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Original Article

The SEIQoL-DW for assessing quality of life in ALS: Strengths and limitations

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Pages 456-462 | Received 31 Jan 2008, Published online: 18 Nov 2009

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Jiří Kohout, Jan Šiška, Julie Beadle-Brown, Pavel Čáslava & Zuzana Truhlářová. (2022) Measuring the Perceived Importance of Indicators of the Quality of Social Care Services. Journal of Evidence-Based Social Work 19:3, pages 367-382.
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Hossein Matlabi & Sharareh Ahmadzadeh. (2017) Evaluation of individual quality of life among hemodialysis patients: nominated themes using SEIQoL-adapted. Patient Preference and Adherence 11, pages 1-9.
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Stephanie H. Felgoise, Vincenzo Zaccheo, Jason Duff & Zachary Simmons. (2016) Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 17:3-4, pages 179-183.
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Timothy Fullam, Helen E. Stephens, Stephanie H. Felgoise, Jacqueline K. Blessinger, Susan Walsh & Zachary Simmons. (2016) Compliance with recommendations made in a multidisciplinary ALS clinic. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 17:1-2, pages 30-37.
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Helen E. Stephens, Stephanie Felgoise, Jared Young & Zachary Simmons. (2015) Multidisciplinary ALS clinics in the USA: A comparison of those who attend and those who do not. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 16:3-4, pages 196-201.
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Zachary Simmons. (2014) Loss and well-being in ALS: A different perspective on the challenge. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 15:3-4, pages 163-164.
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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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Francesco Tramonti, Paolo Bongioanni, Carolina Di Bernardo, Sara Davitti & Bruno Rossi. (2012) Quality of life of patients with amyotrophic lateral sclerosis. Psychology, Health & Medicine 17:5, pages 621-628.
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Lorna Jane O'Doherty, Anne Hickey & Orla Hardiman. (2010) Measuring life quality, physical function and psychological well-being in neurological illness. Amyotrophic Lateral Sclerosis 11:5, pages 461-468.
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Jau-Shin Lou, Dan Moore, Paul H. Gordon & Robert Miller. (2010) Correlates of quality of life in ALS: Lessons from the minocycline study. Amyotrophic Lateral Sclerosis 11:1-2, pages 116-121.
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Faryal Zahir, Alicia Hanman, Nazmehr Yazdani, Sabrina La Rosa, Gemma Sleik, Brooke Sullivan, Ava Mehdipour, Selina Malouka & Ayse Kuspinar. (2023) Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review. Quality of Life Research 32:9, pages 2447-2462.
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Katarzyna Ciećwierska, Dorothée Lulé, Maksymilian Bielecki, Olga Helczyk, Anna Maksymowicz-Śliwińska, Julia Finsel, Krzysztof Nieporęcki, Peter M. Andersen, Albert C. Ludolph & Magdalena Kuźma-Kozakiewicz. (2023) Quality of life and depression in patients with amyotrophic lateral sclerosis – does the country of origin matter?. BMC Palliative Care 22:1.
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Maria Jose Sanchez-Andrades, Maria Jesus Vinolo-Gil, María Jesús Casuso-Holgado, Javier Barón-López, Manuel Rodríguez-Huguet & Rocío Martín-Valero. (2023) Measurement Properties of Self-Report Questionnaires for Amyotrophic Lateral Sclerosis: A Systematic Review and Meta-Analysis of Commonly Used Instruments. International Journal of Environmental Research and Public Health 20:4, pages 3310.
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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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Birgitta Jakobsson Larsson, Anneli Ozanne, Karin Nordin & Ingela Nygren. (2021) Quality of life among relatives of patients with amyotrophic lateral sclerosis: A prospective and longitudinal study. Palliative and Supportive Care 20:2, pages 203-211.
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Ylva Åkerblom, Lena Zetterberg, Birgitta Jakobsson Larsson, Dag Nyholm, Ingela Nygren & Pernilla Åsenlöf. (2021) Pain, disease severity and associations with individual quality of life in patients with motor neuron diseases. BMC Palliative Care 20:1.
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Francisco Velasco-Álvarez, Álvaro Fernández-Rodríguez, Francisco-Javier Vizcaíno-Martín, Antonio Díaz-Estrella & Ricardo Ron-Angevin. (2021) Brain–Computer Interface (BCI) Control of a Virtual Assistant in a Smartphone to Manage Messaging Applications. Sensors 21:11, pages 3716.
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Miriam Galvin, Tommy Gavin, Iain Mays, Mark Heverin & Orla Hardiman. (2020) Individual quality of life in spousal ALS patient-caregiver dyads. Health and Quality of Life Outcomes 18:1.
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Leila Bond, Gloria Bowen, Benjamin Mertens, Keelie Denson, Kathleen Jordan, Branislav Vidakovic & Cassie S. Mitchell. (2020) Associations of Patient Mood, Modulators of Quality of Life, and Pharmaceuticals with Amyotrophic Lateral Sclerosis Survival Duration. Behavioral Sciences 10:1, pages 33.
