Details

Autor(en) / Beteiligte

• 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.

Titel

Patient reported outcomes in ALS: characteristics of the self-entry ALS Functional Rating Scale-revised and the Activities-specific Balance Confidence Scale

Ist Teil von

• Amyotrophic lateral sclerosis and frontotemporal degeneration, 2021-10, Vol.22 (7-8), p.467-477

Ort / Verlag

England: Taylor & Francis

Erscheinungsjahr

2021

Link zum Volltext

Quelle

Taylor & Francis Journals Auto-Holdings Collection

Beschreibungen/Notizen

• 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.