Variation in assistive technology use in motor neuron disease according to clinical phenotypes and ALS functional rating scale - Revised score: A prospective observational study

BACKGROUND: Assistive devices enhance independence and quality of life for people living with motor neuron disease (MND), but prescription can be challenging. OBJECTIVE: Improved prescription of assistive devices, through improved understanding of the relationship between clinical phenotypes, Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R) functional domain sub-scores and assistive technology required by people living with MND. METHODS: Prospective, observational consecutive-sample study of 269 patients with MND diagnosis. Main outcome measures: MND phenotype, ALSFRS-R scores and assistive technology devices in use. RESULTS: A statistically significant difference in total concurrent assistive technology item use was found between phenotypes (p = 0.001), with those with ALS Bulbar onset using the least. There was also a statistically significant difference in assistive technology usage in five of seven assistive technology categories across the clinical phenotypes, namely orthoses (p < 0.000), mobility devices (p < 0.000), transfer devices (p < 0.000), communication devices (p < 0.000), and activities of daily living devices (p = 0.016). Correlations between ALSFRS-R sub-score items and assistive technology count confirmed the utility of this outcome measure for equipment prescription. CONCLUSIONS: Clinicians need to consider MND phenotype and/or ALSFRS-R domain sub-score in clinical decisionmaking regarding assistive technology, as this will determine the pattern of disease and its progression, and hence assistive technology required.