Roads to Remote Monitoring of Als

ABSTRACT

Monitoring disease progression in ALS is fundamental to both routine clinical care and outcome measure- ment in clinical trials. The ALS Functional Rating Scale (ALSFRS) has for decades provided a simple summary of disability progression but has well-recognised limitations. Rasch Overall ALS Disability Scale (ROADS) is a novel, mathematically designed, yet simple scale proposed to improve reporting of functional decline due to ALS. ROADS is, thus far, not widely validated or broadly applied in clinical practice. We describe the introduction of ROADS to patients attending an NHS trust, while gathering descriptive qualitative feedback on the questionnaire acceptability and utility. Remote data collection and self-completion was mandated by the Covid-19 pandemic. The results from the ROADS questionnaire are contrasted with ALSFRS scores, appraising the pattern of disability for each patient on both rating scales and highlighting additional information provided by ROADS to further inform clinical management. We encourage review of ROADS scores alongside objective respiratory measures and King's staging.