Division of Physical Medicine and Rehabilitation.
Amyotroph Lateral Scler Frontotemporal Degener. 2013 Dec;14(7-8):546-52. doi: 10.3109/21678421.2013.803576. Epub 2013 Jul 8.
People with amyotrophic lateral sclerosis (PwALS) show progressive loss of voluntary muscle strength. In advanced disease, motor and phonatory impairments seriously hinder the patient's interpersonal communication. High-tech devices such as eye tracking communication devices (ETCDs) are used to aid communication in the later stages of ALS. We sought to evaluate the effect of ETCDs on patient disability, quality of life (QoL), and user satisfaction, in a group of 35 regular ETCD users in late-stage ALS with tetraplegia and anarthria. The following scales were administered: 1) the Individually Prioritized Problem Assessment (IPPA) scale, in three conditions: without device, with ETCD and, when applicable, with an Eye Transfer (ETRAN) board; 2) the Psychosocial Impact of Assistive Devices Scale (PIADS); and 3) the Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0). With ETRAN, IPPA showed an increase in communicative abilities with respect to the condition without device, but ETCD produced a further significant increase. PIADS evidenced a large increase of QoL, and QUEST 2.0 showed high user satisfaction with ETCD use. In conclusion, ETCDs should be considered in late-stage ALS with tetraplegia and anarthria, since in these patients they can reduce communication disability and improve QoL.
肌萎缩侧索硬化症（ALS）患者表现出进行性的随意肌肉力量丧失。在疾病晚期，运动和发声障碍严重阻碍了患者的人际交流。高科技设备，如眼动追踪通讯设备（ETCD），用于辅助 ALS 晚期患者的交流。我们评估了 35 名晚期四肢瘫痪和无言语ALS 患者使用 ETCD 对患者残疾、生活质量（QoL）和用户满意度的影响。使用以下量表进行评估：1）个体化优先问题评估（IPPA）量表，分为三种情况：无设备、使用 ETCD 和（适用时）使用眼转移（ETRAN）板；2）辅助设备心理社会影响量表（PIADS）；3）魁北克辅助技术用户满意度评估（QUEST 2.0）。使用 ETRAN，与无设备相比，IPPA 显示出沟通能力的提高，但 ETCD 进一步显著提高。PIADS 证明了生活质量的显著提高，QUEST 2.0 显示用户对 ETCD 使用非常满意。总之，对于四肢瘫痪和无言语的晚期 ALS 患者，应考虑使用 ETCD，因为在这些患者中，ETCD 可以减少交流障碍并提高生活质量。
