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驾驭发作性睡病:探索 1 型发作性睡病患者的应对策略及其与生活质量的关系。

Navigating narcolepsy: exploring coping strategies and their association with quality of life in patients with narcolepsy type 1.

机构信息

Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy.

Department of Medicine and Surgery, University of Parma, Parma, Italy.

出版信息

Sci Rep. 2024 May 23;14(1):11837. doi: 10.1038/s41598-024-62698-5.

Abstract

Narcolepsy type 1 (NT1) is a chronic neurological disorder characterized by symptoms such as excessive daytime sleepiness, sudden sleep episodes, disrupted nocturnal sleep, cataplexy, sleep paralysis, and hypnagogic hallucinations, which significantly impact the overall well-being and quality of life of individuals. While psychological factors have gained attention, there is limited research on the coping strategies employed by patients with NT1 and their association with quality of life. This study aimed to compare coping strategies in patients with NT1 and controls, as well as assess the relationship between coping strategies and quality of life in patients with NT1. A total of 122 individuals diagnosed with NT1 and 138 controls were enrolled in this cross-sectional study. Participants completed questionnaires assessing coping strategies and health-related quality of life. A Mann-Whitney U test was conducted to compare the use of different coping strategies by patients with NT1 and controls. Spearman's rho correlation was performed to examine the association between coping strategies and quality of life in the NT1 group. Results showed that patients with NT1 exhibited differences in the use of coping strategies compared to controls. They reported lower use of active coping, planning, instrumental, and emotional social support, and higher use of behavioral and mental disengagement. Denial and behavioral disengagement were significantly and negatively associated with quality of life. Identifying coping strategies and their association with quality of life may aid in the development of tailored interventions aimed at improving the adoption of effective coping strategies and reducing the use of maladaptive coping strategies.

摘要

发作性睡病 1 型(NT1)是一种慢性神经系统疾病,其特征是白天过度嗜睡、突发性睡眠发作、夜间睡眠紊乱、猝倒、睡眠瘫痪和催眠幻觉等症状,这些症状严重影响个体的整体健康和生活质量。尽管心理因素已引起关注,但对于 NT1 患者所采用的应对策略及其与生活质量的关系,研究仍十分有限。本研究旨在比较 NT1 患者和对照组的应对策略,并评估 NT1 患者应对策略与生活质量之间的关系。本横断面研究共纳入了 122 名确诊为 NT1 的患者和 138 名对照者。参与者完成了评估应对策略和健康相关生活质量的问卷。采用 Mann-Whitney U 检验比较 NT1 患者和对照组使用不同应对策略的情况。采用 Spearman rho 相关分析检验 NT1 组中应对策略与生活质量之间的关联。结果显示,与对照组相比,NT1 患者在应对策略的使用上存在差异。他们报告较少使用积极应对、计划、工具性和情绪性社会支持,更多地使用行为和心理脱离。否认和行为脱离与生活质量显著负相关。确定应对策略及其与生活质量的关系,可能有助于制定针对特定人群的干预措施,旨在改善有效应对策略的采用并减少不良应对策略的使用。

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