1. Adherence to monthly online self-assessments for short-term monitoring: a 1-year study in relapsing-remitting multiple sclerosis patients after start of disease modifying treatment
- Author
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Jongen,Peter Joseph, Sanders,Evert, Zwanikken,Cees, Koeman,Jan, Visser,Leo H, Koopmans,Petra, Lehnick,Dirk, Jongen,Peter Joseph, Sanders,Evert, Zwanikken,Cees, Koeman,Jan, Visser,Leo H, Koopmans,Petra, and Lehnick,Dirk
- Abstract
Peter Joseph Jongen,1 Evert Sanders,2 Cees Zwanikken,3 Jan Koeman,4 Leo H Visser,5 Petra Koopmans,6 Dirk Lehnick,7 OPTIVIT study group 1MS4 Research Institute, Nijmegen, 2Amphia Ziekenhuis, Breda, 3Maxima Medisch Centrum, Eindhoven, 4Admiraal de Ruyter Ziekenhuis, Vlissingen, 5St Elisabeth Ziekenhuis, Tilburg, 6Signidat, Groningen, The Netherlands; 7Nuvisan GmbH, Neu-Ulm, Germany Background: The participation of neurologists and patients in studies on the effectiveness and safety of newly authorized drugs in multiple sclerosis (MS) is insufficient. Monthly online self-assessments using patient-reported outcomes may help in short-term monitoring of neurological changes and side effects. Objective: Investigate in relapsing-remitting (RR) MS patients the adherence to monthly online self-assessments after the start of disease modifying treatment. Methods: Observational study in 39 neurological departments in The Netherlands. Patients starting glatiramer acetate treatment were instructed to complete online the Modified Fatigue Impact Scale 5-item version and the 8-item Leeds Multiple Sclerosis Quality of Life scale every month during 1 year (T0 toT12). Results: Sixty-three investigators included 163 analyzable patients. At T3, 148 (90.8%) patients had completed all questionnaires; at T6, 142 (87.1%); at T9, 133 (81.6%); and at T12, 123 (75.5%). Eight (4.9%) patients did not complete any questionnaire. Median values for inter-assessment intervals ranged from 32 to 34 days (first quartile [Q1] 30 days, third quartile [Q3] 41 days), and the final assessment was at 417 days (median: Q1 385 days, Q3 480 days). Forty-three (26.3%) patients completed the questionnaires at all time points (completion adherent) with their final assessment within 30 days after the scheduled T12 (interval adherent). Eighty (49.1%) patients were completion adherent, but not interval adherent. Forty (24.5%) patients were not completion adherent, as they discontinued assessments prematurely. Men were
- Published
- 2013