Lulé · Progress in brain research 2009 · Narrative review with observational data · n=?

Life can be worth living in locked-in syndrome.

Cited 218 times in the scientific literature.

Level 5 - mechanism / opinion, no new human data

Narrative review presenting literature and unspecified new observational data without systematic review methods

PubMed 19818912 · doi:10.1016/S0079-6123(09)17723-3 · record verified 2026-08-26

What was done

The authors reviewed literature and presented new data on psychosocial adjustment, quality of life, and depressive symptoms in patients with locked-in syndrome resulting from acute (such as brainstem stroke) or chronic (such as amyotrophic lateral sclerosis) etiologies.

What was found

No numerical values or effect sizes are provided in the abstract. Directionally, physical functioning did not predict quality of life or depressive symptoms. Perceived social support emerged as the strongest predictor of psychosocial adjustment. Patients often rated their quality of life similarly to healthy age-matched peers, whereas primary caregivers and spouses rated the patients' quality of life significantly lower.

Why it matters

The findings challenge common clinical assumptions that severe motor paralysis inherently precludes an acceptable quality of life, highlighting the value of assistive communication and psychosocial support.

Limits

The abstract provides no sample sizes, numerical metrics, or systematic search methods. Findings are subject to selection bias and survivorship bias inherent to narrative reviews of locked-in populations.

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