DOI: 10.6084/m9.figshare.21647153
title: A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States

description: 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. Cross-sectional data were collected from 216 PALS <i>via</i> an anonymous online questionnaire in 2021. 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. 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. Most people with amyotrophic lateral sclerosis (PALS) in this sample reported experiencing dysarthria, with 71.3% indicating at least some detectable speech disturbance (Revised ALS Functional Rating Scale [ALSFRS-R] speech rating ≤ 3) and 56.5% reporting reduced intelligibility (ALSFRS-R speech rating ≤ 2).Respondents used a wide variety of communication methods. Among respondents who were unable to meet their communication needs with speech alone, 84.6% used unaided methods (including speech), 52.3% used low-tech augmentative and alternative communication (AAC) and 90.8% used a speech-generating device.Service delivery improvements are needed to ensure timely, ongoing and comprehensive AAC education and intervention for PALS and their families.Communication over video calls (including virtual healthcare visits) is common among PALS and may be an important target for AAC intervention as the COVID-19 pandemic continues to limit in-person gatherings and appointments. Most people with amyotrophic lateral sclerosis (PALS) in this sample reported experiencing dysarthria, with 71.3% indicating at least some detectable speech disturbance (Revised ALS Functional Rating Scale [ALSFRS-R] speech rating ≤ 3) and 56.5% reporting reduced intelligibility (ALSFRS-R speech rating ≤ 2). Respondents used a wide variety of communication methods. Among respondents who were unable to meet their communication needs with speech alone, 84.6% used unaided methods (including speech), 52.3% used low-tech augmentative and alternative communication (AAC) and 90.8% used a speech-generating device. Service delivery improvements are needed to ensure timely, ongoing and comprehensive AAC education and intervention for PALS and their families. Communication over video calls (including virtual healthcare visits) is common among PALS and may be an important target for AAC intervention as the COVID-19 pandemic continues to limit in-person gatherings and appointments.