Abstract：
BACKGROUND: Although neuromyelitis optica spectrum disorder (NMOSD) has high recurrence and disability rates, cases of relapses can be recognized, and timely intervention can be provided if the risk of relapse is properly perceived. However, there have been no studies to explore patients\' perceptions of recurrence risk and coping strategies. This study aimed to explore the characteristics of relapse risk perception and coping strategies of patients with NMOSD.
METHODS: We adopted the phenomenological method of qualitative research. Face-to-face, semi-structured in-depth interviews were conducted with 15 patients with NMOSD. The interview data were then analyzed using the Colaizzi seven-step analysis.
RESULTS: The analysis revealed five major themes. The first theme was the \'perception of possibility of relapse\', which included subjectively underestimating the likelihood of relapse and shifted from underestimation to overestimation; the second theme was \'relapse warning signs perception\'; the third theme was \'perception of relapse triggers\', which included understanding relapse triggers, potential misconceptions about relapse triggers, and no identifiable cause of recurrence; the fourth theme was \'perception of the relapse consequences\', encompassing severe impairment of body structure and function, prominent psychological problems, limited family roles and social functions, and heavy financial burden; and the final theme was \'relapse risk coping strategies\', which included actively yearning for and seeking information support, recurrence risk prevention/management, limitations of coping strategies.
CONCLUSIONS: This study\'s findings revealed that newly diagnosed patients as well as those who relapsed subjectively underestimated the likelihood of relapse before they had experienced multiple (two or more) relapses. In contrast, patients who had experienced multiple relapses had transitioned from initial underestimation to subsequent overestimation. Additionally, patients\' compliance with medication was identified as a relapse-risk behaviors that was very manageable. The occurrence of relapse is associated with significant and extensive adverse effects on patients. Consequently, patients are eager to communicate with their healthcare providers regarding treatment planning and relapse management.
METHODS: We adopted the phenomenological method of qualitative research. Face-to-face, semi-structured in-depth interviews were conducted with 15 patients with NMOSD. The interview data were then analyzed using the Colaizzi seven-step analysis.
RESULTS: The analysis revealed five major themes. The first theme was the \'perception of possibility of relapse\', which included subjectively underestimating the likelihood of relapse and shifted from underestimation to overestimation; the second theme was \'relapse warning signs perception\'; the third theme was \'perception of relapse triggers\', which included understanding relapse triggers, potential misconceptions about relapse triggers, and no identifiable cause of recurrence; the fourth theme was \'perception of the relapse consequences\', encompassing severe impairment of body structure and function, prominent psychological problems, limited family roles and social functions, and heavy financial burden; and the final theme was \'relapse risk coping strategies\', which included actively yearning for and seeking information support, recurrence risk prevention/management, limitations of coping strategies.
CONCLUSIONS: This study\'s findings revealed that newly diagnosed patients as well as those who relapsed subjectively underestimated the likelihood of relapse before they had experienced multiple (two or more) relapses. In contrast, patients who had experienced multiple relapses had transitioned from initial underestimation to subsequent overestimation. Additionally, patients\' compliance with medication was identified as a relapse-risk behaviors that was very manageable. The occurrence of relapse is associated with significant and extensive adverse effects on patients. Consequently, patients are eager to communicate with their healthcare providers regarding treatment planning and relapse management.
摘要：
背景：尽管视神经脊髓炎谱系障碍（NMOSD）具有较高的复发率和致残率，复发的病例可以被识别，如果正确地认识到复发的风险，可以提供及时的干预。然而,目前还没有研究探讨患者对复发风险的看法和应对策略。本研究旨在探讨NMOSD患者的复发风险感知特点及应对策略。
方法：我们采用了定性研究的现象学方法。面对面,我们对15例NMOSD患者进行了半结构化深度访谈.然后使用Colaizzi七步分析对访谈数据进行分析。
结果：分析揭示了五大主题。第一个主题是“对复发可能性的感知”，其中包括主观上低估了复发的可能性，并从低估转向高估；第二个主题是“复发警告标志感知”；第三个主题是“对复发触发因素的感知”，其中包括了解复发触发因素，关于复发触发因素的潜在误解，没有可识别的复发原因；第四个主题是“对复发后果的感知”，包括身体结构和功能的严重损害，突出的心理问题，有限的家庭角色和社会功能，和沉重的经济负担；最后的主题是“复发风险应对策略”，其中包括积极渴望和寻求信息支持，复发风险预防/管理，应对策略的局限性。
结论：这项研究的发现表明，新诊断的患者以及复发的患者在经历多次（两次或更多次）复发之前主观上低估了复发的可能性。相比之下,经历多次复发的患者从最初的低估转变为随后的高估.此外,患者对药物的依从性被认为是一种非常易于控制的复发风险行为.复发的发生与对患者的显著和广泛的不良反应相关。因此,患者渴望与他们的医疗保健提供者就治疗计划和复发管理进行沟通.
方法：我们采用了定性研究的现象学方法。面对面,我们对15例NMOSD患者进行了半结构化深度访谈.然后使用Colaizzi七步分析对访谈数据进行分析。
结果：分析揭示了五大主题。第一个主题是“对复发可能性的感知”，其中包括主观上低估了复发的可能性，并从低估转向高估；第二个主题是“复发警告标志感知”；第三个主题是“对复发触发因素的感知”，其中包括了解复发触发因素，关于复发触发因素的潜在误解，没有可识别的复发原因；第四个主题是“对复发后果的感知”，包括身体结构和功能的严重损害，突出的心理问题，有限的家庭角色和社会功能，和沉重的经济负担；最后的主题是“复发风险应对策略”，其中包括积极渴望和寻求信息支持，复发风险预防/管理，应对策略的局限性。
结论：这项研究的发现表明，新诊断的患者以及复发的患者在经历多次（两次或更多次）复发之前主观上低估了复发的可能性。相比之下,经历多次复发的患者从最初的低估转变为随后的高估.此外,患者对药物的依从性被认为是一种非常易于控制的复发风险行为.复发的发生与对患者的显著和广泛的不良反应相关。因此,患者渴望与他们的医疗保健提供者就治疗计划和复发管理进行沟通.
