Tiryaki E, Horak HA. ALS and other motor neuron diseases. Continuum (Minneapolis, Minn). 2014;20(5 Peripheral Nervous System Disorders):1185–207.
Lopes LCG, Galhardoni R, Silva V, Jorge FMH, Yeng LT, Callegaro D, et al. Beyond weakness: characterization of pain, sensory profile and conditioned pain modulation in patients with motor neuron disease: a controlled study. Eur J Pain. 2018;22(1):72–83.
Logroscino G, Piccininni M. Amyotrophic lateral sclerosis descriptive epidemiology: the origin of geographic difference. Neuroepidemiology. 2019;52(1-2):93–103.
Wood-Allum C, Shaw PJ. Motor neurone disease: a practical update on diagnosis and management. Clin Med. 2010;10(3):252–8.
Statland JM, Barohn RJ, Dimachkie MM, Floeter MK, Mitsumoto H. Primary lateral sclerosis. Neurol Clin. 2015;33(4):749–60.
Sepulveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: the World Health Organization’s global perspective. J Pain Symptom Manag. 2002;24(2):91–6.
Hanisch F, Skudlarek A, Berndt J, Kornhuber ME. Characteristics of pain in amyotrophic lateral sclerosis. Brain Behav. 2015;5(3):e00296.
Chio A, Canosa A, Gallo S, Moglia C, Ilardi A, Cammarosano S, et al. Pain in amyotrophic lateral sclerosis: a population-based controlled study. Eur J Neurol. 2012;19(4):551–5.
Stephens HE, Lehman E, Raheja D, Yang C, Walsh S, McArthur DB, et al. Pain in amyotrophic lateral sclerosis: patient and physician perspectives and practices. Amyotroph Lateral Scler Frontotemporal Degener. 2015;17(1-2):21–9.
Wallace VC, Ellis CM, Burman R, Knights C, Shaw CE, Al-Chalabi A. The evaluation of pain in amyotrophic lateral sclerosis: a case controlled observational study. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15(7-8):520–7.
Pizzimenti A, Aragona M, Onesti E, Inghilleri M. Depression, pain and quality of life in patients with amyotrophic lateral sclerosis: a cross-sectional study. Funct Neurol. 2013;28(2):115–9.
Rivera I, Ajroud-Driss S, Casey P, Heller S, Allen J, Siddique T, et al. Prevalence and characteristics of pain in early and late stages of ALS. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14(5-6):369–72.
Sandstedt P, Littorin S, Johansson S, Gottberg K, Ytterberg C, Kierkegaard M. Disability and contextual factors in patients with amyotrophic lateral sclerosis – a three-year observational study. J Neuromuscul Dis. 2018;5(4):439–49.
World Health O. Cancer control: knowledge into action : WHO guide for effective programmes. Geneva: WHO; 2006.
Brettschneider J, Kurent J, Ludolph A. Drug therapy for pain in amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database Syst Rev. 2008;(3):CD005226. https://doi.org/10.1002/14651858.CD005226.pub2.
Maggiani A, Tremolizzo L, Della Valentina A, Mapelli L, Sosio S, Milano V, et al. Osteopathic manual treatment for amyotrophic lateral sclerosis: a feasibility pilot study. Open Neurol J. 2016;10:59–66.
Green S, Buchbinder R, Hetrick S. Physiotherapy interventions for shoulder pain. Cochrane Database Syst Rev. 2003;(2):CD004258. https://doi.org/10.1002/14651858.CD004258.
Green S, Buchbinder R, Hetrick S. Acupuncture for shoulder pain. Cochrane Database Syst Rev. 2005;(2):CD005319. https://doi.org/10.1002/14651858.CD005319.
Chio A, Mora G, Lauria G. Pain in amyotrophic lateral sclerosis. Lancet Neurol. 2017;16(2):144–57.
Testa MA, Simonson DC. Assessment of quality-of-life outcomes. N Engl J Med. 1996;334(13):835–40.
Simmons Z. Patient-perceived outcomes and quality of life in ALS. Neurotherapeutics. 2015;12(2):394–402.
Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–83.
Prell T, Gaur N, Stubendorff B, Rodiger A, Witte OW, Grosskreutz J. Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis. J Neurol Sci. 2019;397:92–5.
Sandstedt P, Johansson S, Ytterberg C, Ingre C, Holmqvist LW, Kierkegaard M. Predictors of health-related quality of life in people with amyotrophic lateral sclerosis. J Neurol Sci. 2016;370:269–73.
Burns TM, Graham CD, Rose MR, Simmons Z. Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle Nerve. 2012;46(1):9–25.
Hickey AM, Bury G, O’Boyle CA, Bradley F, O’Kelly FD, Shannon W. A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ. 1996;313(7048):29–33.
Chio A, Gauthier A, Montuschi A, Calvo A, Di Vito N, Ghiglione P, et al. A cross sectional study on determinants of quality of life in ALS. J Neurol Neurosurg Psychiatry. 2004;75(11):1597–601.
Goldstein LH, Atkins L, Leigh PN. Correlates of quality of life in people with motor neuron disease (MND). Amyotroph Lateral Scler Other Motor Neuron Disord. 2002;3(3):123–9.
Felgoise SH, Stewart JL, Bremer BA, Walsh SM, Bromberg MB, Simmons Z. The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations. Amyotroph Lateral Scler. 2009;10(5-6):456–62.
