Survey research on the awareness and usage of accessibility features of information and communication technology devices among patients with amyotrophic lateral sclerosis

We aimed to explore perceptions of digital technology and the usage of information and communication technology (ICT) devices among patients with amyotrophic lateral sclerosis (ALS) and their caregivers. In October 2023, we held a nationwide webinar titled “ALS Café” and distributed a self-report questionnaire to patients with ALS and caregivers, including family members, which covered topics such as awareness, usage of accessibility features, and current support for the use of ICT devices. Thirty-one patients with ALS and 24 of their caregivers responded (average age: 57.1 ± 10.1). The ALS Functional Rating Scale-Revised (ALSFRS-R) score was 26.6 ± 14.1. Overall, 69.6 % of respondents were aware of accessibility features, 71.4 % of those under 70, and 50.0 % of those over 70. Frequently used features included browsing assistance (32.1 %), voice operation (30.4 %), mouse or touch pen operation (26.8 %), synthesized voice reading (23.2 %), gaze input operation (19.6 %), and switch operation (14.3 %). Self-help assistance for ICT devices was used by 65.8 % of respondents with an ALSFRS-R score ≥ 20 and 11.8 % with an ALSFRS-R score < 20. Regarding government services, 85 % of respondents were unaware of ICT support centers for persons with disabilities. This study revealed the awareness and usage of accessibility features of ICT devices among patients with ALS and their caregivers. Raising awareness of accessibility features among older adults and improving support systems for those with mild symptoms are necessary.