Patient reported outcomes in ALS: characteristics of the self-entry ALS Functional Rating Scale-revised and the Activities-specific Balance Confidence Scale. Issue 7 (2nd October 2021)

• Record Type: Journal Article
• Authors: Chew, Sheena; Burke, Katherine M.; Collins, Ella; Church, Reagan; Paganoni, Sabrina; Nicholson, Katharine; Babu, Suma; Scalia, Jennifer B.; De Marchi, Fabiola; Ellrodt, Amy L.; Moura, Lidia M. V. R.; Chan, James; Berry, James D.
• Is Part Of: Amyotrophic lateral sclerosis and frontotemporal degeneration. Volume 22:Issue 7/8(2021)
• Page Start: 467
• Page End: 477
• Publication Date: 2021-10-02
• Subjects: Amyotrophic lateral sclerosis -- patient-reported outcome measures -- PROMs -- ALSFRS-R -- ABC Scale -- falls; 616.839
• DOI: 10.1080/21678421.2021.1900259
• Languages: English
• ISSNs: 2167-8421

Abstract

Abstract: Objective: This study characterized two patient-reported outcome measures (PROMs): a patient-facing adaptation of the revised amyotrophic lateral sclerosis (ALS) Functional Rating Scale ("self-entry ALSFRS-R") and the Activities-specific Balance Confidence (ABC) Scale. Methods : ALS patients presenting to clinic completed PROMs that included (1) the self-entry ALSFRS-R, (2) the Activities-specific Balance Confidence Scale (ABC Scale), and (3) a question about falls. PROM data were compared to one another and to the traditional ALSFRS-R collected by trained evaluators in clinic ("standard ALSFRS-R"). Results : Over the data collection period, 449 ALS patients completed at least one of the three PROMs. Self-entry vs. standard ALSFRS-R total scores ( n = 183) had high agreement (intraclass correlation (ICC)=0.81, 95% CI = 0.67, 0.88). Self-entry ALSFRS-R total scores were significantly higher than standard ALSFRS-R total scores (2.3 points, p < 0.001). In a subset of participants who contributed data at two timepoints, the average ALSFRS-R decline was not significantly different between methods ( n = 49). ABC scores correlated highly with self-entry and standard ALSFRS-R Gross Motor subdomain scores (Pearson's r = 0.72, p < 0.001 and Pearson's r = 0.76, p < 0.001, respectively; n = 130). ABC score was negatively correlated with the number of reported falls within the last month (Spearman's r =–0.40; p < 0.001; n = 130). A 10-point decrease in ABC score increased odds of a reported fall by 16%. Conclusions : In a multidisciplinary clinic setting, self-entry and standard ALSFRS-R scores were similar, but not interchangeable. Self-entry scores were higher than standard ALSFRS-R scores but declined at a similar rate to the standard ALSFRS-R. ABC scores correlated with self-reported fall history and thus may provide useful data for clinical care.