Jongen Peter Joseph, Sinnige Ludovicus G, van Geel Björn M, Verheul Freek, Verhagen Wim I, van der Kruijk Ruud A, Haverkamp Reinoud, Schrijver Hans M, Baart J Coby, Visser Leo H, Arnoldus Edo P, Gilhuis H Jacobus, Pop Paul, Booy Monique, Lemmens Wim, Donders Rogier, Kool Anton, van Noort Esther
Department of Community and Occupational Medicine, University Medical Center Groningen, University Groningen, Groningen, the Netherlands ; MS4 Research Institute, Nijmegen, the Netherlands.
Multiple Sclerosis Centre Leeuwarden, Medical Centre Leeuwarden, Leeuwarden, the Netherlands.
Patient Prefer Adherence. 2015 Dec 11;9:1741-50. doi: 10.2147/PPA.S93783. eCollection 2015.
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.
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.
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).
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.
为多发性硬化症患者（PwMS）提供自我管理的机会并整合多学科健康数据的需求日益增长。在2009年至2014年期间，我们开发了一个基于患者报告结局、交互式、基于网络的程序（MSmonitor），用于多发性硬化症的（自我）监测、自我管理以及综合多学科护理。
描述了MSmonitor概念背后的理念以及该程序的要素。我们通过回顾性比较使用MSmonitor特定要素前后的疲劳和健康相关生活质量（HRQoL），以及通过使用频率与疲劳变化之间的相关性分析，来分析MSmonitor在疲劳自我管理中的作用。
经过逐步开发，该程序包括六个经过验证的问卷：多发性硬化症影响量表、改良疲劳影响量表 - 5项（MFIS - 5）、医院焦虑抑郁量表、多发性硬化症生活质量 - 54项问卷以及8项利兹多发性硬化症生活质量（LMSQoL）问卷；两个清单：药物与依从性清单、排尿清单；两个日记：活动日记、排尿日记；以及两个功能：电子咨询和个人电子日志。该程序目前在17家医院中被581名PwMS及其神经科医生、多发性硬化症护士、物理治疗师、康复医生、尿失禁护士和家庭医生使用。那些在长达6个月的时间内至少使用LMSQoL和MFIS - 5问卷两次的PwMS（N = 105），其HRQoL有所改善（P < 0.026）。在也使用活动日记两次或更多次的亚组（N = 56）中，日记使用频率与疲劳改善程度呈适度相关（r = 0.292；P = 0.028）。
MSmonitor是一个基于网络的交互式程序，用于PwMS的自我管理和综合护理。初步数据表明，重复使用简短的MFIS - 5和LMSQoL问卷与HRQoL的提高相关，并且重复使用活动日记可能有助于疲劳的自我管理。
