The importance of understanding minimal important difference for ALSFRS-R: A reply to ‘Do we really need to calculate a minimal important difference for ALSFRS-R?’ https://doi.org/10.1080/21678421.2023.2248199
Abstract
We appreciate the interest in our efforts to calculate a minimal important difference (MID) for the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) (1) and are grateful for the opportunity to clear up several misconceptions about this work. It is important to note that the MID was never intended to be used as the deciding factor for whether or not a clinical trial is positive, nor was it intended to be rigidly applied as a cutoff value for treatment decisions on an individual basis. The value of calculating the MID is that it provides a contextual framework for patients and clinicians to understand research results and clinical progression when the ALSFRS-R is in use. Given this important application of the MID, the fact that our study included an unselected group of ALS clinic patients representing the full spectrum of ALS functional abilities is a strength of our approach. Studying MID in a broad, real-world population of pALS allows clinicians and stakeholders to understand MID for the overall ALS population and apply it to everyday clinical decision-making. Our work is an important first step toward filling a knowledge gap that has been present for more than 20 years of using the ALSFRS-R. It is true that the MID calculated in our study does not provide a simple, one-size-fits all cutoff, but it certainly provides helpful contextual parameters for understanding clinical trial results, judging the importance of treatment effects, and analyzing the…
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