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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 20, 2019 - Issue 5-6
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Original Articles

The relationships between symptoms, disability, perceived health and quality of life in amyotrophic lateral sclerosis/motor neuron disease

Carolyn Anne YoungWalton Centre NHS Foundation Trust, University of Liverpool, Liverpool, UK, Correspondence[email protected]
ORCID Iconhttp://orcid.org/0000-0003-1745-7720View further author information
ORCID Icon,
John EalingDepartment of Neurology, Salford Royal Hospital Foundation Trust, Salford, UK, View further author information
,
Christopher McDermottDepartment of Neuroscience, University of Sheffield, Sheffield, UK, ORCID Iconhttp://orcid.org/0000-0002-1269-9053View further author information
ORCID Icon,
Tim WilliamsDepartment of Neurology, Royal Victoria Infirmary, Newcastle upon Tyne, UK, View further author information
,
Ammar Al-ChalabiDepartment of Clinical Neuroscience, Institute of Psychiatry, MRC Centre for Neurodegeneration Research, King's College London, London, UK, ORCID Iconhttp://orcid.org/0000-0002-4924-7712View further author information
ORCID Icon,
Tahir MajeedDepartment of Neurology, Lancashire Teaching Hospitals NHS Foundation Trust, Preston, UK, View further author information
,
Georgina BurkeWessex Neurological Centre, Southampton, UK, View further author information
,
Ashwin PintoWessex Neurological Centre, Southampton, UK, View further author information
,
David DickDepartment of Neurology, Norfolk and Norwich University Hospital, Norwich, UK, View further author information
,
Kevin TalbotNuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital, Oxford, UK, View further author information
,
Timothy HarrowerDepartment of Neurology, Royal Devon & Exeter Foundation Trust Hospital, Exeter, UK, View further author information
,
Jannette WalshStaffordshire and Stoke on Trent Partnership NHS Trust, Stoke-on-Trent, UK, View further author information
,
Siddharthan ChandranDepartment of Neurology, Royal Infirmary of Edinburgh, Edinburgh, UK, View further author information
,
C. Oliver HanemannPlymouth University Peninsula Schools of Medicine and Dentistry, Plymouth, UK, and View further author information
,
Roger MillsWalton Centre NHS Foundation Trust, University of Liverpool, Liverpool, UK, View further author information
&
Alan TennantSwiss Paraplegic Research, Nottwil, SwitzerlandView further author information
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Pages 317-327 | Received 04 Feb 2019, Accepted 02 May 2019, Published online: 22 May 2019

Citations (25)

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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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Carolyn Young, John Ealing, Christopher McDermott, Tim Williams, Ammar Al-Chalabi, Tahir Majeed, Rhys Roberts, Roger Mills & Alan Tennant. (2022) Fatigue and anxiety mediate the effect of dyspnea on quality of life in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 23:5-6, pages 390-398.
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Carolyn Young, Susana Pinto, Julian Grosskreutz, Orla Hardiman, Lora L. Clawson, Merit E. Cudkowicz & Jinsy A. Andrews. (2022) Medical therapies for amyotrophic lateral sclerosis-related respiratory decline: an appraisal of needs, opportunities and obstacles. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 23:1-2, pages 66-75.
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Adriano Chiò, Antonio Canosa, Andrea Calvo, Cristina Moglia, Alessandro Cicolin & Gabriele Mora. (2021) Developments in the assessment of non-motor disease progression in amyotrophic lateral sclerosis. Expert Review of Neurotherapeutics 21:12, pages 1419-1440.
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Deirdre Murray, James Rooney, Amar Al-Chalabi, Tommy Bunte, Theresa Chiwera, Mutahhara Choudhury, Adriano Chio, Lauren Fenton, Jennifer Fortune, Lindsay Maidment, Umberto Manera, Chris Mcdermott, Dara Meldrum, Myrte Meyjes, Rachel Tattersall, Maria Claudia Torrieri, Philip Van Damme, Elien Vanderlinden, Claire Wood, Leonard H. Van Den Berg & Orla Hardiman. (2021) Correlations between measures of ALS respiratory function: is there an alternative to FVC?. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:7-8, pages 495-504.
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Kate T. Brizzi, John F. P. Bridges, Jill Yersak, Calaneet Balas, Neil Thakur, Miriam Galvin, Orla Hardiman, Chad Heatwole, John Ravits, Zachary Simmons, Lucie Bruijn, James Chan, Richard Bedlack & James D. Berry. (2020) Understanding the needs of people with ALS: a national survey of patients and caregivers. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:5-6, pages 355-363.
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Articles from other publishers (19)

