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

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 more interval adherent than women (47.5% vs 20.0%; P = 0.001).

Conclusion: The 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.

Keywords: LMSQoL; MFIS-5; effectiveness; fatigue; glatiramer acetate; health-related quality of life.

Figure 1

Screenshot of the five items of the MFIS-5 questionnaire. Copyright © 2012, Curavista bv, Geertruidenberg, Netherlands. Reprinted with permission. Notes: Questions: (1) Due to my fatigue I have been less alert. (2) Due to my fatigue I have been limited in my ability to do things away from home. (3) Due to my fatigue I have had trouble maintaining physical efforts for long periods. (4) Due to my fatigue I have been less able to complete tasks that require physical effort. (5) Due to my fatigue I have had trouble concentrating. Possible answers: never, seldom, sometimes, often, almost always. Abbreviation: MFIS-5, Modified Fatigue Impact Scale 5-item version.

Figure 2

Screenshot of graphic feedback of changes in fitness score (black line) and quality of life score (red line). Copyright © 2012, Curavista bv, Geertruidenberg, Netherlands. Reprinted with permission.

Figure 3

Numbers and percentages of patients who completed the MFIS-5 and LMSQoL questionnaires at the various time points from T0 to T12. Abbreviations: LMSQoL, Leeds Multiple Sclerosis Quality of Life; MFIS-5, Modified Fatigue Impact Scale 5-item version.