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Research Article

Breaking the news in amyotrophic lateral sclerosis

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Pages 195-201 | Published online: 10 Jul 2009

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Elisabeth G Celius, Heidi Thompson, Maija Pontaga, Dawn Langdon, Alice Laroni, Stanca Potra, Trishna Bharadia, David Yeandle, Jane Shanahan, Pieter van Galen, Nektaria Alexandri & Jürg Kesselring. (2021) Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives. Patient Preference and Adherence 15, pages 15-27.
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Stéphane Mathis, Philippe Couratier, Adrien Julian, Jean-Michel Vallat, Philippe Corcia & Gwendal Le Masson. (2017) Management and therapeutic perspectives in amyotrophic lateral sclerosis. Expert Review of Neurotherapeutics 17:3, pages 263-276.
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Kerri L. Schellenberg, Susie J. Schofield, Shoufan Fang & Wendy S. W. Johnston. (2014) Breaking bad news in amyotrophic lateral sclerosis: The need for medical education. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 15:1-2, pages 47-54.
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Francesco Pagnini. (2013) Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: A review. International Journal of Psychology 48:3, pages 194-205.
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Anne Hogden, David Greenfield, Peter Nugus & Matthew C Kiernan. (2012) Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals. Patient Preference and Adherence 6, pages 691-701.
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Mary R. O'Brien, Bridget Whitehead, Barbara A. Jack & John Douglas Mitchell. (2011) From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): Experiences of people with ALS/MND and family carers – a qualitative study. Amyotrophic Lateral Sclerosis 12:2, pages 97-104.
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Martin Johannes Fegg, Monika Kögler, Monika Brandstätter, Ralf Jox, Johanna Anneser, Sigrid Haarmann-Doetkotte, Maria Wasner & Gian Domenico Borasio. (2010) Meaning in life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis 11:5, pages 469-474.
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Kerri Schellenberg, Richard Bedlack & Debara Tucci. (2010) Roaring in the ears: Patulous Eustachian tube in bulbar amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis 11:4, pages 395-396.
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Articles from other publishers (27)

