Abstract
BackgroundImproved knowledge of the quality of life (QoL) of locked-in syndrome (LIS) patients have implications for managing their care, and assists clinicians in choosing the most appropriate interventions. We performed a survey of a population of LIS patients to describe the course of the QoL of LIS patients over a 6-year period and to determine the potential predictive factors of QoL changes over time.MethodThis is a study performed over a 6-year period in patients with a LIS diagnosis. Questionnaires were sent in 2007 and 2013. The following data were recorded: i) sociodemographic data; ii) clinical data related to LIS, physical/handicap status, psychological status; iii) self-reported QoL: Anamnestic Comparative Self-Assessment (ACSA); iv) Integration in life: French Reintegration to Normal Living Index (RNLI).ResultsAmong the 67 patients included in 2007, 39 (58 %) patients returned their questionnaire in 2013. The LIS etiology was stroke in 51 individuals. The QoL of the patients was relatively satisfactory compared to populations in other severe conditions. Twenty-one (70 %) individuals reported a stable/improved QoL between 2007 and 2013. The physical/handicap statuses in 2007 and 2013 were not related to the QoL 6 years later, with the exception of one communication parameter: the individuals who used yes-no code reported significantly lower QoL levels than those who did not in 2013.DiscussionIn opposition to a widespread opinion, LIS persons report a relatively satisfactory QoL level that stays stable over time, suggesting that life with LIS is worth living. Preservation of autonomy and communication may help them to live as normal life as possible.
Highlights
Improved knowledge of the quality of life (QoL) of locked-in syndrome (LIS) patients have implications for managing their care, and assists clinicians in choosing the most appropriate interventions
Locked-in syndrome (LIS) is a neurologic condition characterized by the paralysis of all four limbs, anarthria, and lower cranial nerve paralysis that most often results from a brainstem lesion [1]
These considerations incited us to conduct a survey of a population of LIS patients to describe the course of the QoL of LIS patients over a 6-year period and to determine the potential contribution of sociodemographic and clinical factors in the predicting QoL changes over time
Summary
Improved knowledge of the quality of life (QoL) of locked-in syndrome (LIS) patients have implications for managing their care, and assists clinicians in choosing the most appropriate interventions. Some determinants of QoL have been previously identified; these factors include disability/ handicap status [15], medical devices [13], social/familial support [14], depression [16] Sociodemographic variables, such as gender and level of education, that traditionally impact the QoL of the individuals, were not really found as QoL predictors in these specific populations. Evidence regarding the evolution of QoL over long durations and predictors of mid- and long-term QoL are lacking These considerations incited us to conduct a survey of a population of LIS patients to describe the course of the QoL of LIS patients over a 6-year period and to determine the potential contribution of sociodemographic and clinical factors in the predicting QoL changes over time
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
