Recommended outcome measures for inpatient rehabilitation of multiple sclerosis are not appropriate for the patients with substantially impaired mobility

Abstract

Currently used outcome measures are inadequate for patients with impaired mobility, and there is a dire need of specifically designed outcome measures for routine care that are less burdensome and short-term responsive.

Long-term worsening of different body functions in persons with progressive multiple sclerosis

“…A more detailed description of the assessments can be found elsewhere. 10 Inclusion criteria Inclusion into this study required the availability of at least three complete, concomitant assessments of RMI, 9-HPT, and EDSS, obtained over a period of at least 2 years. Moreover, only persons with an EDSS 5.5 at the first in-patient rehabilitation stay were analyzed.…”

“…1,2 Moreover, most instruments to measure impairments, including EDSS, were developed in persons with mild to moderate MS, and hence the understanding of disease progression in persons in advanced stages or with a more severe disease course is still partial. [3][4][5][6][7][8][9][10] To make further progress in understanding different disease course expressions, it is important to discern how established impairment measurements behave across the full spectrum of disease presentation (i.e. from mild to very severe impairments), which only few studies have attempted so far.…”

“…First, we aimed to describe and assess the dynamics of disability worsening based on EDSS and two other outcome measures (nine-hole peg test (9-HPT), Rivermead Mobility Index (RMI)) in persons attending a Swiss in-patient neuro-rehabilitation with EDSS 5.5. 10 Second, we sought to compare the dynamics and convergence of the two disability assessments relative to EDSS. These analyses were performed at two time-points: at time of EDSS-based disability worsening and at the last available follow-up.…”

“… 1 , 2 Moreover, most instruments to measure impairments, including EDSS, were developed in persons with mild to moderate MS, and hence the understanding of disease progression in persons in advanced stages or with a more severe disease course is still partial. 3 – 10 …”

Upper Extremity Capability Tests in Multiple Sclerosis

“…Upper extremity capacity tests are used in MS patients to measure both clinical progression and patients' responses to rehabilitation types. Ninehole pegs are the most commonly used tests in the evaluation of upper extremity functions in MS patients in clinical trials (31)(32)(33). EDSS testing, which is insufficient to show disease progression, is supported by additional tests in studies.…”