Long-term independent brain-computer interface home use improves quality of life of a patient in the locked-in state: a case study

Abstract

Objective: Despite intense brain-computer interface (BCI) research for >2 decades, BCIs have hardly been established at patients' homes. The current study aimed at demonstrating expert independent BCI home use by a patient in the locked-in state and the effect it has on quality of life.

Design: In this case study, the P300 BCI-controlled application Brain Painting was facilitated and installed at the patient's home. Family and caregivers were trained in setting up the BCI system. After every BCI session, the end user indicated subjective level of control, loss of control, level of exhaustion, satisfaction, frustration, and enjoyment. To monitor BCI home use, evaluation data of every session were automatically sent and stored on a remote server. Satisfaction with the BCI as an assistive device and subjective workload was indicated by the patient. In accordance with the user-centered design, usability of the BCI was evaluated in terms of its effectiveness, efficiency, and satisfaction. The influence of the BCI on quality of life of the end user was assessed.

Setting: At the patient's home.

Participant: A 73-year-old patient with amyotrophic lateral sclerosis in the locked-in state.

Interventions: Not applicable.

Main outcome measure: The BCI has been used by the patient independent of experts for >14 months. The patient painted in about 200 BCI sessions (1-3 times per week) with a mean painting duration of 81.86 minutes (SD=52.15, maximum: 230.41). BCI improved quality of life of the patient.

Results: In most of the BCI sessions the end user's satisfaction was high (mean=7.4, SD=3.24; range, 0-10). Dissatisfaction occurred mostly because of technical problems at the beginning of the study or varying BCI control. The subjective workload was moderate (mean=40.61; range, 0-100). The end user was highy satisfied with all components of the BCI (mean 4.42-5.0; range, 1-5). A perfect match between the user and the BCI technology was achieved (mean: 4.8; range, 1-5). Brain Painting had a positive impact on the patient's life on all three dimensions: competence (1.5), adaptability (2.17) and self-esteem (1.5); (range: -3 = maximum negative impact; 3 maximum positive impact). The patient had her first public art exhibition in July 2013; future exhibitions are in preparation.

Conclusions: Independent BCI home use is possible with high satisfaction for the end user. The BCI indeed positively influenced quality of life of the patient and supports social inclusion. Results demonstrate that visual P300 BCIs can be valuable for patients in the locked-in state even if other means of communication are still available (eye tracker).

Keywords: Amyotrophic lateral sclerosis; Brain-computer interfaces; Locked-in syndrome; Quality of life; Rehabilitation.