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多发性硬化症患者对数字自我追踪的感知有用性。

Perceived usefulness of digital self-tracking among people with multiple sclerosis.

作者信息

Skovgaard Lasse, Steenberg Josephine Lyngh, Lynning Marie

机构信息

The Danish Multiple Sclerosis Society, Valby, Denmark.

出版信息

Digit Health. 2024 Aug 5;10:20552076241264389. doi: 10.1177/20552076241264389. eCollection 2024 Jan-Dec.

Abstract

BACKGROUND AND AIM

Self-care technologies may support patients with multiple sclerosis (MS) in their everyday disease management by enabling self-monitoring of various health indicators, such as symptom levels and physical activity levels. The aim of this study was to assess the usefulness of tracking self-selected MS- and health-related measures via a digital self-tracking tool for people with MS (PwMS) over a period of six weeks.

METHODS

An initial development phase was followed by a six-week testing phase with 58 test participants. The evaluation phase followed a sequential, exploratory mixed-methods design, consisting of 14 interviews with test participants during the testing phase, followed by a survey of all participants after the testing phase to confirm and elaborate on the interview findings. The interview data were analyzed through a five-step thematic analysis, and the survey data were analyzed descriptively.

RESULTS

The results of the mixed-methods study can be summarized in the following findings: (1) Use of the self-tracking tool assisted users in clarifying patterns regarding their symptoms, physical activity, sleep quality and emotional well-being. (2) Tracking physical activity and, to some extent, sleep had a motivational effect on participants in relation to increasing activity and/or changing habits. (3) Data quality/accuracy constitutes an important criterion for considering the self-tracking tool relevant. (4) The self-tracking tool may support dialogue between patients and healthcare professionals, and/or it may potentially play a role in peer-to-peer support.

CONCLUSION

The results of the present study indicate that the self-tracking of symptoms, sleep, physical activity and other measures may contribute positively to everyday self-management among PwMS. Professional support in interpreting and acting upon the data should be considered.

摘要

背景与目的

自我护理技术可通过实现对各种健康指标(如症状水平和身体活动水平)的自我监测,来支持多发性硬化症(MS)患者进行日常疾病管理。本研究的目的是评估通过数字自我跟踪工具,让MS患者(PwMS)在六周时间内跟踪自我选择的与MS及健康相关的指标的有用性。

方法

在初始开发阶段之后,对58名测试参与者进行了为期六周的测试阶段。评估阶段采用了顺序探索性混合方法设计,包括在测试阶段对14名测试参与者进行访谈,然后在测试阶段结束后对所有参与者进行调查,以确认并详细阐述访谈结果。访谈数据通过五步主题分析进行分析,调查数据进行描述性分析。

结果

混合方法研究的结果可总结为以下发现:(1)使用自我跟踪工具帮助用户理清其症状、身体活动、睡眠质量和情绪健康方面的模式。(2)跟踪身体活动以及在一定程度上跟踪睡眠,对参与者增加活动量和/或改变习惯具有激励作用。(3)数据质量/准确性是考虑自我跟踪工具相关性的重要标准。(4)自我跟踪工具可能支持患者与医护人员之间的对话,和/或可能在同伴支持中发挥作用。

结论

本研究结果表明,对症状、睡眠、身体活动和其他指标进行自我跟踪可能对PwMS的日常自我管理有积极贡献。应考虑在解读数据并据此采取行动方面提供专业支持。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c75/11301736/c8c3ded6915a/10.1177_20552076241264389-fig1.jpg

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