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Information on how to request permission may be found at: http://www.dovepress.com/permissions.php Patient Preference and Adherence 2015:9 1741–1750 Patient Preference and Adherence Dovepress submit your manuscript | www.dovepress.com Dovepress 1741 OriginAl reseArch open access to scientific and medical research Open Access Full Text Article http://dx.doi.org/10.2147/PPA.S93783 The interactive web-based program Msmonitor for self-management and multidisciplinary care in multiple sclerosis: concept, content, and pilot results Peter Joseph Jongen, 1,2 ludovicus g sinni ge, 3 Björn M van geel, 4 Freek Verheul, 5 Wim l Verhagen, 6 ruud A van der Kruijk, 7 reinoud haverkamp, 8 hans M schrijver, 9 J coby Baart, 10 leo h Visser, 11 edo P Arnoldus, 12 h Jacobus gilhuis, 13 Paul Pop, 14 Monique Booy, 15 Wim lemmens, 16 rogier Donders, 16 Anton Kool, 17 esther van noort 17 1 Department of community and Occupational Medicine, University Medical center groningen, University groningen, groningen, 2 Ms4 research institute, nijmegen, 3 Multiple sclerosis centre leeuwarden, Medi cal centre leeuwarden, leeuwarden, 4 Department of neurology, Medical centre Alkmaar, Alkmaar, 5 Department of neurology, groene hart hospital, gouda, 6 Department of neurology, canisius Wilhelmina hospital, nijmegen, 7 Department of neurology, slingeland hospital, Doetinchem, 8 Department of neurology, Zuwe hofpoort hospital, Woerden, 9 Multiple sclerosis centre, Westfries gasthuis, hoorn, 10 Department of neurology, Ziekenhuisgroep Twente, Almelo-hengelo, 11 Multiple sclerosis centre Midden Brabant, st eli sabeth hospital, 12 Multiple sclerosis centre Midden Brabant, Tweesteden hospital, Tilburg, 13 Department of neurology, reinier de graaf gasthuis, Delft, 14 Department of neurology, Viecuri Medical centre, Venlo-Venray, 15 Multiple sclerosis centre, Amphia hospital, Breda, 16 Department for health evidence, radboud University nijmegen Medical centre, nijmegen, 17 curavista bv, geertruidenberg, the netherlands 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 question- naires 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 inte- grated 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. Keywords: multiple sclerosis, self-management, web-based, care, multidisciplinary, patient- reported outcome Introduction Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease of the central nervous system. In approximately 80% of the persons with multiple sclerosis (PwMS) the first clinical phase is characterized by recurrent episodes of new or worsening symptoms (relapses), which are typically followed by complete or partial remissions: relapsing remitting MS (RRMS). Anti-inflammatory immune-modulating or immune-suppressing drugs may substantially reduce the frequency and severity of relapses, and thus modify the correspondence: Peter Joseph Jongen Department of community and Occupational Medicine, University Medical center groningen, University groningen, Antonius Deusinglaan 1, 9713 AV groningen, the netherlands email p.j.h.jongen@rug.nl Patient Preference and Adherence downloaded from https://www.dovepress.com/ by 54.162.69.248 on 19-Jun-2020 For personal use only. 1 / 1