Birgitta Jakobsson Larsson, Karin Nordin & Ingela Nygren. (2023) Symptoms of anxiety and depression in patients with amyotrophic lateral sclerosis and their relatives during the disease trajectory. Journal of the Neurological Sciences 455, pages 122780.
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Kelly G. Gwathmey, Philippe Corcia, Chris J. McDermott, Angela Genge, Stefan Sennfält, Mamede de Carvalho & Caroline Ingre. (2023) Diagnostic delay in amyotrophic lateral sclerosis. European Journal of Neurology 30:9, pages 2595-2601.
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Alan Tennant & Ayse A. Küçükdeveci. (2023) Application of the Rasch measurement model in rehabilitation research and practice: early developments, current practice, and future challenges. Frontiers in Rehabilitation Sciences 4.
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Giovanni Gerardo Muscolo, Francesca Di Pede, Luca Solero, Angelo Nicolì, Alessandra Russo, Paolo Fiorini, Adriano Chiò, Andrea Calvo & Antonio Canosa. (2023) Conceptual design of a biped-wheeled wearable machine for ALS patients. Journal of Neurology 270:7, pages 3632-3636.
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Benjamin Ziegeler, Wendyl D’ Souza, Anita Vinton, Sarah Mulukutla, Cameron Shaw & Ross Carne. (2022) Neurological Health: Not Merely the Absence of Disease: Current Wellbeing Instruments Across the Spectrum of Neurology. American Journal of Lifestyle Medicine 17:2, pages 299-316.
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André Maier, Christoph Münch & Thomas Meyer. (2023) Der Einsatz von Patient-reported Outcome Measures (PROM) und die Perspektive digitaler Biomarker bei der Amyotrophen Lateralsklerose. Klinische Neurophysiologie 54:01, pages 28-34.
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Brittany Lapin, Kedar Mate, Yadi Li & Nimish Thakore. (2022) Subjective health perception prioritizes psychological well-being over physical function in advanced ALS: A multigroup structural equation modeling analysis. Journal of the Neurological Sciences 442, pages 120442.
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Elisa Aust, Katharina Linse, Sven-Thomas Graupner, Markus Joos, Daniel Liebscher, Julian Grosskreutz, Johannes Prudlo, Thomas Meyer, René Günther, Sebastian Pannasch & Andreas Hermann. (2022) Quality of life and mental health in the locked-in-state—differences between patients with amyotrophic lateral sclerosis and their next of kin. Journal of Neurology 269:11, pages 5910-5925.
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Mariana Asmar Alencar, Bruna Laura Soares, Marcela Ferreira de Andrade Rangel, Juliana Silva Abdo, Rayane Alves Pereira de Almeida, Caroline Martins de Araújo, Leonardo Cruz de Souza & Gisele de Cássia Gomes. (2022) Fatigue in amyotrophic lateral sclerosis and correlated factors. Arquivos de Neuro-Psiquiatria 80:10, pages 1045-1051.
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Mariana Asmar Alencar, Izaura Monique Moura da Silva, Stéfanie Marcelle Hilário, Marcela Ferreira de Andrade Rangel, Juliana Silva Abdo, Caroline Martins de Araújo & Leonardo Cruz de Souza. (2022) Quality of life, disability, and clinical variables in amyotrophic lateral sclerosis. Arquivos de Neuro-Psiquiatria 80:3, pages 255-261.
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Morgan HardyCaitlin CastleCarlayne Jackson. (2022) Embedded Psychiatric Services in a Multidisciplinary Amyotrophic Lateral Sclerosis Clinic: An Assessment of Patient Needs and Perceptions. The Journal of Neuropsychiatry and Clinical Neurosciences 34:1, pages 53-59.
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Suzanne Simpson, Moira Furlong & Clarissa Giebel. (2021) Exploring the enablers and barriers to social prescribing for people living with long-term neurological conditions: a focus group investigation. BMC Health Services Research 21:1.
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Soumia Benbrika, Franck Doidy, Laurence Carluer, Audrey Mondou, Alice Pélerin, Francis Eustache, Fausto Viader & Béatrice Desgranges. (2021) Longitudinal Study of Cognitive and Emotional Alterations in Amyotrophic Lateral Sclerosis: Clinical and Imaging Data. Frontiers in Neurology 12.
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Anna Markella Antoniadi, Miriam Galvin, Mark Heverin, Orla Hardiman & Catherine Mooney. (2021) Prediction of quality of life in people with ALS. ACM SIGAPP Applied Computing Review 21:2, pages 5-17.
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Anna Markella Antoniadi, Miriam Galvin, Mark Heverin, Orla Hardiman & Catherine Mooney. (2021) Development of an explainable clinical decision support system for the prediction of patient quality of life in amyotrophic lateral sclerosis. Development of an explainable clinical decision support system for the prediction of patient quality of life in amyotrophic lateral sclerosis.
Filipe Emanuel Oliveira de Almeida, Anne Kelly do Carmo Santana & Fernanda Oliveira de Carvalho. (2021) Multidisciplinary care in Amyotrophic Lateral Sclerosis: a systematic review and meta-analysis. Neurological Sciences 42:3, pages 911-923.
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Suzanne Simpson, Sandra Smith, Moira Furlong, Janet Ireland & Clarissa Giebel. (2020) Supporting access to activities to enhance well‐being and reduce social isolation in people living with motor neurone disease. Health & Social Care in the Community 28:6, pages 2282-2289.
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Rhiannon Edge, Roger Mills, Alan Tennant, Peter J. Diggle & Carolyn A. Young. (2019) Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature. Journal of Neurology 267:3, pages 607-615.
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Alessandra Ferri, Francesca Lanfranconi, Giovanni Corna, Riccardo Bonazzi, Samuele Marchese, Andrea Magnoni & Lucio Tremolizzo. (2019) Tailored Exercise Training Counteracts Muscle Disuse and Attenuates Reductions in Physical Function in Individuals With Amyotrophic Lateral Sclerosis. Frontiers in Physiology 10.
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