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Michael A. Elliott, Henrique Malvar, Lindsey L. Maassel, Jon Campbell, Harish Kulkarni, Irina Spiridonova, Noelle Sophy, Jay Beavers, Ann Paradiso, Chuck Needham, Jamie Rifley, Maggie Duffield, Jeremy Crawford, Becky Wood, Emily J. Cox & James M. Scanlan. (2019) Eye‐controlled, power wheelchair performs well for ALS patients. Muscle & Nerve 60:5, pages 513-519.
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Dorothée Lulé, Andrea Kübler & Albert C. Ludolph. (2019) Ethical Principles in Patient-Centered Medical Care to Support Quality of Life in Amyotrophic Lateral Sclerosis. Frontiers in Neurology 10.
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Stephanie H. Felgoise, Richard Feinberg, Helen E. Stephens, Paul Barkhaus, Kevin Boylan, James Caress, Lora L. Clawson, Lauren Elman, Stephen A. Goutman, Leo Mccluskey, James Russell, Ezgi Tiryaki, Michael Weiss & Zachary Simmons. (2018) Amyotrophic lateral sclerosis-specific quality of life-short form (ALSSQOL-SF): A brief, reliable, and valid version of the ALSSQOL-R. Muscle & Nerve 58:5, pages 646-654.
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Mariska J. Vansteensel, Erik J. Aarnoutse, Zac V. Freudenburg & Nick F. Ramsey. (2018) Een hersenimplantaat voor communicatie. Neuropraxis 22:3, pages 85-91.
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J. Caga, S. Hsieh, E. Highton-Williamson, M. C. Zoing, E. Ramsey, E. Devenney, R. M. Ahmed & M. C. Kiernan. (2017) Apathy and its impact on patient outcome in amyotrophic lateral sclerosis. Journal of Neurology 265:1, pages 187-193.
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B. Jakobsson Larsson, A. G. Ozanne, K. Nordin & I. Nygren. (2017) A prospective study of quality of life in amyotrophic lateral sclerosis patients. Acta Neurologica Scandinavica 136:6, pages 631-638.
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Pablo Martinez‐Martin. (2016) What is quality of life and how do we measure it? Relevance to Parkinson's disease and movement disorders. Movement Disorders 32:3, pages 382-392.
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Zeinab Hamidou, Karine Baumstarck, Olivier Chinot, Fabrice Barlesi, Sébastien Salas, Tanguy Leroy & Pascal Auquier. (2017) Domains of quality of life freely expressed by cancer patients and their caregivers: contribution of the SEIQoL. Health and Quality of Life Outcomes 15:1.
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C. Lucchiari, A. Botturi, A. Silvani, E. Lamperti, P. Gaviani, A. Innocenti, C. Y. Finocchiaro, M. Masiero & G. Pravettoni. (2015) Cognitive strategies and quality of life of patients with high-grade glioma. Supportive Care in Cancer 23:12, pages 3427-3435.
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Johann R. Kleinbub, Arianna Palmieri, Alice Broggio, Francesco Pagnini, Enrico Benelli, Marco Sambin & Gianni Sorarù. (2015) Hypnosis-based psychodynamic treatment in ALS: a longitudinal study on patients and their caregivers. Frontiers in Psychology 6.
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Sheelah Connolly, Miriam Galvin & Orla Hardiman. (2015) End-of-life management in patients with amyotrophic lateral sclerosis. The Lancet Neurology 14:4, pages 435-442.
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Zachary Simmons. (2014) Patient-Perceived Outcomes and Quality of Life in ALS. Neurotherapeutics 12:2, pages 394-402.
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Joseph C. Arezzo, Shirley Seto & Herbert H. Schaumburg. 2013. Peripheral Nerve Disorders. Peripheral Nerve Disorders 265 278 .
Zachary Simmons. 2013. Neurological Rehabilitation. Neurological Rehabilitation 483 498 .
Ted M. Burns, Christopher D. Graham, Michael R. Rose & Zachary Simmons. (2012) Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle & Nerve 46:1, pages 9-25.
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Dorothée Lulé, Sandra Pauli, Ertan Altintas, Ulrike Singer, Thomas Merk, Ingo Uttner, Niels Birbaumer & Albert C. Ludolph. (2011) Emotional adjustment in amyotrophic lateral sclerosis (ALS). Journal of Neurology 259:2, pages 334-341.
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Orla Hardiman, Leonard H. van den Berg & Matthew C. Kiernan. (2011) Clinical diagnosis and management of amyotrophic lateral sclerosis. Nature Reviews Neurology 7:11, pages 639-649.
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Louisa Ng, Paul Talman & Fary Khan. (2011) Neuropsychological sequelae in motor neurone disease: outcomes of a peer support programme. International Journal of Therapy and Rehabilitation 18:8, pages 429-437.
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. (2011) What's in the Literature?. Journal of Clinical Neuromuscular Disease 12:4, pages 248-254.
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Mark B. Bromberg. 2011. Quality of Life Measurement in Neurodegenerative and Related Conditions. Quality of Life Measurement in Neurodegenerative and Related Conditions 174 187 .
Crispin Jenkinson. 2011. Quality of Life Measurement in Neurodegenerative and Related Conditions. Quality of Life Measurement in Neurodegenerative and Related Conditions 41 51 .
Anneli G. Olsson, Inga Markhede, Susann Strang & Lennart I. Persson. (2010) Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin. Palliative and Supportive Care 8:1, pages 75-82.
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