A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States

Abstract

Purpose The objective of this study was to explore and describe current trends in the augmentative and alternative communication (AAC) use and service delivery experiences of people with amyotrophic lateral sclerosis (PALS) in the U.S. Methods Cross-sectional data were collected from 216 PALS via an anonymous online questionnaire in 2021. Results Over 70% of participants reported at least some detectable speech disturbance, and approximately half used aided communication during face-to-face interactions. Among respondents with severe speech impairment, over 90% reported using speech-generating devices, and just over half reported using low-tech AAC. Most participants had met with an SLP to discuss speech and communication, but varied in both timing of the initial intervention and frequency of ongoing intervention. Fewer than half reported that their family members or other important people had received education or support related to communication for PALS. Participants also shared their use of and experiences with telephone and video calls, access methods, mounting systems, word prediction and stored phrases, and message and voice banking. Conclusions Results highlight the importance of early referral for AAC intervention, ongoing re-evaluation and treatment, involvement of communication partners and support for multimodal communication and adaptation to changing needs.