Shelagh K. Genuis, Westerly Luth, Tania Bubela & Wendy S. Johnston. (2023) What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project . Muscle & Nerve 68:3, pages 286-295.
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Mario B. PradoJrJr, Geohanna Hamoy-Jimenez & Karen Joy Adiao. (2023) Characteristic and management motor neuron disease in the largest tertiary hospital in the Philippines: A one-year period cross sectional analytic study. Journal of Clinical Neuroscience 112, pages 68-72.
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Claudia C. Kitz, Laurie J. Barclay & Heiko Breitsohl. (2023) The delivery of bad news: An integrative review and path forward. Human Resource Management Review, pages 100971.
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Paolo Bongioanni, Gian Domenico Borasio, David J Oliver, Andrea Romagnoli, Karl P Kapitza, Katie Sidle & Francesco Tramonti. (2023) Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis. Cochrane Database of Systematic Reviews 2023:2.
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Mary R. O'Brien, Christopher McDermott, Samar Aoun, David Oliver & Jennifer A. Kirton. (2023) The diagnostic experience for people with MND and their caregivers in the U.K.. Journal of the Neurological Sciences 444, pages 120483.
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Stanisław Maksymowicz, Maria Libura & Paulina Malarkiewicz. (2022) Overcoming therapeutic nihilism. Breaking bad news of amyotrophic lateral sclerosis—a patient-centred perspective in rare diseases. Neurological Sciences 43:7, pages 4257-4265.
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Stuart Cleary, John E. Misiaszek, Sonya Wheeler, Sanjay Kalra, Shelagh K. Genuis & Wendy S. Johnston. (2021) Lung volume recruitment improves volitional airway clearance in amyotrophic lateral sclerosis. Muscle & Nerve 64:6, pages 676-682.
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Jacqueline Gillespie, Antoine Przybylak-Brouillard & Christine L Watt. (2021) The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review. Journal of Pain and Symptom Management 62:4, pages 848-862.
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Shelagh K. Genuis, Westerly Luth, Sandra Campbell, Tania Bubela & Wendy S. Johnston. (2021) Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence. Frontiers in Neurology 12.
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Remko M. van Eenennaam, Willeke J. Kruithof, Michael A. van Es, Esther T. Kruitwagen-van Reenen, Henk-Jan Westeneng, Johanna M. A. Visser-Meily, Leonard H. van den Berg & Anita Beelen. (2020) Discussing personalized prognosis in amyotrophic lateral sclerosis: development of a communication guide. BMC Neurology 20:1.
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Antje A Seeber, A Jeannette Pols, Albert Hijdra, Hepke F Grupstra, Dick L Willems & Marianne de Visser. (2019) Experiences and reflections of patients with motor neuron disease on breaking the news in a two-tiered appointment: a qualitative study. BMJ Supportive & Palliative Care 9:1, pages e8-e8.
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Anneli Ozanne & Ulla H. Graneheim. (2018) Understanding the incomprehensible - patients’ and spouses’ experiences of comprehensibility before, at and after diagnosis of amyotrophic lateral sclerosis. Scandinavian Journal of Caring Sciences 32:2, pages 663-671.
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Margaret O'Connor, Samar M. Aoun & Lauren J. Breen. (2018) Australian family carer responses when a loved one receives a diagnosis of Motor Neurone Disease-“Our life has changed forever”. Health & Social Care in the Community 26:3, pages e415-e421.
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Samar M. Aoun, Mary R. O'Brien, Lauren J. Breen & Margaret O'Connor. (2018) ‘The shock of diagnosis’: Qualitative accounts from people with Motor Neurone Disease reflecting the need for more person-centred care. Journal of the Neurological Sciences 387, pages 80-84.
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Vittorio Govoni, Elena Della Coletta, Edward Cesnik, Ilaria Casetta & Enrico Granieri. (2016) Can the age at onset give a clue to the pathogenesis of ALS?. Acta Neurologica Belgica 117:1, pages 221-227.
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Ralf J. Jox. 2017. Angewandte Ethik in der Neuromedizin. Angewandte Ethik in der Neuromedizin 201 211 .
Andrew Eisen & Charles Krieger. (2013) Ethical considerations in the management of amyotrophic lateral sclerosis. Progress in Neurobiology 110, pages 45-53.
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Amanda Pavey, Jacquelyn Allen-Collinson & Toby Pavey. (2013) The Lived Experience of Diagnosis Delivery in Motor Neurone Disease: A Sociological-Phenomenological Study. Sociological Research Online 18:2, pages 36-47.
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Samar M Aoun, Brenda Bentley, Laura Funk, Chris Toye, Gunn Grande & Kelli J Stajduhar. (2012) A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions. Palliative Medicine 27:5, pages 437-446.
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Gian Domenico Borasio. (2013) The role of palliative care in patients with neurological diseases. Nature Reviews Neurology 9:5, pages 292-295.
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Samar M Aoun, Sianne Lee Connors, Lynn Priddis, Lauren J Breen & Sue Colyer. (2011) Motor Neurone Disease family carers’ experiences of caring, palliative care and bereavement: An exploratory qualitative study. Palliative Medicine 26:6, pages 842-850.
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Vittorio Govoni, Edward Cesnik, Ilaria Casetta, Valeria Tugnoli, Maria Rosaria Tola & Enrico Granieri. (2012) Temporal trend of amyotrophic lateral sclerosis incidence in southern Europe: a population study in the health district of Ferrara, Italy. Journal of Neurology 259:8, pages 1623-1631.
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A. Storstein. (2011) Communication and neurology - bad news and how to break them. Acta Neurologica Scandinavica 124, pages 5-11.
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Abbey R. Roach, Alyssa J. Averill, Suzanne C. Segerstrom & Edward J. Kasarskis. (2009) The Dynamics of Quality of Life in ALS Patients and Caregivers. Annals of Behavioral Medicine 37:2, pages 197-206.
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Paolo Bongioanni, Gian Domenico Borasio, David Oliver, Francesco Tramonti, Andrea Romagnoli & Karl P Kapitza. (2009) Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis. Cochrane Database of Systematic Reviews.
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A. Chiò, A. Montuschi, S. Cammarosano, S. De Mercanti, E. Cavallo, A. Ilardi, P. Ghiglione, R. Mutani & A. Calvo. (2007) ALS patients and caregivers communication preferences and information seeking behaviour. European Journal of Neurology 0:0, pages 071116221701004-???.
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P. Couratier, J.C. Desport, F. Torny & M. Lacoste. (2006) Modalités et contenu de l’annonce du diagnostic de sclérose latérale amyotrophique sporadique. Revue Neurologique 162, pages 108-112.
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