Estimated Prevalence of the Target Population for Brain-Computer Interface Neurotechnology in the Netherlands.
Elmar G M Pels, Erik J Aarnoutse, Nick F Ramsey and 1 others
PMID 28639486WHAT IT FOUND
In the Netherlands, locked-in syndrome was estimated at 0.73 cases per 100 000 people.
Most patients lived at home, and many communicated with basic eye-blink or letter systems rather than advanced devices.
Key findings
01The estimated prevalence of locked-in syndrome in the Netherlands was 0.73 patients per 100 000 inhabitants.
02Neuromuscular disease was the most common cause of locked-in syndrome in the sample, reported in 55%, followed by stroke at 26%.
03Most locked-in syndrome patients lived at home, and communication was often basic: 19% used an alphabet system and 12% reported no communication AT.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The GP response rate was 21%, and the authors note this could overestimate prevalence if GPs with eligible patients were more likely to reply, or underestimate it because some questionnaires were not returned. The prevalence estimate projects 26 LIS patients found through GPs to the whole Dutch population, so the true count depends on that projection. Patients found through rehabilitation physicians, elderly-care physicians, media attention, or patient organizations were used for description but not prevalence, so the two samples are not the same. The paper reports no direct clinical examination of patients; classification relied on GP reports and questionnaires. It does not test brain-computer interfaces or any treatment, so it cannot establish efficacy or access.
The easy way to misread this
Do not read this as proof that brain-computer interfaces help people with locked-in syndrome. The paper only estimates prevalence and describes communication needs; it does not test a BCI.