Independent home use of Brain Painting improves quality of life of two artists in the locked-in state diagnosed with amyotrophic lateral sclerosis

Abstract

This study reports the use of Brain Painting, a BCI application for creative expression, which was implemented at the homes of two end-users in the locked-in state. Both are artists who had gradually lost the ability to paint after being diagnosed with amyotrophic lateral sclerosis. The usability of the BCI in expert-independent use was evaluated by the end-users. End-user HP painted in 152 sessions within 22 months (in total: 255 h), end-user JT in 158 sessions within 15 months (in total: 168 h). With an accuracy of 70–90%, BCI control was mostly moderate to high. Both end-users were highly satisfied with the BCI as an assistive device. Brain Painting re-enabled them to be creatively active in their home environment and thus improved their feelings of happiness, usefulness, self-esteem, well-being, and consequently quality of life, and supports social inclusion. This long-term evaluation study suggests that BCI is a valuable tool for people in the locked-in state.