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Nationwide survey of 780 Japanese patients with amyotrophic lateral sclerosis: their status and expectations from
Yu Kageyama1,2, Xin He1,2, Toshio Shimokawa3
1Department of Neurological Diagnosis and Restoration, Osaka University Graduate School of Medicine, CoMIT, 2-2 Yamadaoka, Suita, Osaka, 913A565-0871, Japan.
Background:
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that causes eventual death through respiratory failure unless mechanical ventilation is provided. Brain-machine interfaces (BMIs) may provide brain control supports for communication and motor function. We investigated the interests and expectations of patients with ALS concerning BMIs based on a large-scale anonymous questionnaire survey supported by the Japan Amyotrophic Lateral Sclerosis Association.
Methods:
We surveyed 1918 patients with ALS regarding their present status, tracheostomy use, interest in BMIs, and their level of expectation for communication (conversation, emergency alarm, internet, and writing letters) and movement support (postural change, controlling the bed, controlling household appliances, robotic arms, and wheel chairs).
Findings:
Seven hundred and eighty participants responded. Fifty-eight percent of the participants underwent tracheostomy. Approximately, 80% of the patients experienced stress or trouble during communication. For all nine supports, > 60% participants expressed expectations regarding BMIs. More than 98% of participants who underwent tracheostomy expected support with conversation and emergency alarms. Participants who did not undergo tracheostomy exhibited significantly greater expectations than participants with tracheostomy did regarding all five movement supports. Seventy-seven percent of participants were interested in BMIs. Participants aged < 60 years had greater interest in both BMIs.
Interpretation:
This is the first large-scale survey to reveal the present status of patients with ALS and probe their interests and expectations regarding BMIs. Communication and emergency alarms should be supported by BMIs initially. BMIs should provide wide-ranging and high-performance support that can easily be used by severely disabled elderly patients with ALS.
