Le Locked-In Syndrome : la conscience emmurée

Bruno, Marie-Aurélie; Pellas, F.; Schnakers, Caroline; Eeckhout, Pascal Van; Bernheim, Jan L.; Pantke, Karl-Heinz; Damas, François; Faymonville, Marie; Moonen, Gustave; Goldman, Serge; Laureys, Steven

doi:10.1016/j.neurol.2007.12.010

Cited by 28 publications

(10 citation statements)

References 81 publications

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“…Consequently, once an LIS patient becomes medically stable, despite the persistent and severe physical impairments, life expectancy can be significantly improved using appropriate medical care [ 3 ]. The life expectancies of stable LIS patients may be very long; 83 % of patients live 10 years, and 40 % live 20 years [ 4 , 5 ]. The issue of the “quality” of this life also remains an important challenge.…”

Section: Introductionmentioning

confidence: 99%

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

Rousseau

Baumstarck

Alessandrini

et al. 2015

Orphanet J Rare Dis

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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.

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Section: Introductionmentioning

confidence: 99%

“…Several studies have previously explored the QoL of LIS patients [ 5 , 9 – 14 ] and surprisingly have shown that the QoL of LIS patients is often in the same range as that of healthy individuals. Despite their extreme physical impairment, a number of LIS patients maintain a good QoL.…”

Section: Introductionmentioning

confidence: 99%

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

Rousseau

Baumstarck

Alessandrini

et al. 2015

Orphanet J Rare Dis

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“…Therefore, if quality of life is based on the perceived value of physical and mental functioning, it is possible that healthy subjects under-estimate patients with chronic disability. Indeed, studies show that, when partners or caregivers rate patients' quality of life, the scores are significantly lower than when patients do it for themselves [12][13][14][15][16][17]. In light of their severe disability, patients' higher self-ratings on quality of life measures is mostly known as the 'disability paradox' [18].…”

Section: Introductionmentioning

confidence: 99%

A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome

Demertzi

Jox²,

Racine

et al. 2014

Brain Injury

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Objectives: Patients with locked-in syndrome often self-report a higher quality of life than generally expected. This study reports third-person attitudes towards several salient issues on locked-in syndrome. Methods: Close-ended survey among conference attendees from 33 European countries. Analysis included chi-square tests and logistic regressions. Results: From the 3332 respondents (33% physicians, 18% other clinicians, 49% other professions; 47% religious), 90% agreed that patients with locked-in syndrome can feel pain. The majority (75%) disagreed with treatment withdrawal, but 56% did not wish to be kept alive if they imagined themselves in this condition (p50.001). Religious and southern Europeans opposed to treatment withdrawal more often than non-religious (p50.001) and participants from the North (p ¼ 0.001). When the locked-in syndrome was compared to disorders of consciousness, more respondents endorsed that being in a chronic locked-in syndrome was worse than being in a vegetative state or minimally conscious state for patients (59%) than they thought for families (40%, p50.001). Conclusions: Personal characteristics mediate opinions about locked-in syndrome. The dissociation between personal preferences and general opinions underlie the difference in perspective in disability. Ethical responses to dilemmas involving patients with locked-in syndrome should consider the diverging ethical attitudes of stakeholders.

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“…Detecting signs of consciousness in these patients is particularly challenging. A study performed in collaboration with the French Association for the LIS (ALIS; http://alis-asso.fr/) showed that physicians realized that the patient was conscious and able to communicate via eye movements in only 62% of cases (Bruno et al, 2008). Additionally, the time elapsed between the insult and the diagnosis of LIS is about 78 days .…”

Section: Introductionmentioning

confidence: 99%

Detecting consciousness in a total locked-in syndrome: An active event-related paradigm

et al. 2009

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Le Locked-In Syndrome : la conscience emmurée

Cited by 28 publications

References 81 publications

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

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

A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome

Detecting consciousness in a total locked-in syndrome: An active event-related paradigm

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