Quality of life in patients with locked-in syndrome: Evolution over a 6-year period.
Level 3 - non-randomized controlled study
Longitudinal cohort follow-up study without an external control group
PubMed 26187655 · doi:10.1186/s13023-015-0304-z
What was done
A longitudinal survey assessed patients diagnosed with locked-in syndrome (LIS) across a 6-year interval, administering questionnaires in 2007 and 2013. The assessment evaluated sociodemographic parameters, clinical status (physical, handicap, and psychological status), self-reported quality of life (QoL) using the Anamnestic Comparative Self-Assessment (ACSA), and life integration via the French Reintegration to Normal Living Index (RNLI).
What was found
Of 67 patients included in 2007, 39 (58%) returned questionnaires in 2013 (stroke etiology in 51 total individuals). Among respondents, 21 individuals (70%) reported stable or improved QoL between 2007 and 2013. Physical and handicap statuses in 2007 and 2013 were not associated with QoL 6 years later, except for communication method: patients using a yes-no code reported significantly lower QoL in 2013 than those who did not. Exact numeric scores and statistical test values were not reported in the abstract.
Why it matters
This study demonstrates that individuals living with locked-in syndrome can maintain a stable, satisfactory quality of life over extended periods. It emphasizes that clinical support should focus heavily on preserving advanced communication methods.
Limits
The study is limited by high attrition (42% lost to follow-up over 6 years), introducing potential survival and responder bias. The sample size is small (n=39 completed follow-up), there was no comparative control group, and the abstract lacks exact numerical score distributions and confidence intervals.
Cited by
- supports In a study of locked-in syndrome patients in Israel who experienced pontine strokes, most communicated that they wished to continue living.