Jongen et al. 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. Patient Prefer Adherence. 2013 Apr 9;7:293-300.
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.
in relapsing-remitting (RR) MS patients the adherence to monthly online
self-assessments after the start of disease modifying treatment.
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
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).
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
This study shows that you can do questionnaires but you cannot always be bothered to fill them out in rigid fashion. Surveys on the Blog also suffer from survey fatigue.
Labels: Internet based outcomes