The use of multi-domain patient reported outcome measures for detecting clinical disease progression in multiple sclerosis

C. A. A. van ‘t Hullenaar, E. Coerver, N. F. Kalkers, Z. van Kempen, M. Koch, B. M. J. Uitdehaag, J. Killestein, E. M. M. Strijbis*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Objective: Patient reported outcome measures (PROMs) are especially relevant in times of increased interest in telehealth but little is known about their relation to functional disability measures. Methods: We assessed 248 people with MS at baseline and at > = 5-years follow-up. We investigated cross-sectional and longitudinal correlations between changes in the Guy's Neurological disability scale (GNDS), and the physical part of the Multiple Sclerosis Impact Scale (MSIS-29) and the Expanded Disability Status Scale (EDSS), 9-hole peg test (9-HPT) and timed 25-foot walk (T25FW). Results: The strongest cross-sectional correlations were found between the GNDS and EDSS in the complete cohort (r = 0.66, p <.001, n = 248) as well as in progressive patients (r = 0.72, p <.001, n = 35), and the GNDS and T25FW in progressive MS (r = 0.64, p <.001, n = 34). Longitudinal correlations were poor except for changes on the leg domain of the GNDS in relation to T25FW changes in progressive MS (r = 0.68, p <.001, n = 26). In the majority of cases a clinically significant deterioration on the EDSS also resulted in a clinically significant worsening of the GDNS and MSIS. Conclusion: Both PROMs correlate well with physical disability outcomes, and seem suitable for detecting changes in lower limb function in progressive MS. The GNDS has a higher agreement with EDSS progression than the MSIS-physical.

Original languageEnglish
Article number103165
JournalMultiple Sclerosis and Related Disorders
Publication statusPublished - 1 Oct 2021

Cite this