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

Abstract

BackgroundThe 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.ObjectiveInvestigate in relapsing-remitting (RR) MS patients the adherence to monthly online self-assessments after the start of disease modifying treatment.MethodsObservational 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).ResultsSixty-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 more interval adherent than women (47.5% vs 20.0%; P = 0.001).ConclusionThe observation that three out of four (75.5%) RRMS patients completed two short questionnaires at all monthly time points during 1 year after the start of disease modifying treatment suggests that intensive online monitoring in this patient group is feasible. As only one in five (19.6%) patients adhered to the time intervals between self-assessments, measures are needed that improve the timely completion of questionnaires.

Adherence to Web-Based Self-Assessments in Long-Term Direct-to-Patient Research: Two-Year Study of Multiple Sclerosis Patients

“…Moreover, in the glatiramer acetate study, patients were included by their treating neurologists at the time of treatment initiation, whereas in this study, patients enrolled themselves at an arbitrary point in time. Nonetheless, the median monthly interassessment intervals (30-32 days) and the median baseline-M24 interval ([2x365]+19 days) in this study compare favorably with the median interassessment intervals (32-34 days) and the median baseline-M12 interval (365+52 days) in our previous study [ 12 ].…”

“…In this study, 64.0% of the patients had completed all monthly MA questionnaires 1 year after baseline. In a previous 1-year study in MS patients who started daily glatiramer acetate treatment, we found that 75.5% of the patients completed all monthly short questionnaires on fatigue (five items) and HRQoL (eight items) [ 12 ]. This higher percentage could relate to the content of the questionnaires: fatigue is a frequent and often debilitating symptom in MS that was expected to improve during glatiramer acetate treatment, whereas the documentation of medication and missed DMD doses may be less appealing to patients.…”

“…In a previous patient-centered Web-based study involving RRMS patients who were included by their neurologists, we investigated the adherence to monthly Web-based self-assessments after the start of DMD treatment [ 12 ]. It was found that 75.5% of the patients completed two short questionnaires at all monthly time points over the course of 1 year, although only 1 in 5 patients adhered to the monthly intervals between consecutive self-assessments [ 12 ].…”

“…In a previous patient-centered Web-based study involving RRMS patients who were included by their neurologists, we investigated the adherence to monthly Web-based self-assessments after the start of DMD treatment [ 12 ]. It was found that 75.5% of the patients completed two short questionnaires at all monthly time points over the course of 1 year, although only 1 in 5 patients adhered to the monthly intervals between consecutive self-assessments [ 12 ]. To gain information about the long-term adherence of MS patients to low-frequency completions of long questionnaires versus high-frequency completions of short questionnaires in a direct-to-patient research setting, this study analyzed the 2-year adherence data in the Dutch MS study [ 9 ].…”

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

“…More frequent assessments and the use of patient-reported outcomes (PROs) could have an added value. 6 , 7 …”