Evaluation of the application of the European guidelines for the diagnosis and clinical care of amyotrophic lateral sclerosis (ALS) patients in six French ALS centres

European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies
B MarinEURECALS consortium

Abstract

Our objective was to evaluate the extent to which the 2005 recommendations of the European Federation of Neurological Sciences (EFNS) on the multidisciplinary management of amyotrophic lateral sclerosis (ALS) are followed in clinical practice. This was a multicentre observational study involving six French ALS referral centres receiving prevalent and incident cases. Recommendations were translated into ad hoc questions referring to key aspects of management, and their application was evaluated by a clinical research assistant who independently examined the medical charts (MCs). When necessary, an independent board-certified neurologist answered the questions based on examination of the MC and interview of the caring neurologist. Questions regarding diagnosis and communication were put to patients in a self-administered questionnaire. In all, 376 patients [176 incident, 200 prevalent cases; median age at diagnosis 62.8 years (interquartile range 55.7-72.3); sex ratio 1.37; 27.3% bulbar onset] were included. All the topics covered in the recommendations were evaluated: diagnostic delay (e.g. mean 13.6 months, associated with age and onset); breaking the news (e.g. criteria for communication quality were satisfactory in more than ...Continue Reading

References

Jul 24, 2001·Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders : Official Publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases·B R BrooksUNKNOWN World Federation of Neurology Research Group on Motor Neuron Diseases
Jul 24, 2001·Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders : Official Publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases·B R Brooks
Jul 24, 2001·Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders : Official Publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases·A L Dubrovsky
Jan 5, 2002·Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders : Official Publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases·G D BorasioUNKNOWN European ALS Study Group
Jul 23, 2005·Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders : Official Publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases·Julia M MorahanRoger Pamphlett
Dec 6, 2005·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·P M AndersenUNKNOWN EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis
Feb 8, 2011·Journal of Neurology, Neurosurgery, and Psychiatry·Peter BedeOrla Hardiman
Sep 15, 2011·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies· Markus Weber
Jun 10, 2014·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·B MarinUNKNOWN French register of ALS in Limousin
Jul 2, 2014·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Sabrina PaganoniNazem Atassi
Sep 10, 2014·The American Journal of Hospice & Palliative Care·Chafic Y KaramRichard Bedlack

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Citations

Mar 10, 2017·Current Medical Research and Opinion·Christian J HendrikszStefan A Kolb
Jun 7, 2017·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Sylvie LavernheJean-Philippe Camdessanché
Sep 6, 2017·Neuroepidemiology·Meira DandabaUNKNOWN FRALIM Consortium
Oct 17, 2017·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·A H V Schapira
May 1, 2020·Neurodegenerative Disease Management·Anne HogdenKaren Hutchinson
May 21, 2021·Rinshō shinkeigaku = Clinical neurology·Toshio ShimizuKazushi Takahashi

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