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

Autor: Jongen PJ; Department of Community and Occupational Medicine, University Medical Center Groningen, University Groningen, Groningen, the Netherlands ; MS4 Research Institute, Nijmegen, the Netherlands., Sinnige LG; Multiple Sclerosis Centre Leeuwarden, Medical Centre Leeuwarden, Leeuwarden, the Netherlands., van Geel BM; Department of Neurology, Medical Centre Alkmaar, Alkmaar, the Netherlands., Verheul F; Department of Neurology, Groene Hart Hospital, Gouda, the Netherlands., Verhagen WI; Department of Neurology, Canisius Wilhelmina Hospital, Nijmegen, the Netherlands., van der Kruijk RA; Department of Neurology, Slingeland Hospital, Doetinchem, the Netherlands., Haverkamp R; Department of Neurology, Zuwe Hofpoort Hospital, Woerden, the Netherlands., Schrijver HM; Multiple Sclerosis Centre, Westfries Gasthuis, Hoorn, the Netherlands., Baart JC; Department of Neurology, Ziekenhuisgroep Twente, Almelo-Hengelo, the Netherlands., Visser LH; Multiple Sclerosis Centre Midden Brabant, St Elisabeth Hospital, Tilburg, the Netherlands., Arnoldus EP; Multiple Sclerosis Centre Midden Brabant, Tweesteden Hospital, Tilburg, the Netherlands., Gilhuis HJ; Department of Neurology, Reinier de Graaf Gasthuis, Delft, the Netherlands., Pop P; Department of Neurology, Viecuri Medical Centre, Venlo-Venray, the Netherlands., Booy M; Multiple Sclerosis Centre, Amphia Hospital, Breda, the Netherlands., Lemmens W; Department for Health Evidence, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands., Donders R; Department for Health Evidence, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands., Kool A; Curavista bv, Geertruidenberg, the Netherlands., van Noort E; Curavista bv, Geertruidenberg, the Netherlands.
Jazyk: angličtina
Zdroj: Patient preference and adherence [Patient Prefer Adherence] 2015 Dec 11; Vol. 9, pp. 1741-50. Date of Electronic Publication: 2015 Dec 11 (Print Publication: 2015).
DOI: 10.2147/PPA.S93783
Abstrakt: 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.
Databáze: MEDLINE
Externí odkaz: