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 [Formula: see text]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.

中文翻译：

---

苏格兰MND患者生活中构音障碍发生率和辅助技术使用的流行病学概况。

目的：运动神经元疾病（pwMND）的人由于言语和运动功能障碍而出现交流障碍。可以使用增强和替代沟通（AAC）以及辅助技术（AT）访问方法的形式来提供沟通支持，但是，苏格兰各地的护理服务途径存在差异。我们对苏格兰pwMND的通信支持进行了基线研究，以告知和改善未来的服务提供。方法：进行了基于人群的横断面研究。苏格兰所有pwMND的匿名人口统计学和临床​​表型数据摘自MND的护理审计研究评估（CARE-MND）平台，苏格兰国家MND注册机构。第三部门慈善组织苏格兰MND（MNDS）提供了有关AT贷款的其他信息。结果：总共包括371 pwMND，所有pwMND的43％被记录为语音受损（最近的ALSFRS-R评分评估[公式：参见文本] 3），尽管从诊断日期算起的转诊时间有所不同，但已有69％的人转诊至语言和语言治疗师（SLT）服务。AAC设备已购买了所有pwMND的17.3％；结论：我们的数据强调了pwMND语音障碍的高患病率，与亚型诊断无关。因此，我们建议采用标准化的护理途径，并提早获得SLT和职业治疗师的协调服务，以实现前瞻性和个性化的决策。