Objective

Brainstem lesions can cause a locked-in syndrome (LIS). At the initial state, the LIS can be complete (CLIS), without any possibility for the patient to communicate. The main issues are to do the right diagnosis and the recovery of a communication. The delay to the diagnosis of LIS is of about 78 days after the initial injury (León-Carrión, 2002). The aim of this study is to identify possibilities to improve the care of persons with LIS at the initial state.

Material/patients and methods

An original questionnaire of 33 items, concerning patient’s feelings and communication possibilities at the initial state of LIS, was sent to the 274 LIS members of the French association of LIS (ALIS) in November, 2015.

Results

Forty LIS answered to the questionnaire (between 24 and 76 y.o., 25 men, LIS happened between 1990 and 2015). Seventy-eight percent of participants evoked a comatose state after the LIS, around 22 days on average, and 68% remember a period in CLIS, from 4 days to 6 months. This CLIS period was due to a total absence of voluntary movements in 60% of cases. Relatives used a lot the “yes-no” code for 85% of the participants, but the score decreased to 28% for the doctors. Movements considered as very reliable were the blinks (for 61.1% of the participants), eyes movements (42%), and heads ones (25%). Augmentative and alternative communication tools recommended by the participants for the initial phase are “low cost” tools (81.8% thought they are essential), computers and internet connections (53%). Participants wished people talked to them in priority about news from their relatives (82.5% wished that a lot) and psychological suffering (57.5%). Finally, the diagnosis announcement often remains indirect, in 40% of the cases.

Discussion – conclusion

Communication recovery at the initial state of the LIS is often retardated. The “yes-no” code instauration could happen earlier, as the use of “low cost” communication devices.