Disparities in perceptions of distress and burden in ALS patients and family caregivers, Neurology, vol.62, issue.10, pp.1766-70, 2004. ,
DOI : 10.1212/01.WNL.0000125180.04000.A4
Prospective study of palliative care in ALS: choice, timing, outcomes, Journal of the Neurological Sciences, vol.169, issue.1-2, pp.108-121, 1999. ,
DOI : 10.1016/S0022-510X(99)00227-0
EFNS task force on management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. An evidence-based review with good practice points, European Journal of Neurology, vol.58, issue.5, pp.921-959, 2005. ,
DOI : 10.1136/jnnp.70.3.417
Good practice in the management of amyotrophic lateral sclerosis: clinical guidelines. An evidence-based review with good practice points. EALSC Working Group, Amyotroph Lateral Scler, 2007. ,
Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis, Journal of Medical Ethics, vol.34, issue.9, pp.664-672, 2008. ,
DOI : 10.1136/jme.2007.022731
Occurrence of eye movement disorders in motor neuron disease, Amyotrophic Lateral Sclerosis, vol.94, issue.1, pp.84-90, 2011. ,
DOI : 10.1080/146608200300079536
The epidemiology and treatment of ALS: Focus on the heterogeneity of the disease and critical appraisal of therapeutic trials, Amyotrophic Lateral Sclerosis, vol.16, issue.4, pp.1-10, 2010. ,
DOI : 10.1212/01.wnl.0000223353.34006.54
URL : https://hal.archives-ouvertes.fr/hal-00605454
Mechanical ventilation in amyotrophic lateral sclerosis: a cross-cultural perspective, Journal of Neurology, vol.245, issue.14, pp.7-12, 1998. ,
DOI : 10.1007/s004150050641
Discontinuation of mechanical ventilation in patients with amyotrophic lateral sclerosis, Journal of Neurology, vol.245, issue.11, pp.717-739, 1998. ,
DOI : 10.1007/s004150050273
Palliative care in amyotrophic lateral sclerosis, Neurologic Clinics, vol.19, issue.4, 2001. ,
DOI : 10.1016/S0733-8619(05)70049-9
URL : https://hal.archives-ouvertes.fr/hal-00613580
Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey, Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, vol.2, issue.3, pp.159-64, 2001. ,
DOI : 10.1080/146608201753275517
Comparison of instruments addressing quality of life in patients with ALS and their caregivers, Neurology, vol.58, issue.2, pp.320-322, 2002. ,
DOI : 10.1212/WNL.58.2.320
Home mechanical ventilation for amyotrophic lateral sclerosis: nasal compared to tracheostomy-intermittent positive pressure ventilation, Journal of the Neurological Sciences, vol.139, pp.123-131, 1996. ,
DOI : 10.1016/0022-510X(96)00099-8
Tracheostomy in amyotrophic lateral sclerosis: a 10-year population-based study in Italy, Journal of Neurology, Neurosurgery & Psychiatry, vol.81, issue.10 ,
DOI : 10.1136/jnnp.2009.175984
Caregiver burden and patients' perception of being a burden in ALSNeurology, pp.1780-1782, 2005. ,
Neurobehavioral symptoms in ALS are negatively related to caregivers??? burden and quality of life, European Journal of Neurology, vol.44, issue.10, pp.1298-303, 2010. ,
DOI : 10.1111/j.1468-1331.2010.03016.x
Issues of France's "Leonetti Act": Involvement of amyotrophic lateral sclerosis patients in prior discussions concerning respiratory support and end-of-life care ,
URL : https://hal.archives-ouvertes.fr/inserm-01376047
EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) -revised report of an EFNS task force, Eur J Neurol, 2011. ,
