Article

Patient-derived historical data are widely employed to make fundamental
management decisions in multiple sclerosis, although the validity of the
information provided is unclear. The objectives of this study were to determine
validity of patient-derived historical data and to describe the utility of a
locally relevant, patient-administered questionnaire designed to ascertain
current disability and other important disease milestones.
A well-described
cohort of 99 patients was identified for whom comparable, detailed, prospective
longitudinal clinician-derived data were available. Patient-derived data were
collected by completion of a standardized questionnaire or telephone interview
for comparison. Reliability analysis for current Expanded Disability Status Scale
(EDSS) demonstrated an intraclass correlation coefficient of 0.79 between
questionnaire and clinician-derived data in 79 patients, with complete agreement
in 75.9%. Intraclass correlation coefficient for year of disease onset, diagnosis
and onset of secondary progression was 0.86, 0.91 and 0.78, respectively. Time to
EDSS >4.0, 6.0 and 8.0 all had an intraclass correlation coefficient of >0.9.
Less robust agreement was observed for current disease course (Kappa coefficient
0.71), initial relapse rate (intraclass correlation coefficient 0.37) and
clinical features at disease onset (Kappa 0.25). We conclude that self-reported
questionnaires can provide reliable current and retrospective data on
time-to-disability milestones with high levels of correlation observed for some
additional elements, supporting the use of selected components of patient-derived
data in clinical practice and for epidemiological studies.

Langue : ANGLAIS

Tiré à part : OUI