Elena Hristodorova*, Department of Health Services Research, Maastricht Univeristy, Maastricht, Netherlands Peter Joseph Jongen, MS4 Research Institute, Nijmegen, Netherlands Mikael Hiligsmann, Department of Health Services Research, Maastricht University, Maastricht, Netherlands Anneke van der Zande, Nationaal MS Fonds, Maassluis, Netherlands Anton Kool, Curavista bv, Geertruidenberg, Netherlands Esther van Noort, Curavista bv, Geertruidenberg, Netherlands Silvia Evers, Department of Health Services Research, Maastricht University, Maastricht, Netherlands MSmonitor Working Group, MS4 Research Institute, Nijmegen, Netherlands Track: Research Presentation Topic: Web 2.0 approaches for clinical practice, clinical research, quality monitoring Presentation Type: Poster presentation Submission Type: Single Presentation Last modified: 2014-10-08

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Background: Web-based programs for repeated self-assessments are increasingly being used by persons with chronic diseases, both for care and research purposes. The programs may include, among others, questionnaires and inventories. A major issue in the structural application of online self-asessment tools in chronic diseases are problems with long-term adherence. Persons may use (components of) a program selectively, intermittently, periodically or discontinue the usage altogether. The selective or intermittent use is comparable to missed doses in pharmaco-adherence, whereas temporary and persistent discontuation are thought to match relative and absolute drug non-persistence. It is insufficiently known to what degree the various modes of non-adherence interfere with the effective long-term use of online self-assessment programs, and which patient- and disease characteristics may play a role. More knowledge and insight is needed to improve long-term adherence.

Objective: To assess 1) the long-term adherence to a web-based self-assessment program, in terms of selective and intermittent use, and temporary and persistent discontinuation, and 2) the associations between patient- and disease characteristics and adherence, in persons with multiple sclerosis (PwMS) in the Netherlands.

Methods: Study population: PwMS participating in the MSmonitor project (Care Group), and PwMS participating in the Dutch MS Study (Research Group). Both online programs include the Multiple Sclerosis Impact Profile (MSIP), the Multiple Sclerosis Quality of Life-54 Items (MSQoL-54), Modified Fatigue Impact Scale-5 Item (MFIS-5), and the Leeds Multiple Sclerosis Quality of Life (LMSQoL) questionnaires. The MSIP and MSQoL-54 are scheduled every 6 months, the MFIS-5 and LMSQoL every month. MSmonitor is a care project to improve self-management and multidisciplinary care. The Dutch MS Study assesses long-term changes in disease impact, perceived impact and health-related quality of life. MSmonitor PwMS were asked by their neurologist or nurse to participate in the project (www.msmonitor.nl), whereas Dutch MS Study participants self-registered without intervention directly via the study website www.msstudie.nl.

Results: From 2009 - March 2014 575 PwMS were registered in the Care Group, 71 (12.3%) of which did not start participation. In the Study Group 386 PwMS self-registered between 2011 and March 2014, and 28 (7.3%) did not start participation. Numbers of completed MSIP, MSQoL-54, MFIS-5, and LMSQoL questionaires in the Care Group 373; 269; 1,851; 1,823; and in the Research Group 1,391; 1,356; 3,832; and 3,832. Detailed comparative analyses of adherence and patient- and disease characteristics are in progress. The complete results will be presented at the congress.

Conclusion: First results suggest that the initial adherence (start of participation) to web-based self-assessments among self-registered PwMS in an online study is higher than in PwMS registered by their neurologist or nurse in a care setting.