A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority.
Level 4 - case-series / case-control
Cross-sectional survey of a single cohort without a comparison group
PubMed 22021735 · doi:10.1136/bmjopen-2010-000039
What was done
168 chronic locked-in syndrome (LIS) patients belonging to the French Association for LIS were invited to complete a survey on medical history, current status, and end-of-life preferences. Participants self-assessed global subjective well-being using the Anamnestic Comparative Self-Assessment (ACSA) scale (-5 anchored to worst period ever, +5 anchored to best period before LIS).
What was found
91 patients (54%) responded, and 26 were excluded due to missing quality-of-life data. Among the remaining patients, 47 reported happiness (median ACSA +3) and 18 reported unhappiness (median ACSA -4). Longer time living with LIS was correlated with happiness. Unhappiness was associated with anxiety and dissatisfaction with community mobility, recreation, and speech recovery. 58% stated they did not want resuscitation in case of cardiac arrest, and 7% expressed a wish for euthanasia.
Why it matters
This study indicates that severe, chronic locked-in syndrome does not inevitably lead to subjective distress, as most respondents reported positive well-being over time.
Limits
High risk of non-response and selection bias given the 54% response rate and exclusion of 26 respondents with incomplete data. The sample was restricted to members of a single French patient organization. The cross-sectional design prevents direct tracking of individual trajectories over time.