Timing of Communication Device Introduction Defined by ALSFRS-R Score in Patients with Amyotrophic Lateral Sclerosis

Augmentative and alternative communication (AAC) devices are crucial for amyotrophic lateral sclerosis (ALS) patients because disease progression impairs verbal speech. Although the introduction of AAC devices must be appropriately timed, no guidelines currently exist. In this study, we examined the usefulness of the ALS functional rating scale-revised (ALSFRS-R) for predicting the timing of device introduction.

This study was a retrospective cross-sectional study with consecutive sampling of patients diagnosed with ALS who underwent rehabilitation at Kitasato University East Hospital between 2011 and 2018. Patients were introduced to AAC devices (writing, communication boards, switch control, and/or eye control) and underwent assessment at three timepoints: the start of rehabilitation, as each communication device was introduced, and at the end of rehabilitation. ALSFRS-R multiple comparisons were analyzed using the Kruskal-Wallis test and, as a post-test, the Steel-Dwass test was used. Receiver operating characteristic (ROC) curves and areas under the ROC curves (AUCs) based on ALSFRS-R total and sub-item scores were used to calculate cut-off values for when transitioning to a new type of device is necessary.

In this study, 216 patients underwent rehabilitation, and 92 met the inclusion criteria. The total ALSFRS-R scores significantly differed among the four devices, except for those between communication boards and switch control devices. The bulbar and respiratory sub-scores did not significantly differ between devices. For each device type, total or sub-item scores yielded an AUC of 0.8 or more.

Our findings suggest that the ALSFRS-R is a useful assessment for timing the introduction of communication devices, and its utilization could help therapists, caregivers, and families to provide AAC for patients with ALS.