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Original Articles

The initiation of non-invasive ventilation for patients with motor neuron disease: Patient and carer perceptions of obstacles and outcomes

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Pages 105-110 | Received 02 May 2012, Accepted 05 Aug 2012, Published online: 06 Sep 2012

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Eilis Conroy, Beatriz Vélez-Gómez, David O’Brien, Mark Heverin, Orla Hardiman, Christopher McDermott & Miriam Galvin. (2023) IMPACT-ALS: summary of results from a European survey of people living with ALS. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:7-8, pages 641-650.
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Christopher Poppe, Insa Koné, Luzia Margarete Iseli, Kathi Schweikert, Bernice Simone Elger & Tenzin Wangmo. (2020) Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:7-8, pages 519-541.
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Susan Kathryn Baxter, Maxine Johnson, Mark Clowes, David O’Brien, Paul Norman, Theocharis Stavroulakis, Stephen Bianchi, Mark Elliott, Christopher McDermott & Esther Hobson. (2019) Optimizing the noninvasive ventilation pathway for patients with amyotrophic lateral sclerosis/motor neuron disease: a systematic review. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 20:7-8, pages 461-472.
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Geraldine Foley & Geralyn Hynes. (2018) Decision-making among patients and their family in ALS care: a review. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 19:3-4, pages 173-193.
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David J Oliver. (2016) Palliative care for patients with motor neurone disease: current challenges. Degenerative Neurological and Neuromuscular Disease 6, pages 65-72.
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Susan Baxter, Heath Reed, Zoë Clarke, Simon Judge, Nicola Heron, Avril Mccarthy, Joe Langley, Andrew Stanton, Oliver Wells, Gill Squire, Ann Quinn, Mark Strong, Pamela J. Shaw & Christopher J. Mcdermott. (2016) Evaluating a novel cervical orthosis, the Sheffield Support Snood, in patients with amyotrophic lateral sclerosis/motor neuron disease with neck weakness. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 17:5-6, pages 436-442.
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Articles from other publishers (23)

