Quality of life in patients with locked-in syndrome: Evolution over a 6-year period

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.

Evaluation of quality of life in individuals with severe chronic motor disability: A major challenge

“…It has been previously observed that patients' subjective QoL is not related to physical impairments; this observation agrees with previous studies of different motor neuron disorders (1,2,25,34,38,48-53), SCI patients (54), and LIS patients (5,9,49,53,55). This illustrates the "disability paradox" reported by Albrecht and Devlieger (51,56).…”

“…The QoL of people in heavy motor disabilities is often subject to representations of caregivers whose patients depend: healthy individuals, caregivers, family support and health professionals frequently underestimate the QoL of the patients assuming that QoL in severely handicapped people is very poor (4)(5)(6)(7). But some studies showed that these persons may report relatively satisfactory QoL levels that are stable over time (8,9). The QoL is sometimes better than patients presented other disabilities, such as patients with new diagnoses of Alzheimer's disease (10) and patients with facial prostheses (11).…”

“…It is an instrument particularly adapted to populations with severe chronic motor disability and very limited verbal communication due to the rapid passation time (less than 5 minutes) (27,28). ACSA has demonstrated its feasibility among LIS patients (9,29). Two other generic instruments are largely used in these specific populations: the McGill scale and the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW).…”

Real-time classification of auditory sentences using evoked cortical activity in humans

“…Locked-in patients typically have little to no voluntary muscle control but retain cognition and awareness [29][30][31][32][33]. Although methods exist to provide basic communicative capabilities to locked-in patients [33][34][35][36] and are associated with increases in patient-reported quality of life [31,32], these approaches often involve tedious and difficult to learn procedures such as selecting characters one at a time at rates less than ten characters per minute (typing rates are typically more than 175 characters per minute in healthy individuals). Development of a device capable of directly interpreting intended speech from neural activity could result in significant improvements to the speed and naturalness of assistive speech technology and, as a result, the quality of life for impaired patients.…”

Locked-In Syndrome after Trauma—A Rare Case in the Literature

“…[1][2][3][4][5][6] Mortality in the first 4 months reaches 87% in vascular cases, but may be reduced if the diagnosis and rehabilitation are initiated precociously. 1,7 After clinical stabilization, survival may reach 83% in 10 years and 40% in 20 years. 1,7 The clinical picture should increase suspicion of LIS when the patient presents with quadriplegia and anarthria with preserved consciousness and cognition, [1][2][3][4][5][6] although ophthalmoplegia and reduced consciousness can be found during the acute phase of the injury.…”