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LIT-1183: A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority

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StatusActive — read 2026-10-16 (NOTE-961) in full, from the open-access version in PubMed Central. Worth reading as the largest survey of chronic locked-in patients' own ratings of their lives: 47 of 65 rated their present life at or above the midpoint between their best period before LIS and their worst ever, and happiness rose with years in LIS, recovered speech and absence of anxiety. Read it knowing that it is a self-selected association sample (54% response, 26 more excluded) answering with a proxy's help, that most respondents had recovered some speech or limb movement, and that the authors expect its biases to overstate well-being.
Version2
Tagswell-being, neuroscience
ReportsCASE-107 — Locked-in syndrome: consciousness preserved with anarthria and quadriplegia; in the classic form, vertical eye movement and blinking remain and carry communication, and in the completely locked-in state no motor channel remains
Cited as “paper” byNOTE-961 — Bruno et al. — self-assessed well-being in chronic locked-in syndrome

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Bruno, M.-A., Bernheim, J. L., Ledoux, D., Pellas, F., Demertzi, A. & Laureys, S. (2011). BMJ Open 1(1):e000039. doi:10.1136/bmjopen-2010-000039. Open copy: PMC3191401.

Key takeaways

From the reading, NOTE-961.

  • Definition and forms. LIS is “quadriplegia (or quadriparesis) and aphonia (or severe hypophonia) with a primary mode of communication by eye movements or blinking”. Classic, incomplete and total forms are given with a citation to Bauer, Gerstenbrand and Rumpl (1979); “many classic LIS patients may evolve to incomplete LIS”.
  • The sample. 65 of 168 invited; vascular brainstem LIS only; median 8 years in LIS; speech recovery none 45%, words 19%, sentences 36%; some limb mobility 70%.
  • The result. 72% happy on the biographically anchored ACSA scale; correlates of unhappiness are shorter time in LIS, anxiety, no recovered speech, and dissatisfaction with mobility and recreation.
  • The caution. Low response, association members, proxy-aided answers; “most biases were likely to result in overestimations of SWB”. The time-in-LIS effect may be adaptation or “selection by attrition”.

Why this is here

For CASE-107: it documents lucid, evaluative life over years in locked-in syndrome, judged by patients against their own remembered past. The reading qualifies the use the CASE makes of it. Most of the sample is not on one eyelid: over half had recovered some speech and most some limb movement, and recovered speech is the strongest correlate of happiness. So it shows lucid judgement kept up for years with world-directed action severely reduced, and partly restored, not with action reduced to vertical eye movement. It also gives the source of the three forms of LIS that the CASE attributes to Laureys et al. (LIT-1198): Bauer et al. (1979).

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