Self-report versus performance measure in gauging level of function with multiple sclerosis

Abstract

Background Multiple sclerosis (MS) is a debilitating, progressive disease with no known cure. Symptoms vary widely for persons with MS and measuring levels of fine motor, gross motor and cognitive function is a large part of assessing disease progression in both clinical and research settings. While self-report measures of function have advantages in cost and ease of administration, questions remain about the accuracy of such measures and the relationship of self-reports of functioning to performance measures of function. Objective The purpose of this study was to compare scores on a self-report measure of functional limitations with MS with a performance-based measure at five different time points. Methods Sixty participants in an ongoing longitudinal study completed two measures of function annually over a five-year period - the self-report Incapacity Status Scale and the MS Functional Composite (MSFC), a performance test. Pearson correlations were used to explore the association of self-report and performance scores. Results There were moderate to strong correlations among the ISS total (r= −.53 to −.63, p<.01) and subscale scores of gross (r=.79 to .87; p<.01)) and fine (r= .47 to .69; p<.01) motor function and the corresponding MSFC performance measure. The pattern of change over time in most scores on self-report and performance measures was similar. Conclusion Findings suggest that the self-report measure examined here, which has advantages in terms of feasibility of administration and patient burden, does relate to performance measurement, particularly in the area of gross motor function, but it may not adequately reflect cognitive function.

Selected health behaviors moderate the progression of functional limitations in persons with multiple sclerosis: Eleven years of annual follow-up

“…While there are limitations associated with this approach, these must be balanced with the feasibility of examining these constructs in a large geographically dispersed sample. In that sense, our findings are complimentary to focused assessments of health behaviors and functional performance using smaller samples [29]. In addition, the length of follow-up (11 years) exacerbated a challenge faced by all longitudinal studies, the attrition of participants.…”

“…Total scores reflect limitations in a wide range of functions (ambulation, dressing, bathing, eating, fatigue, mood, cognition) and can range from 0 to 64. Total scores on the ISS were significantly related to performance measures of ambulation (r= −.49) and upper extremity coordination and control (r=−.57), and the pattern of change over time in most scores on the ISS self-report and performance measures of functioning was similar [4,29]. Cronbach’s alpha for the total ISS score ranged from .82 to .88 across the time points.…”

A Systematic Review of the Effects of Second-Eye Cataract Surgery on Motor Function

“…The measures previously discussed were objective measures of motor performance, that is to say, that they are experimentally controlled and collected by a third party (the researcher) and that they are free from social desirability and self-report bias ( Yang et al, 2016 ). However, these can be criticised for failing to capture information on the more ‘human’ side of changes to motor function such as the subjective ongoing experience of the participant, as well as their perceived competencies and ability to perform ADLs ( Stuifbergen et al, 2014 ; Nielsen et al, 2016 ). This is where subjective/self-report measures of motor function are particularly useful and have been linked to long-term health outcomes ( Osoba, 2011 ).…”

Health Promotion, Functional Abilities, and Quality of Life Before and During COVID-19 in People With Multiple Sclerosis

“…A lower score indicates closer to normal or no difficulty, and a higher score indicates greater activity limitation. Reliability and validity have been supported in studies of people with MS (Stuifbergen et al, 2014). The Cronbach’s alpha for the ISS in this study ranged from .85 to .86.…”