NEuroMuscular Omnicentre (NEMO), Fondazione Serena Onlus, Milan, Italy.
Department of Materials Science and COMiB Research Centre, University of Milano-Bicocca, Milan, Italy.
Disabil Rehabil Assist Technol. 2021 Jul;16(5):513-519. doi: 10.1080/17483107.2019.1683237. Epub 2019 Nov 5.
The main aim of this Human Centred Design project was to develop the Environment COntrol in Amyotrophic Lateral Sclerosis (ECO-ALS) System, a new device which could improve ALS patient's autonomy in controlling the environment. Moreover, we verified the feasibility and usability of this technology in ALS patients in advanced stages of the disease.
Twelve ALS patients in advanced disease stage were recruited, two patients for the development phase and ten patients and their caregivers for the two weeks' trial phase. We evaluated the impact of the ECOALS system by administering the Psychosocial Impact of Assistive Devices Scale (PIADS), the Individual Prioritised Problem Assessment (IPPA), the McGill Quality of Life Questionnaire (MQOL) and the Caregiver Burden Inventory (CBI).
In the trial phase, patients were very satisfied for having recovered their autonomy in the management of the EAB, that enabled patients to reduce calls to their caregivers to change their bed position. The IPPA questionnaire showed a significant improvement in patients' participation and management of the system. Moreover, the PIADS questionnaire showed that patients perceived a progress in competence, adaptability and areas of self-esteem, confirming a positive psychosocial impact of the patients' assistance device.
The project has collected some useful information for technological system development to face the need for autonomy ALS patients. Patients were satisfied with the tested aids and were interested in the future developments. Further studies are needed to improve the system and overcome some technical problems that occurred during the project.IMPLICATIONS FOR REHABILIATIONThe ECO-ALS system seems to improve the patients' perceived autonomy.The ECO-ALS system seems to improve the patients' perceived progress in competence, adaptability and areas of self-esteem, confirming a positive psychosocial impact of the assistance device.The ECO-ALS system seems to improve the patients' perceived quality of life.Patients were satisfied with the tested aids and were interested in the future developments.
本以人为中心的设计项目的主要目的是开发环境控制肌萎缩侧索硬化症（ECO-ALS）系统，这是一种新的设备，可以提高 ALS 患者在环境控制方面的自主性。此外，我们还在疾病晚期的 ALS 患者中验证了这项技术的可行性和可用性。
招募了 12 名处于疾病晚期的 ALS 患者，其中 2 名患者用于开发阶段，10 名患者及其护理人员用于为期两周的试用阶段。我们通过使用辅助设备的心理社会影响量表（PIADS）、个人优先问题评估（IPPA）、麦克吉尔生活质量问卷（MQOL）和护理人员负担量表（CBI）评估 ECOALS 系统的影响。
在试用阶段，患者对恢复对 EAB 的管理自主权非常满意，这使患者能够减少呼叫护理人员来改变他们的床位。IPPA 问卷显示患者对系统的参与和管理有显著改善。此外，PIADS 问卷显示患者在能力、适应性和自尊心方面都有进步，这证实了患者辅助设备的积极心理社会影响。
该项目为满足 ALS 患者自主需求的技术系统开发收集了一些有用的信息。患者对测试的辅助设备感到满意，并对未来的发展感兴趣。需要进一步研究来改进系统并克服项目中出现的一些技术问题。
ECO-ALS 系统似乎可以提高患者的感知自主性。ECO-ALS 系统似乎可以提高患者在能力、适应性和自尊心方面的感知进步，证实了辅助设备的积极心理社会影响。ECO-ALS 系统似乎可以提高患者的感知生活质量。患者对测试的辅助设备感到满意，并对未来的发展感兴趣。
