Beyond the gaze: Communicating in chronic locked-in syndrome

Abstract

Objective: Locked-in syndrome (LIS) usually follows a brainstem stroke and is characterized by paralysis of all voluntary muscles (except eyes’ movements or blinking) and lack of speech with preserved consciousness. Several tools have been developed to promote communication with these patients. The aim of the study was to evaluate the current status regarding communication in a cohort of LIS patients.

Design: A survey was conducted in collaboration with the French Association of Locked-in syndrome (ALIS).

Subjects and methods: Two hundred and four patients, members of ALIS, were invited to fill in a questionnaire on communication issues and clinical evolution (recovery of verbal language and movements, presence of visual and/or auditory deficits).

Results: Eighty-eight responses were processed. All respondents (35% female, mean age = 52 ± 12 years, mean time in LIS = 10 ± 6 years) reported using a yes/no communication code using mainly eyes’ movements and 62% used assisting technology; 49% could communicate through verbal language and 73% have recovered some functional movements within the years.

Conclusion: The results highlight the possibility to recover non-eye dependent communication, speech production and some functional movement in the majority of chronic LIS patients.

• Assistive technologies
• brain–computer interface
• rehabilitation

Acknowledgements

The authors thank all participating LIS patients and their families for their participation.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

This research was supported by the French Association of Locked in Syndrome (ALIS), the Belgian National Funds for Scientific Research (FNRS), the European Commission (European ICT Programme Projects FP7-247919 DECODER), FEDER structural fund RADIOMED-930549, Fonds Léon Fredericq, the James McDonnell Foundation, the Mind Science Foundation, the French Speaking Community Concerted Research Action (ARC-06/11-340) and the University and University Hospital of Liège. The funding sources are not liable for any use that may be made of the information contained therein.