Jakobsson Larsson B, Ozanne AG, Nordin K, Nygren I. A prospective study of quality of life in amyotrophic lateral sclerosis patients. Acta Neurol Scand. 2017;136(6):631–8.
Olsson AG, Markhede I, Strang S, Persson LI. Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin. Palliat Support Care. 2010;8(1):75–82.
Neudert C, Wasner M, Borasio GD. Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. J Palliat Med. 2004;7(4):551–7.
Tramonti F, Bongioanni P, Di Bernardo C, Davitti S, Rossi B. Quality of life of patients with amyotrophic lateral sclerosis. Psychol Health Med. 2012;17(5):621–8.
Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology. 1999;52(7):1434–40.
Querin G, Soraru G, Pradat PF. Kennedy disease (X-linked recessive bulbospinal neuronopathy): a comprehensive review from pathophysiology to therapy. Rev Neurol (Paris). 2017;173(5):326–37.
Wettergren L, Bjorkholm M, Axdorph U, Bowling A, Langius-Eklof A. Individual quality of life in long-term survivors of Hodgkin’s lymphoma–a comparative study. Qual Life Res. 2003;12(5):545–54.
Wettergren L, Bjorkholm M, Langius-Eklof A. Validation of an extended version of the SEIQoL-DW in a cohort of Hodgkin lymphoma’ survivors. Qual Life Res. 2005;14(10):2329–33.
Wettergren L, Kettis-Lindblad A, Sprangers M, Ring L. The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW. Qual Life Res. 2009;18(6):737–46.
Neudert C, Oliver D, Wasner M, Borasio GD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001;248(7):612–6.
Cleeland CS, Ryan KM. Pain assessment: global use of the brief pain inventory. Ann Acad Med Singap. 1994;23(2):129–38.
Cleeland CS. The brief pain inventory: user guide. Houston; 2009. Available from: https://www.mdanderson.org/documents/…/BPI_UserGuide.pdf. Cited 21 Aug 2017.
Hoffman DL, Sadosky A, Dukes EM, Alvir J. How do changes in pain severity levels correspond to changes in health status and function in patients with painful diabetic peripheral neuropathy? Pain. 2010;149(2):194–201.
de Andres Ares J, Cruces Prado LM, Canos Verdecho MA, Penide Villanueva L, Del Valle Hoyos M, Herdman M, et al. Validation of the short form of the brief pain inventory (BPI-SF) in Spanish patients with non-cancer-related pain. Pain Pract. 2015;15(7):643–53.
Naegeli AN, Tomaszewski EL, Al Sawah S. Psychometric validation of the brief pain inventory-short form in patients with systemic lupus erythematosus in the United States. Lupus. 2015;24(13):1377–83.
Celik EC, Yalcinkaya EY, Atamaz F, Karatas M, Ones K, Sezer T, et al. Validity and reliability of a Turkish brief pain inventory short form when used to evaluate musculoskeletal pain. J Back Musculoskelet Rehabil. 2017;30(2):229–33.
Hoffman AJ, Jensen MP, Abresch RT, Carter GT. Chronic pain in persons with neuromuscular disease. Phys Med Rehabil Clin N Am. 2005;16(4):1099–112 xii.
Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999;169(1-2):13–21.
Bouhassira D, Attal N, Fermanian J, Alchaar H, Gautron M, Masquelier E, et al. Development and validation of the neuropathic pain symptom inventory. Pain. 2004;108(3):248–57.
Hallström H, Norrbrink C. Screening tools for neuropathic pain: can they be of use in individuals with spinal cord injury? Pain. 2011;152(4):772–9.
Bakker LA, Schroder CD, van Es MA, Westers P, Visser-Meily JMA, van den Berg LH. Assessment of the factorial validity and reliability of the ALSFRS-R: a revision of its measurement model. J Neurol. 2017;264(7):1413–20.
Matuz T, Birbaumer N, Hautzinger M, Kubler A. Psychosocial adjustment to ALS: a longitudinal study. Front Psychol. 2015;6:1197.
Akerblom Y, Jakobsson Larsson B, Zetterberg L, Asenlof P. The multiple faces of pain in motor neuron disease: a qualitative study to inform pain assessment and pain management. Disabil Rehabil. 2020;42(15):2123–32.
Anderson M, Asnani M. “You just have to live with it”: coping with sickle cell disease in Jamaica. Qual Health Res. 2013;23(5):655–64.
Wijesekera LC, Mathers S, Talman P, Galtrey C, Parkinson MH, Ganesalingam J, et al. Natural history and clinical features of the flail arm and flail leg ALS variants. Neurology. 2009;72(12):1087–94.
Korner S, Kollewe K, Abdulla S, Zapf A, Dengler R, Petri S. Interaction of physical function, quality of life and depression in Amyotrophic lateral sclerosis: characterization of a large patient cohort. BMC Neurol. 2015;15:84.
Taminiau-Bloem EF, Visser MR, Tishelman C, Koeneman MA, van Zuuren FJ, Sprangers MA. Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies. Qual Life Res. 2010;19(2):253–91.
Pender N, Pinto-Grau M, Hardiman O. Cognitive and behavioural impairment in amyotrophic lateral sclerosis. Curr Opin Neurol. 2020;33(5):649–54.
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