该量表。因子分析揭示了三个分量表，有五个项目未能归入其中任何一个。为了测试FoR与类似测量方法的独立性，将对26个项目的回答分别与DASS项目和IUS项目合并一次，每次都进行验证性因子分析（双分量表解决方案）。尽管FoR、DASS和IUS之间存在显著相关性，但属于FoR和DASS以及FoR和IUS的项目的独立载荷显示了FoR在评估患者方面的独立性和独特贡献。26项版本的Cronbach's alpha系数为0.92。总分的重测信度等于0.74。这些发现为该测量方法的有效性和可靠性提供了初步证据。该量表可帮助研究人员和临床医生更全面地了解患者对MS不确定性本质的体验，这对于未来通过针对潜在机制来应对这一压力源的努力而言是必要的。
