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首页> 外文期刊>Patient Preference and Adherence >The interactive web-based program MSmonitor for self-management and multidisciplinary care in multiple sclerosis: concept, content, and pilot results
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The interactive web-based program MSmonitor for self-management and multidisciplinary care in multiple sclerosis: concept, content, and pilot results

机译：基于交互式网络程序MSmonitor，用于多发性硬化症的自我管理和多学科护理：概念，内容和试验结果

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Background: There is a growing need to offer persons with multiple sclerosis (PwMS) possibilities for self-management and to integrate multidisciplinary health data. In 2009–2014 we developed a patient-reported outcome based, interactive, web-based program (MSmonitor) for (self-)monitoring, self-management and integrated, multidisciplinary care in MS. Methods: The notions underlying the MSmonitor concept and the program’s elements are described. We analyze MSmonitor’s role in the self-management of fatigue by retrospective comparison of fatigue and health-related quality of life (HRQoL) before and after usage of specific elements of MSmonitor, and by a correlative analysis between frequency of usage and fatigue change. Results: After a step-wise development the program comprises six validated questionnaires: Multiple Sclerosis Impact Profile, Modified Fatigue Impact Scale-5 items (MFIS-5), Hospital Anxiety and Depression Scale, Multiple Sclerosis Quality of Life-54 items, and the 8-item Leeds Multiple Sclerosis Quality of Life (LMSQoL) questionnaires; two inventories: Medication and Adherence Inventory, Miction Inventory; two diaries: Activities Diary, Miction Diary; and two functionalities: e-consult and personal e-logbook. The program is now used in 17 hospitals by 581 PwMS and their neurologists, MS nurses, physical therapists, rehabilitative doctors, continence nurses, and family doctors. Those PwMS (N=105) who used the LMSQoL and MFIS-5 questionnaires at least twice in a period of up to 6 months, showed improved HRQoL ( P <0.026). In the subgroup (N=56) who had also used the Activities Diary twice or more, the frequency of diary usage correlated modestly with the degree of fatigue improvement ( r =0.292; P =0.028). Conclusion: MSmonitor is an interactive web-based program for self-management and integrated care in PwMS. Pilot data suggest that the repeated use of the short MFIS-5 and LMSQoL questionnaires is associated with an increase in HRQoL, and that a repeated use of the Activities Diary might contribute to the self-management of fatigue.
机译：背景：越来越需要为患有多发性硬化症（PwMS）的人进行自我管理并整合多学科健康数据。在2009-2014年，我们开发了一个基于患者报告的基于结果的，基于Web的交互式程序（MSmonitor），用于MS中的（自我）监视，自我管理和综合，多学科护理。方法：描述了MSmonitor概念和程序元素的基本概念。我们通过回顾性比较使用MSmonitor特定元素前后的疲劳和与健康相关的生活质量（HRQoL），并通过使用频率与疲劳变化之间的相关分析，分析MSmonitor在自我管理中的作用。结果：经过逐步开发，该计划包括六份经过验证的问卷：多发性硬化症影响概况，改良疲劳影响量表5项（MFIS-5），医院焦虑和抑郁量表，多发性硬化症生活质量54项以及利兹8项多发性硬化症生活质量（LMSQoL）问卷;两个清单：药物和依从性清单，排行榜清单;两本日记：《活动日记》，《写日记》;和两个功能：电子咨询和个人电子日志。现在，该程序已在581家PwMS的17家医院中使用，他们的神经科医生，MS护士，理疗师，康复医生，节制护士和家庭医生也使用了该程序。在长达6个月的时间内至少两次使用LMSQoL和MFIS-5问卷的PwMS（N = 105）显示出HRQoL的改善（P <0.026）。在也曾两次或多次使用活动日记的亚组（N = 56）中，日记的使用频率与疲劳改善程度有一定的相关性（r = 0.292; P = 0.028）。结论：MSmonitor是一个基于Web的交互式程序，用于PwMS中的自我管理和集成护理。试点数据表明，重复使用简短的MFIS-5和LMSQoL问卷与HRQoL的增加有关，并且重复使用“活动日记”可能有助于疲劳的自我管理。

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