부산대학교 도서관

Peter Joseph Jongen,1,2 Ludovicus G Sinnige,3 Björn M van Geel,4 Freek Verheul,5 Wim I Verhagen,6 Ruud A van der Kruijk,7 Reinoud Haverkamp,8 Hans M Schrijver,9 Jacoba C Baart,10 Leo H Visser,11 Edo P Arnoldus,12 Herman Jacobus Gilhuis,13 Paul Pop,14 Monique Booy,15 Marco Heerings,16 Anton Kool,17 Esther van Noort17 1Department of Community and Occupational Medicine, University Medical Center Groningen, University of Groningen, Groningen, 2MS4 Research Institute, Nijmegen, 3Multiple Sclerosis Centre Leeuwarden, Medical Centre Leeuwarden, Leeuwarden, 4Department of Neurology, Medical Centre Alkmaar, Alkmaar, 5Department of Neurology, Groene Hart Hospital, Gouda, 6Department of Neurology, Canisius Wilhelmina Hospital, Nijmegen, 7Department of Neurology, Slingeland Hospital, Doetinchem, 8Department of Neurology, Zuwe Hofpoort Hospital, Woerden, 9Multiple Sclerosis Centre, Westfries Gasthuis, Hoorn, 10Department of Neurology, Ziekenhuisgroep Twente, Almelo-Hengelo, 11Multiple Sclerosis Centre Midden Brabant, St Elisabeth Hospital, Tilburg, 12Multiple Sclerosis Centre Midden Brabant, Tweesteden Hospital, 13Department of Neurology, Reinier de Graaf Gasthuis, Delft, 14Department of Neurology, Viecuri Medical Centre, Venlo-Venray, 15Multiple Sclerosis Centre, Amphia Hospital, Breda, 16MH Advies en organisatiebureau, Assen, 17Curavista bv, Geertruidenberg, the Netherlands Background: MSmonitor is an interactive web-based program for self-management and integrated, multidisciplinary care in multiple sclerosis.Methods: To assess the utilization and valuation by persons with multiple sclerosis, we held an online survey among those who had used the program for at least 1 year. We evaluated the utilization and meaningfulness of the program’s elements, perceived use of data by neurologists and nurses, and appreciation of care, self-management, and satisfaction.Results: Fifty-five persons completed the questionnaire (estimated response rate 40%). The Multiple Sclerosis Impact Profile (MSIP), Medication and Adherence Inventory, Activities Diary, and electronic consultation (e-consult) were used by 40%, 55%, 47%, and 44% of respondents and were considered meaningful by 83%, 81%, 54%, and 88%, respectively. During out-patient consultations, nurses reportedly used the MSmonitor data three to six times more frequently than neurologists. As to nursing care, more symptoms were dealt with (according to 54% of respondents), symptoms were better discussed (69%), and the overall quality of care had improved (60%) since the use of the program. As to neurological care, these figures were 24%, 31%, and 27%, respectively. In 46% of the respondents, the insight into their symptoms and disabilities had increased since the use of the program; the MSIP, Activities Diary, and e-consult had contributed most to this improvement. The overall satisfaction with the program was 3.5 out of 5, and 73% of the respondents would recommend the program to other persons with multiple sclerosis.Conclusion: A survey among persons with multiple sclerosis using the MSmonitor program showed that the MSIP, Medication and Adherence Inventory, Activities Diary, and e-consult were frequently used and that the MSIP, Medication and Adherence Inventory, and e-consult were appreciated the most. Moreover, the quality of nursing care, but not so neurological care, had improved, which may relate to nurses making more frequent use of the MSmonitor data than neurologists. Keywords: patient-reported outcome, impact, adherence, diary, inventory, e-consult