Sean White, Alicia O'Cathain, Vanessa Halliday, Liz Croot & Christopher J. McDermott. (2023) Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis. Health Expectations 26:4, pages 1418-1435.
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Lucy S. Musson, Susan K. Baxter, Paul Norman, David O'Brien, Mark Elliott, Stephen Bianchi, Georgios Kaltsakas, Christopher J. McDermott, Theocharis Stavroulakis & Esther V. Hobson. (2023) Delivery of noninvasive ventilation to people living with motor neuron disease in the UK. ERJ Open Research 9:2, pages 00388-2022.
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Joanna Elverson, Hayley Evans & Felicity Dewhurst. (2023) Palliation, end of life care and ventilation withdrawal in neuromuscular disorders. Chronic Respiratory Disease 20, pages 147997312311759.
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Charlotte Chapman, Sara Bayes & Moira Sim. (2022) Communication surrounding initiation and withdrawal of non-invasive ventilation in adults with motor neurone disease. International Journal of Palliative Nursing 28:7, pages 298-306.
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Sarah K. Bublitz, Christiane Weck, Andrea Egger-Rainer, Katharina Lex, Piret Paal & Stefan Lorenzl. (2021) Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients. Frontiers in Neurology 12.
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Charlotte Chapman, Sara Bayes & Moira Sim. (2021) Communication surrounding initiation and withdrawal of non-invasive ventilation in adults with Motor Neuron(e) Disease: clinicians’ and family members’ perspectives. International Journal of Care Coordination 24:3-4, pages 96-106.
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Matthew Munan, Westerly Luth, Shelagh K. Genuis, Wendy S.W. Johnston & Erika MacIntyre. (2020) Transitions in Amyotrophic Lateral Sclerosis: Patient and Caregiver Experiences. Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques 48:4, pages 496-503.
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Jessica A. Cooksey & Amen Sergew. (2020) Noninvasive Ventilation in Amyotrophic Lateral Sclerosis. Sleep Medicine Clinics 15:4, pages 527-538.
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Kate Flemming, Victoria Turner, Samantha Bolsher, Bill Hulme, Elizabeth McHugh & Ian Watt. (2020) The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review. Palliative Medicine 34:6, pages 708-730.
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Martin Groß, Johannes Dorst & Kerstin Pelzer. 2020. Neurologische Beatmungsmedizin. Neurologische Beatmungsmedizin 193 246 .
Marina Iosifyan, Matthieu Schmidt, Amélie Hurbault, Julien Mayaux, Christian Delafosse, Marina Mishenko, Nathalie Nion, Alexandre Demoule & Thomas Similowski. (2019) “I had the feeling that I was trapped”: a bedside qualitative study of cognitive and affective attitudes toward noninvasive ventilation in patients with acute respiratory failure. Annals of Intensive Care 9:1.
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David O'Brien, Theocharis Stavroulakis, Susan Baxter, Paul Norman, Stephen Bianchi, Mark Elliott, Maxine Johnson, Mark Clowes, Aldara Garcia-Sánchez, Esther Hobson & Christopher McDermott. (2019) The optimisation of noninvasive ventilation in amyotrophic lateral sclerosis: a systematic review. European Respiratory Journal 54:3, pages 1900261.
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Jens Spiesshoefer, Maya Runte, Anna Heidbreder, Michael Dreher, Peter Young, Tobias Brix & Matthias Boentert. (2019) Sleep-disordered breathing and effects of non-invasive ventilation on objective sleep and nocturnal respiration in patients with myotonic dystrophy type I. Neuromuscular Disorders 29:4, pages 302-309.
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David J. Oliver. (2019) Palliative care in motor neurone disease: where are we now?. Palliative Care: Research and Treatment 12, pages 117822421881391.
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Johannes Dorst, Albert C. Ludolph & Annemarie Huebers. (2017) Disease-modifying and symptomatic treatment of amyotrophic lateral sclerosis. Therapeutic Advances in Neurological Disorders 11, pages 175628561773473.
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Aleksandar Radunovic, Djillali Annane, Muhammad K Rafiq, Ruth Brassington & Naveed Mustfa. (2017) Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database of Systematic Reviews 2018:6.
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Kay Phelps, Emma Regen, David Oliver, Chris McDermott & Christina Faull. (2017) Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK. BMJ Supportive & Palliative Care 7:2, pages 189-196.
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Hamadziripi Ngandu, Nichola Gale & Jane B. Hopkinson. (2016) Experiences of noninvasive ventilation in adults with hypercapnic respiratory failure: a review of evidence. European Respiratory Review 25:142, pages 451-471.
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Esther V. Hobson & Christopher J. McDermott. (2016) Supportive and symptomatic management of amyotrophic lateral sclerosis. Nature Reviews Neurology 12:9, pages 526-538.
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Stephen C Bourke & John Steer. (2016) Practical respiratory management in amyotrophic lateral sclerosis: evidence, controversies and recent advances. Neurodegenerative Disease Management 6:2, pages 147-160.
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Rebekah M. Ahmed, Rowena E.A. Newcombe, Amanda J. Piper, Simon J. Lewis, Brendon J. Yee, Matthew C. Kiernan & Ron R. Grunstein. (2016) Sleep disorders and respiratory function in amyotrophic lateral sclerosis. Sleep Medicine Reviews 26, pages 33-42.
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Sabrina Cipolletta & Linda Amicucci. (2015) The family experience of living with a person with amyotrophic lateral sclerosis: A qualitative study. International Journal of Psychology 50:4, pages 288-294.
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Hikari Ando, Biswajit Chakrabarti, Robert M Angus, Rosanna Cousins, Everard W Thornton & Carolyn A Young. (2014) Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis. BMJ Supportive & Palliative Care 4:1, pages 50-56.
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