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护士主导的在线患者支持项目对多发性硬化症患者疲劳、睡眠及生活质量的影响:一项准实验研究

Effect of a nurse-led online patient support program on fatigue, sleep and quality of life in patients with multiple sclerosis: a quasi-experimental study.

作者信息

Yalçın Gizem Yağmur, Tulek Zeliha, Kürtüncü Murat

机构信息

Institute of Graduate Studies, Istanbul University-Cerrahpasa, Istanbul, Türkiye.

Department of Nursing, Faculty of Health Sciences, Istinye University, Istanbul, Türkiye.

出版信息

BMC Neurol. 2025 May 31;25(1):238. doi: 10.1186/s12883-025-04248-8.

Abstract

BACKGROUND

Multiple sclerosis (MS) is becoming more prevalent. Physical impairments and sleep issues, particularly fatigue, diminish these patients' quality of life. One of the most successful and long-lasting strategies for managing symptoms is patient education. The aim of this study was to evaluate effect of a nurse-led online support program on fatigue, sleep, and quality of life in patients with multiple sclerosis (PwMS).

METHODS

This quasi-experimental study was conducted in the MS outpatient clinic of a university hospital in Istanbul. Patients participated in a five-week nurse-led online support program and were assessed using the Fatigue Severity Scale (FSS), Pittsburgh Sleep Quality Index (PSQI), and EQ-5D Quality of Life Scale before, after, and at 3 and 6 months. Patients' step counts were also recorded.

RESULTS

Thirty patients who completed the program were included in the study. Compared to baseline, FSS scores and number of steps improved (p = 0.008, p = 0.008). PSQI scores also improved (p = 0.026). Although there was no difference in EQ-5D symptom scores, the EQ-5D visual analogue scale scores tended to improve (p = 0.085).

CONCLUSIONS

A nurse-led online support program may be a feasible and resource-efficient approach to managing fatigue and sleep disturbances in PwMS, especially in settings with limited access to care. Larger controlled studies are needed to confirm these findings.

TRIAL REGISTRATION

This study was registered on ClinicalTrials.gov on August 24, 2023 (NCT06166043).

摘要

背景

多发性硬化症(MS)的发病率正日益上升。身体损伤和睡眠问题,尤其是疲劳,会降低这些患者的生活质量。患者教育是管理症状最成功且持久的策略之一。本研究的目的是评估由护士主导的在线支持项目对多发性硬化症患者(PwMS)的疲劳、睡眠和生活质量的影响。

方法

这项准实验研究在伊斯坦布尔一家大学医院的MS门诊进行。患者参加了一个为期五周的由护士主导的在线支持项目,并在项目开始前、结束后以及3个月和6个月时使用疲劳严重程度量表(FSS)、匹兹堡睡眠质量指数(PSQI)和EQ-5D生活质量量表进行评估。还记录了患者的步数。

结果

30名完成该项目的患者被纳入研究。与基线相比,FSS评分和步数有所改善(p = 0.008,p = 0.008)。PSQI评分也有所改善(p = 0.026)。虽然EQ-5D症状评分没有差异,但EQ-5D视觉模拟量表评分有改善趋势(p = 0.085)。

结论

由护士主导的在线支持项目可能是一种可行且资源高效的方法,用于管理PwMS患者的疲劳和睡眠障碍,尤其是在医疗服务可及性有限的环境中。需要更大规模的对照研究来证实这些发现。

试验注册

本研究于2023年8月24日在ClinicalTrials.gov上注册(NCT06166043)。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/da85/12125926/3767b8a7e176/12883_2025_4248_Fig1_HTML.jpg

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