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通过远程护理实施的以患者为中心的赋权计划对多发性硬化症患者自我管理的影响:一项双盲随机临床试验。

The effect of patient-centered empowerment program through telenursing on self-management in people with multiple sclerosis: a double-blinded randomized clinical trial.

作者信息

Bayat Fateme, Negarandeh Reza, Pashaeypoor Shahzad

机构信息

Department of Community Health and Geriatric Nursing, School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran.

Nursing and Midwifery Care Research Center, Tehran University of Medical Sciences, Tehran, Iran.

出版信息

BMC Neurol. 2025 Apr 2;25(1):138. doi: 10.1186/s12883-025-04148-x.

DOI:10.1186/s12883-025-04148-x
PMID:40175934
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11963350/
Abstract

BACKGROUND

Multiple sclerosis (MS) is a chronic disease that presents individuals with various caregiving challenges, making their empowerment based on their real needs essential. The aim of this study was to determine the impact of a patient-centered empowerment program through telenursing on the self-management of people with multiple sclerosis (PwMS).

METHODS

The present study was a double-blinded, randomized clinical trial conducted on 90 PwMS attending MS Society using a convenience sampling method with random block allocation. The inclusion criteria were a definite diagnosis of MS for at least 6 months, age range of 18 to 60 years, ability to use a telephone and smartphone, no other physical or mental illnesses, and no cognitive or psychological disorders based on self-report and patient records. Additionally, the participants who were not able to continue the intervention due to reasons such as fatigue, unwillingness, or hospitalization could not follow the study. The tools used included a demographic questionnaire and the Multiple Sclerosis Self-Management Scale (Healthcare Provider Relationship and Communication, Treatment Adherence/Barriers, Social/Family Support, MS Knowledge and Information, and Health Maintenance Behavior). The research intervention involved providing an empowerment program through 5 telenursing sessions over 4 weeks, with the number of sessions varying based on each person's needs. Data analysis was performed using SPSS software version 26.

RESULTS

In this study, data from 90 individuals with MS were analyzed. Findings indicated that the majority of the study participants were female (62.2%) and married (55.6%). The results indicated no significant differences in the mean scores of self-management and its relevant subscales, between the two groups before the intervention (P > 0.05). However, after the intervention, the mean scores showed a significant difference in the intervention group compared to the control group in terms of self-management index (91.62 ± 11.14 vs. 88.51 ± 11.27), and subscales of MS Knowledge and Information (15.82 ± 1.28 vs. 14.89 ± 2.4) and Health Maintenance Behavior (15.27 ± 2.87 vs. 14.84 ± 3.37) (P < 0.05). The calculated effect size indicates a medium effect (Cohen's d = 0.56).

CONCLUSION

Empowering PwMS, focusing on their unique needs and delivering it through telenursing, can be an effective method in enhancing their self-management capabilities. Therefore, it is recommended that healthcare providers in chronic diseases prioritize patient empowerment based on individual needs.

CLINICAL TRIAL REGISTRATION

This research was registered (13-09-2021) in the https://irct.behdasht.gov.ir with registration number: IRCT20210824052281N1.

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/13cf/11963350/9f1aa4880b1a/12883_2025_4148_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/13cf/11963350/9f1aa4880b1a/12883_2025_4148_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/13cf/11963350/9f1aa4880b1a/12883_2025_4148_Fig1_HTML.jpg
摘要

背景

多发性硬化症(MS)是一种慢性疾病,给患者带来了各种护理挑战,因此基于患者实际需求增强其能力至关重要。本研究的目的是确定通过远程护理实施的以患者为中心的赋权计划对多发性硬化症患者(PwMS)自我管理的影响。

方法

本研究是一项双盲、随机临床试验,采用便利抽样法和随机区组分配,对90名参加MS协会的PwMS进行研究。纳入标准为确诊MS至少6个月,年龄在18至60岁之间,能够使用电话和智能手机,无其他身体或精神疾病,且根据自我报告和患者记录无认知或心理障碍。此外,因疲劳、不愿意或住院等原因无法继续干预的参与者不能纳入研究。所使用的工具包括一份人口统计学问卷和多发性硬化症自我管理量表(医疗服务提供者关系与沟通、治疗依从性/障碍、社会/家庭支持、MS知识与信息以及健康维护行为)。研究干预包括在4周内通过5次远程护理课程提供赋权计划,课程次数根据每个人的需求而有所不同。使用SPSS 26版软件进行数据分析。

结果

本研究分析了90名MS患者的数据。结果表明,大多数研究参与者为女性(62.2%)且已婚(55.6%)。结果显示,干预前两组在自我管理及其相关子量表的平均得分上无显著差异(P>0.05)。然而,干预后,干预组在自我管理指数(91.62±11.14对88.51±11.27)、MS知识与信息子量表(15.82±1.28对14.89±2.4)和健康维护行为子量表(15.27±2.87对14.84±3.37)方面的平均得分与对照组相比有显著差异(P<0.05)。计算得出的效应量表明为中等效应(科恩d=0.56)。

结论

关注PwMS的独特需求并通过远程护理增强其能力,可能是提高他们自我管理能力的有效方法。因此,建议慢性病医疗服务提供者根据个体需求优先考虑患者赋权。

临床试验注册

本研究于(2021年9月13日)在https://irct.behdasht.gov.ir注册,注册号:IRCT2021082405228N1。

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