Article

People who suffer from paralysis have difficulties participating in
society. Particularly burdensome is the locked-in syndrome (LIS). LIS patients
are not able to move and speak but are cognitively healthy.
They rely on
assistive technology to interact with the world and may benefit from
neurotechnological advances. Optimal research and design of such aids requires a
well-defined target population. However, the LIS population is poorly characterized and the number of patients in this condition is unknown. OBJECTIVE: Here we estimated and described the LIS patient population in the Netherlands to
define the target population for assistive (neuro)technology. METHODS: We asked
physicians in the Netherlands if they had patients suffering from severe
paralysis and communication problems in their files. Physicians responding
affirmatively were asked to fill out a questionnaire on the patients' status.
RESULTS: We sent out 9570 letters to general practitioners (GPs), who reported 83
patients. After first screening, the GPs of 46 patients received the
questionnaire. Based on the responses, 26 patients were classified as having LIS.
Extrapolation of these numbers resulted in a prevalence of 0.73 patients per 100
000 inhabitants. Notable results from the questionnaire were the percentage of
patients with neuromuscular disease (>50%) and living at home (>70%).
CONCLUSIONS: We revealed an etiologically diverse group of LIS patients. The
functioning and needs of these patients were, however, similar and many relied on
assistive technology. By characterizing the LIS population, our study may
contribute to optimal development of assistive (neuro)technology.

Langue : ANGLAIS