Systems Using Brain Signals to Communicate Can Help Advanced ALS Patients, But Improvements Needed

The Wadsworth Brain-Computer Interface (BCI) can help amyotrophic lateral sclerosis (ALS) patients who are severely disabled to communicate while in the home, a study reports, especially those in fairly stable health.

Improvements underway to this system, which relies on brain signals rather than muscles necessary for speaking or writing, are important in expanding its benefits and improving its ease of use.

The study “Independent home use of a brain-computer interface by people with amyotrophic lateral sclerosis,” published in the journal Neurology, also reported that many of the advanced ALS patients who tried the BCI system failed to complete its 12 to 18 months of home use. In half of the enrolled patients, this was due to disease progression or death, while others withdrew because an inability to effectively use BCI, a loss of interest, or a preference for other assistive devices.

The brain wave-based BCI system helps patients with ALS, as well as other neurological disorders that are characterized by severe speech impairment, to communicate. It reads a patient’s brain signals and converts them into words through a computer.

Users wear a cap with electrodes that record electroencephalogram (EEG) signals from the brain as patients look at a computer screen. Brain signals makes letters on the screen flash that allow for typed messages, even in patients unable to fully control eye movement.

Users can also select programmed commands, allowing communication without having to go through each letter.

Over the past 30 years, researchers have continued to develop and hone the technology. However, it has yet to be studied in an at-home setting.

“BCI use by individuals with ALS has been tested in research laboratories for many years. Those studies featured one patient at a time surrounded by numerous experts and support staff involved with training the individual to use the system, setting things up, and trouble shooting,” Michael Wolfson, PhD, director of the Program in Rehabilitation Engineering and Implantable Medical Devices at the National Institute of Biomedical Imaging and Bioengineering, said in a press release. “This is the first study that tested the real practicality of an individual with ALS using such a system independently at home.”

Among the 42 who consented to the study, 39 patients — all male — met the study criteria, but only 28 were able to use Wadsworth BCI.

In total, 27 patients, men ages 28 to 79, had a BCI placed in their homes, and the patients and their caregivers were trained in its use. Fourteen were able to complete the training and use the BCI system independently in their home, mainly for communication. But about half withdrew due to advancing illness or death, the study noted.

Data regarding BCI use were collected through the internet and researchers conducted periodic visits to evaluate BCI benefit, burden and perceived changes in quality of life.

On average, participants used the system two days each week in sessions that lasted about 1.5 hours, with users averaging three selections per minute.

Researchers found that technical problems with the system were rare. Results also indicated that patients and caregivers considered its benefits to exceed the burden of its use. Quality of life among patients remained stable.

Seven out of eight who completed the full study chose to keep the BCI for further use, the team reported.

Results indicate that “the Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes.” But, the researchers added, this communication system is most suitable for severely disabled patients who are otherwise in stable health.

“The user-related issues raised for the Wadsworth BCI are issues that apply to assistive communication technologies in general, whether conventional (i.e., muscle based) or BCI based,” the researchers wrote. “These devices are most successful for those able to commit time and effort to their mastery and use; thus, reasonably stable health is important.”

They added, “Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.”