The development of an augmented reality device for the autonomous management of the electric bed and the electric wheelchair for patients with amyotrophic lateral sclerosis: a pilot study

Abstract

Purpose: 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.

Material and methods: 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).

Results: 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.

Conclusion: 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.

Keywords: Assessment; alternative communication; augmentative communication; communication aids for disabled; human-centred design; user-centred design.