Understanding the Psychological Well-being of Patients With Locked-in Syndrome: A Scoping Review.
Level 5 - mechanism / opinion, no new human data
Scoping review synthesizing heterogeneous observational studies and case series without systematic quality grading or meta-analysis
PubMed 36860234 · doi:10.7759/cureus.34295
What was done
A scoping review was conducted to synthesize literature on the psychological well-being of patients with locked-in syndrome (LiS). Eligible studies targeted individuals with LiS, evaluated psychological well-being, and explored related factors. Extracted data included population details, communication methods, quality of life (QoL) tools, and primary findings categorized into health-related QoL, global QoL, and other psychological assessments.
What was found
Across 13 eligible studies, patients with LiS demonstrated reasonable or standard-comparable psychological well-being on health-related and global QoL tools. Caregivers and healthcare professionals rated patients' psychological QoL lower than patients did themselves. Longer LiS duration, augmentative and alternative communication tools, and speech recovery were reported to positively affect QoL. Individual studies reported a range of 27% to 68% of patients experiencing thoughts of suicide and euthanasia.
Why it matters
This review highlights a substantial discrepancy between external caregiver assumptions and self-reported psychological well-being in locked-in syndrome. Recognizing that disease adaptation and communication aids support quality of life can guide clinical care and end-of-life counseling.
Limits
Only 13 studies were identified, and the abstract does not report the total participant sample size. As a scoping review, it does not provide meta-analytic pooling or risk-of-bias scoring. Findings may also reflect response bias, as patients able and willing to complete QoL assessments may not represent the entire LiS population.