A qualitative evaluation of the revised amyotrophic lateral sclerosis functional rating scale (ALSFRS-R) by the patient community: a web-based cross-sectional survey. Issue 3 (3rd April 2023)

• Record Type: Journal Article
• Authors: Boyce, Danielle; Robinson, Michael; Cedarbaum, Jesse M.; Shank, Lisa M.; McDermott, Christopher J.; van Eijk, Ruben P. A.
• Is Part Of: Amyotrophic lateral sclerosis and frontotemporal degeneration. Volume 24:Issue 3/4(2023)
• Page Start: 272
• Page End: 280
• Publication Date: 2023-04-03
• Subjects: amyotrophic lateral sclerosis -- clinical outcomes -- measurement -- qualitative study; 616.839
• DOI: 10.1080/21678421.2022.2140592
• Languages: English
• ISSNs: 2167-8421

Abstract

Abstract: Objective: The revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) is the most commonly used outcome measure in ALS studies. The aim of this study was to identify potential limitations of the ALSFRS-R from the perspective of people living with ALS and their caregivers. Methods: A web-based survey was developed by investigators, people living with ALS, and their caregivers, and shared across social media. For each item, participants were asked, "Can you think of a situation where you might not be able to answer this item accurately or that your answer might not reflect your abilities?" Responses were divided into two categories: criticisms that could be addressed in a manual or issues with the items/responses that would require measure modification. Results: 57 participants (72% participants with ALS, 28% caregivers) responded to at least one item question, of which 71.9% expressed concern about at least one item. The most frequently identified items were speech, walking, and cutting food. Common criticisms were: language used is of a medical literacy level too high; item is situational; difficult to distinguish the difference between response choices; and the structure and/or underlying assumptions of the item makes it difficult to answer. Conclusions: Several items of the ALSFRS-R were considered to inaccurately reflect the abilities of patients with ALS. The ALSFRS-R may need a revision to address these issues, preferably in co-development with people living with ALS and their caregivers, and/or alternate outcome measures should be considered for patients with ALS.