title: Severely affected ALS patients have broad and high expectations for brain-machine interfaces.
abstract: Brain-machine interfaces (BMIs) may provide new communication channels and motor function to individuals with severe neurodegenerative diseases, but little is known about their interests in such devices. We investigated the interests of severely affected ALS patients in BMIs, and examined factors that might influence these interests. We conducted an anonymous, mail-back questionnaire survey of severely disabled ALS patients diagnosed using the revised El Escorial criteria. Thirty-seven patients responded to the questionnaire. Twenty-nine (78.4%) had undergone tracheostomy positive pressure ventilation. More than 80% of the patients were interested in communication support. Thirty-three (89.2%) felt stressed during communication. Among those using assistive communication devices (17 patients), 15 (88.2%) were not satisfied with them. More than 50% of the patients expressed an interest in BMIs. Their expectations of BMIs ranged widely from emergency alarm to postural change. The frequent use of personal computers tended to be correlated with an interest in invasive BMIs (p = 0.07). In conclusion, this was the first questionnaire survey demonstrating that severely affected ALS patients have broad and high expectations for BMIs. Communication was the most desired support from BMIs for such patients. We need to meet their widely ranging expectations of BMIs.
authors.affiliation: Department of Neurosurgery, Osaka University Medical School , Osaka , Japan.
authors.forename: Yu
authors.initials: Y
authors.lastname: Kageyama
authors.forename: Masayuki
authors.initials: M
authors.lastname: Hirata
authors.forename: Takufumi
authors.initials: T
authors.lastname: Yanagisawa
authors.forename: Toshio
authors.initials: T
authors.lastname: Shimokawa
authors.forename: Jinichi
authors.initials: J
authors.lastname: Sawada
authors.forename: Shayne
authors.initials: S
authors.lastname: Morris
authors.forename: Nozomi
authors.initials: N
authors.lastname: Mizushima
authors.forename: Haruhiko
authors.initials: H
authors.lastname: Kishima
authors.forename: Osamu
authors.initials: O
authors.lastname: Sakura
authors.forename: Toshiki
authors.initials: T
authors.lastname: Yoshimine
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000451:nursing* / Q000523:psychology*; D062207:Brain-Computer Interfaces; D003142:Communication; D003143:Communication Devices for People with Disabilities; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012189:Retrospective Studies; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D014139:Tracheostomy
keywords: Brain-machine interfaces; amyotrophic lateral sclerosis; questionnaire survey