The interactive web-based program MSmonitor for self-management and multidisciplinary care in multiple sclerosis: concept, content, and pilot results

Abstract

BackgroundThere 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.MethodsThe 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.ResultsAfter 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).ConclusionMSmonitor 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.

Improving fatigue in multiple sclerosis by smartphone-supported energy management: The MS TeleCoach feasibility study

“…This suggests that the mere fact of measuring physical activity levels and monitoring fatigue may have a positive effect on perceived fatigue. A similar effect was seen in a study where the use of activity diaries was shown to be a contributor to the selfmanagement of fatigue (Jongen et al, 2015b), and in studies of selfmanagement programs using an interactive web-based program (Jongen et al, 2015a).…”

Impact of Shared Decision Making on Disease-Modifying Drug Adherence in Multiple Sclerosis

“…1 Interactive, Web-based, patient-focused programs may enhance self-management and allow for an integrated interdisciplinary approach. Examples include MSmonitor, a program for self-monitoring, selfmanagement, and integrated, multidisciplinary care in MS, 56 and MSInvigor8, a cognitive behavioral therapy self-management program for MS fatigue. 57,58 MSmonitor comprises six validated questionnaires, two inventories (medication and adherence), two diaries, and two functionalities (e-consult and personal e-logbook).…”

“…57,58 MSmonitor comprises six validated questionnaires, two inventories (medication and adherence), two diaries, and two functionalities (e-consult and personal e-logbook). 56 A pilot study using this program suggested that repeated use of the short Modified Fatigue Impact Scale-5-item version and the 8-item Leeds Multiple Sclerosis Quality of Life questionnaire was associated with an increase in health-related quality of life. 56 MSInvigor8 consists of eight tailored, interactive sessions, 57 and a pilot randomized trial demonstrated that addition of e-mail-based support (MSInvigor8-Plus) significantly reduced fatigue severity.…”

Ehealth Solutions in Multiple Sclerosis: Use of Digital and Remote Communication Technologies

“…A separate tool, MSmonitor, is an interactive, Internet-based program for the self-monitoring, self-management, and integrated multidisciplinary care of patients with MS [37]. The original content comprised: (1) questionnaires to assess the impact of MS and related quality of life, fatigue, anxiety, and depression; (2) inventories to capture medication, adherence, and urological symptom data; (3) diaries to record activity, rest periods, micturition, and fluid intake; (4) an "e-consult" functionality to enable patients to contact their physician; and (5) an "e-logbook" [37].…”

“…The original content comprised: (1) questionnaires to assess the impact of MS and related quality of life, fatigue, anxiety, and depression; (2) inventories to capture medication, adherence, and urological symptom data; (3) diaries to record activity, rest periods, micturition, and fluid intake; (4) an "e-consult" functionality to enable patients to contact their physician; and (5) an "e-logbook" [37]. Pilot data suggested that repeated use of MSmonitor led to an increase in health-related quality of life and helped patients to self-manage fatigue [37]. In a subsequent survey of 55 patients with MS, MSmonitor has been shown to improve patients' insights into symptoms and disabilities, and improve the quality of nursing care they received [38].…”