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基于网络的生活方式、锻炼和活动干预对进展性多发性硬化症患者的效果:一项单臂可行性研究的结果。

A web-based life-style, exercise and activity intervention for people with progressive multiple sclerosis: Results of a single-arm feasibility study.

机构信息

Centre for Trials Research, Cardiff University, 4th floor Neuadd Meirionnydd, Heath Park, Cardiff, UK.

Centre for Trials Research, Cardiff University, 4th floor Neuadd Meirionnydd, Heath Park, Cardiff, UK.

出版信息

Mult Scler Relat Disord. 2022 Jan;57:103388. doi: 10.1016/j.msard.2021.103388. Epub 2021 Nov 8.

DOI:10.1016/j.msard.2021.103388
PMID:35158478
Abstract

BACKGROUND

People with progressive Multiple Sclerosis often struggle to access appropriate and inclusive support for regular physical activity. The Lifestyle, Exercise and Activity Package (LEAP-MS) intervention, is a co-designed web-based physical activity intervention for people with progressive Multiple Sclerosis (MS). It consists of two key components; (1) web-based physical activity coaching with physiotherapists using self-management support strategies and 2) an interactive web-based platform including a physical activity information suite, an activity selection and planning tool and a participant-physiotherapist messaging system. We aimed to evaluate recruitment, retention and uptake, in a single arm feasibility study.

METHODS

Participants with primary or secondary progressive MS with an Expanded Disability Status Scale score of 6 to 8 were recruited. Assessments included the MS Impact Scale (MSIS-29) and measures of participation at baseline, three and six months. All participants received the intervention which consisted of up to six web-based physiotherapy- led physical activity coaching sessions alongside access to web-based education and activity suites. Recruitment, retention and uptake data were summarised. Pre-defined progression criteria were used to guide feasibility assessment. Clinical outcome data were analysed descriptively.

RESULTS

Fifty-eight percent (21/36) of those submitting expressions of interest were recruited; 76% completed follow-up. Pre-specified progression criteria for retention were met but recruitment did not meet progression criteria. The intervention achieved set fidelity criteria. At three months, 12 participants (75%) reported improvements in routine activities after the intervention. MSIS-29 physical scores improved by an average of eight points (95% CI -12.6 to -3.3). Improvements were also seen in MSIS-29 psychological scores and fatigue. Some improvements were maintained at six months.

CONCLUSIONS

The LEAP-MS intervention is feasible and associated with improvements in MSIS-29 scores. The intervention facilitated partnership working between physiotherapists and people with progressive MS. Users developed valuable skills in supported self-management by focussing on enhancing physical activity to support overall wellbeing. This work has laid the foundations for a large-scale evaluation of a co-designed intervention with potential for far reaching impact on the lives of people with progressive MS.

摘要

背景

进展性多发性硬化症患者经常难以获得适当和包容的常规身体活动支持。生活方式、运动和活动包(LEAP-MS)干预措施是一种针对进展性多发性硬化症(MS)患者的合作设计的基于网络的身体活动干预措施。它由两个关键组成部分组成;(1)使用自我管理支持策略的物理治疗师的基于网络的身体活动指导,以及 2)一个互动的基于网络的平台,包括身体活动信息套件、活动选择和规划工具以及参与者-物理治疗师消息系统。我们旨在通过一项单臂可行性研究评估招募、保留和参与率。

方法

招募原发性或继发性进展性 MS 患者,扩展残疾状况量表评分 6 至 8 分。评估包括多发性硬化症影响量表(MSIS-29)和基线、三个月和六个月时的参与度测量。所有参与者都接受了干预,包括多达六次基于网络的物理治疗师主导的身体活动指导,以及访问基于网络的教育和活动套件。总结了招募、保留和参与率数据。使用预定义的进展标准来指导可行性评估。临床结果数据进行描述性分析。

结果

有 58%(21/36)表达兴趣的人被招募;76%完成了随访。保留的预定进展标准得到满足,但招募未达到进展标准。干预措施达到了设定的保真度标准。在三个月时,12 名参与者(75%)报告在干预后日常活动有所改善。MSIS-29 身体评分平均提高了 8 分(95%CI-12.6 至-3.3)。MSIS-29 心理评分和疲劳也有所改善。一些改善在六个月时得以维持。

结论

LEAP-MS 干预措施是可行的,与 MSIS-29 评分的改善有关。该干预措施促进了物理治疗师和进展性多发性硬化症患者之间的合作。用户通过专注于增强身体活动以支持整体健康,在支持性自我管理方面发展了宝贵的技能。这项工作为合作设计的干预措施的大规模评估奠定了基础,该干预措施有可能对进展性多发性硬化症患者的生活产生深远影响。

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