Free locked-in syndrome assessment calculators
Locked-in syndrome leaves a person awake and aware but unable to move or speak. These validated calculators, free, measure consciousness and the channels that remain.
Living with locked-in syndrome
In one survey, about 7 in 10 people with chronic locked-in syndrome reported being happy.
Awareness and thinking usually remain intact. Many people report a good quality of life, especially once a reliable way to communicate is found. Once someone is medically stable and well cared for, life expectancy runs to several decades.1 In a cohort of 29 people followed for over a decade, survival was 83 percent at 5 years, 83 percent at 10 years, and 40 percent at 20 years.2
- 1.Laureys S, et al. The locked-in syndrome: what is it like to be conscious but paralyzed and voiceless? Prog Brain Res. 2005;150:495-511.
- 2.Doble JE, Haig AJ, Anderson C, Katz R. Impairment, activity, participation, life satisfaction, and survival in persons with locked-in syndrome for over a decade: follow-up on a previously reported cohort. J Head Trauma Rehabil. 2003;18(5):435-444.
Understanding locked-in syndrome
Locked-in syndrome most often follows an acute lesion of the ventral pons, the front part of the brainstem, usually a stroke.1 Thinking and awareness are usually intact, while almost all voluntary movement is lost, often leaving eye movements as the main way to communicate. It is rare, and a precise prevalence is not well established.3
Bauer and colleagues described three forms in 1979. Classic locked-in syndrome leaves vertical eye movement and blinking. Incomplete locked-in syndrome leaves some further movement. Total locked-in syndrome leaves none at all, including the eyes, with cortical activity still visible on EEG.4
The diagnosis is often late. In one survey it was made on average 79 days after onset, around the middle of the second month, and in more than half of the cases reviewed in the literature it was a family member rather than a physician who first realised the person was aware.1,5 Because communication may be limited to eye movements, careful assessment matters both to confirm awareness and to find a reliable channel. These calculators measure the level of consciousness and responsiveness, and what a communication system costs the person using it.
- 3.Smith E, Delargy M. Locked-in syndrome. BMJ. 2005;330(7488):406-409.
- 4.Bauer G, Gerstenbrand F, Rumpl E. Varieties of the locked-in syndrome. J Neurol. 1979;221(2):77-91.
- 5.León-Carrión J, van Eeckhout P, Domínguez-Morales Mdel R, Pérez-Santamaría FJ. The locked-in syndrome: a syndrome looking for a therapy. Brain Inj. 2002;16(7):571-582.
Locked-in syndrome assessment calculators
Each one is free. Open it to take the assessment, get a score, and see what it measures and the evidence behind it.
With a clinician
Locked-in syndrome questions, answered
What causes locked-in syndrome?
Acute lesions of the ventral pons, the front part of the brainstem, are the most common cause, and most of those are strokes. The lesion cuts the pathways that carry movement commands out of the brain while leaving the parts that support wakefulness and thinking intact. That is why awareness survives when movement does not.
Is locked-in syndrome the same as a coma?
No. In a coma the person is not awake and not aware. In locked-in syndrome the person is both, and only the route out is blocked. That difference is easy to miss at the bedside, which is why the diagnosis is often late.
How long does it take to diagnose locked-in syndrome?
Longer than it should. In one survey of people with the syndrome, the diagnosis was made on average about 79 days after onset, in the middle of the second month. In a review of the literature, more than half the time it was a family member rather than a physician who first realised the person was aware, and some diagnoses took four to six years.
Are there different types of locked-in syndrome?
Three, described by Bauer and colleagues in 1979. Classic locked-in syndrome leaves vertical eye movement and blinking. Incomplete locked-in syndrome leaves some further movement beyond that. Total locked-in syndrome leaves no movement at all, including the eyes, while EEG shows cortical activity is preserved.
What is the life expectancy with locked-in syndrome?
Once someone is medically stable and well cared for, life expectancy runs to several decades. In a cohort of 29 people followed for over a decade, survival was 83 percent at 5 years, 83 percent at 10 years, and 40 percent at 20 years.
Do people with locked-in syndrome have a good quality of life?
Many report that they do. In a survey of chronic locked-in syndrome, 47 of the 65 people who gave complete answers said they were happy. Self-reported quality of life tends to be far better than clinicians and families assume, and the requests for euthanasia in these cohorts are infrequent.
Can a brain-computer interface help with locked-in syndrome?
The Brain-Computer Interface Registry connects people with locked-in syndrome to trials building new ways to communicate. Complete your assessments once, and be matched to trials as they open.
These calculators use validated instruments and are reference information, not a diagnosis.