A longitudinal study on quality of life and depression in ALS patient???caregiver couples, Neurology, vol.68, issue.12, pp.923-929, 2007. ,
DOI : 10.1212/01.wnl.0000257093.53430.a8
Quality of life for ventilator-dependent ALS patients and their caregivers, Journal of the Neurological Sciences, vol.160, issue.1, pp.134-140, 1998. ,
DOI : 10.1016/S0022-510X(98)00212-3
Causes of death amongst French patients with amyotrophic lateral sclerosis: a prospective study, European Journal of Neurology, vol.298, issue.Suppl. 1 ,
DOI : 10.1111/j.1468-1331.2008.02307.x
Management of respiratory symptoms in ALS, Journal of Neurology, vol.38, issue.4, 2010. ,
DOI : 10.1007/s00415-010-5830-y
ALS patients on TPPV: Totally locked-in state, neurologic findings and ethical implications, Neurology, vol.61, issue.1, pp.135-142, 2003. ,
DOI : 10.1212/01.WNL.0000069925.02052.1F
A nationwide survey of ALS patients on trachoestomy positive pressure ventilation (TPPV) who developed a totally locked-in state, TLS) in Japan]. [Article in Japanese, Abstract in English] Rinsho Shinkeigaku, pp.476-80, 2008. ,
The Amyotrophic Lateral Sclerosis Functional Rating Scale Predicts Survival Time in Amyotrophic Lateral Sclerosis Patients on Invasive Mechanical Ventilation, Chest, vol.132, issue.1, pp.64-73, 2007. ,
DOI : 10.1378/chest.06-2712
Are amyotrophic lateral sclerosis patients cognitively normal? Neurology, pp.1094-1101, 2003. ,
Patients With Amyotrophic Lateral Sclerosis Receiving Long-term Mechanical Ventilation, Chest, vol.110, issue.1, pp.249-55, 1996. ,
DOI : 10.1378/chest.110.1.249
The course of the terminal phase in patients with amyotrophic lateral sclerosis, Journal of Neurology, vol.248, issue.7, pp.612-618, 2001. ,
DOI : 10.1007/s004150170140
Measuring life quality, physical function and psychological well-being in neurological illness, Amyotrophic Lateral Sclerosis, vol.29, issue.2, pp.461-469, 2010. ,
DOI : 10.1080/14660820310016066
Epidemiology and clinical features of amyotrophic lateral sclerosis in Ireland between, J Neurol Neurosurg Psychiatry, 1995. ,
Cognitive impairment in amyotrophic lateral sclerosis, The Lancet Neurology, vol.6, issue.11, 2007. ,
DOI : 10.1016/S1474-4422(07)70265-X
in Fin de vie, éthique et société, sous la direction de E. Hirsch, collection « Espace éthique », éditions érès, 2012. ,
Predictors and course of elective long???term mechanical ventilation: A prospective study of ALS patients, Amyotrophic Lateral Sclerosis, vol.169, issue.1, pp.86-95, 2006. ,
DOI : 10.1159/000086679
Quality of life of ALS and LIS patients with and without invasive mechanical ventilation, Journal of Neurology, vol.19, issue.3, pp.1801-1805, 2011. ,
DOI : 10.1007/s00415-011-6018-9
Home tracheotomy mechanical ventilation in patients with amyotrophic lateral sclerosis: causes, complications and 1-year survival, Thorax, vol.66, issue.11, pp.948-52, 2011. ,
DOI : 10.1136/thx.2011.160481
Amyotrophic Lateral Sclerosis and Life-Sustaining Therapy: Patients' Desires for Information, Participation in Decision Making, and Life-Sustaining Therapy, Mayo Clinic Proceedings, vol.66, issue.9, pp.906-919, 1991. ,
DOI : 10.1016/S0025-6196(12)61577-8
Survival and quality of life after tracheostomy for acute respiratory failure in patients with amyotrophic lateral sclerosis, Journal of Critical Care, vol.26, issue.3, pp.329-336, 2010. ,
DOI : 10.1016/j.jcrc.2010.06.003