An epidemiological profile of dysarthria incidence and assistive technology use in the living population of people with MND in Scotland: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Objectives: People with motor neurone disease (pwMND) experience communication impairments due to speech and motor dysfunction. Communication support in the form of Augmentative and Alternative Communication (AAC) in conjunction with Assistive Technology (AT) access methods are available, however, variation in provision care pathways exists across Scotland. We conducted a baseline study of communication support for pwMND in Scotland to inform and improve future service provision.

Methods: A cross-sectional population-based study was undertaken. Anonymised demographic and clinical phenotypic data for all pwMND in Scotland were extracted from the Care Audit Research Evaluation of MND (CARE-MND) platform, the National MND Register for Scotland. Additional information for AT loans was provided by the third sector charitable organization MND Scotland (MNDS).

Results: In total, 371 pwMND were included, 43% of all pwMND were recorded as having impaired speech (recent ALSFRS-R score assessment ≤3) and 69% had been referred to Speech and Language Therapist (SLT) services, although there was variation in referral time from diagnosis date. AAC equipment had been acquired by 17.3% of all pwMND; most commonly iPads and the LightwriterTM speech generating device.

Conclusions: Our data highlight a high prevalence of speech impairment in pwMND irrespective of the subtype diagnosis. We therefore recommend standardized care pathways and earlier access to coordinated SLT and Occupational Therapist services to enable prospective and personalized decision making. Our findings further highlight the need for qualitative research to understand the preferences and impact of such interventions from the perspective of the user and their communication partners.