358
Views
3
CrossRef citations to date
0
Altmetric
Clinical

Characteristics of pain and the burden it causes in patients with amyotrophic lateral sclerosis – a longitudinal study

, , , , , , , , & show all
Pages 284-291 | Received 24 May 2021, Accepted 27 Jul 2021, Published online: 14 Aug 2021

References

  • Kollewe K, Mauss U, Krampfl K, Petri S, Dengler R, Mohammadi B. ALSFRS-R score and its ratio: a useful predictor for ALS-progression. J Neurol Sci. 2008;275:69–73.
  • Newrick PG, Langton-Hewer R. Pain in motor neuron disease. J Neurol Neurosurg Psychiatry. 1985;48:838–40.
  • O'Brien T, Kelly M, Saunders C. Motor neuron disease: a hospice perspective. Br Med J. 1992;304:471–3.
  • Oliver D. The quality of care and symptom control – the effects on the terminal phase of ALS/MND. J Neurol Sci. 1996;139:134–6.
  • Handy CA, Krudy C, Boulis N, Federici T. Pain in amyotrophic lateral sclerosis: a neglected aspect of disease. Neurol Res Int. 2011;2011:403808.
  • Wicks P. Reassessing received wisdom in ALS-pain is common when studied systematically. Eur J Neurol. 2012;19:531–2.
  • 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;17:21–9.
  • Chiò 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;19:551–5.
  • Wallace VCJ, 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;15:520–7.
  • Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology. 1999;52:1434–40.
  • Hanisch F, Skudlarek A, Berndt J, Kornhuber ME. Characteristics of pain in amyotrophic lateral sclerosis. Brain Behav. 2015;5:e00296.
  • Ishida N, Hongo S, Kumano A, Hatta H, Zakoji N, Hirutani M, et al. Relationship between pain and functional status in patients with amyotrophic lateral sclerosis: a multicenter cross-sectional study. J Palliat Med. 2018;21:588–91.
  • Chiò A, Mora G, Lauria G. Pain in amyotrophic lateral sclerosis. Lancet Neurol. 2017;16:144–57.
  • Pagnini F, Lunetta C, Banfi P, Rossi G, Fossati F, Marconi A, et al. Pain in amyotrophic lateral sclerosis: a psychological perspective. Neurol Sci. 2012;33:1193–6.
  • Caress JB, Ciarlone SL, Sullivan EA, Griffin LP, Cartwright MS. Natural history of muscle cramps in amyotrophic lateral sclerosis. Muscle Nerve. 2016;53:513–7.
  • Raheja D, Stephens HE, Lehman E, Walsh S, Yang C, Simmons Z. Patient-reported problematic symptoms in an ALS treatment trial. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:198–205.
  • 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;5:439–49.
  • Orhan C, Van Looveren E, Cagnie B, Mukhtar NB, Lenoir D, Meeus M. Are pain beliefs, cognitions, and behaviors influenced by race, ethnicity, and culture in patients with chronic musculoskeletal pain: a systematic review. Pain Physician. 2018;21:541–58.
  • Hammer EM, Häcker S, Hautzinger M, Meyer TD, Kübler A. Validity of the ALS-Depression-Inventory (ADI-12)-a new screening instrument for depressive disorders in patients with amyotrophic lateral sclerosis. J Affect Disord. 2008;109:213–9.
  • Lulé D, Häcker S, Ludolph A, Birbaumer N, Kübler A. Depression and quality of life in patients with amyotrophic lateral sclerosis. Dtsch Arztebl Int. 2008;105:397–403.
  • Abdulla S, Vielhaber S, Kollewe K, Machts J, Heinze HJ, Dengler R, et al. The impact of physical impairment on emotional well-being in ALS. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:392–7.
  • 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;28:115–9.
  • Lopes LCG, Galhardoni R, Silva V, Jorge FMH, Yeng LT, Callegaro D, et al. Beyeond weakness: Characteriziation of pain, sensory profile and conditioned pain modulation in patients with motor neuron disease: a controlled study. Eur J Pain. 2018;22:72–83.
  • Brooks BR, Miller RG, Swash M, Munsat TL, World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
  • Turner MR, Wicks P, Brownstein CA, Massagli MP, Toronjo M, Talbot K, et al. Concordance between site of onset and limb dominance in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2011;82:853–4.
  • Roche JC, Rojas-Garcia R, Scott KM, Scotton W, Ellis CE, Burman R, et al. A proposed staging system for amyotrophic lateral sclerosis. Brain. 2012;135:847–52.
  • Wicks P, Massagli MP, Wolf C, Heywood J. Measuring function in advanced ALS: validation of ALSFRS-EX extension items . Eur J Neurol. 2009;16:353–9.
  • Abdulla S, Vielhaber S, Körner S, Machts J, Heinze HJ, Dengler R, et al. Validation of the German version of the extended ALS functional rating scale as a patient-reported outcome measure. J Neurol. 2013;260:2242–55.
  • Radbruch L, Loick G, Kiencke P, Lindena G, Sabatowski R, Grond S, et al. Validation of the German version of the Brief Pain Inventory. J Pain Symptom Manage. 1999;18:180–7.
  • Cohen J. Statistical power analysis for the behavioural sciences. Hillsdale: L Erlbaum Assoc, 1988.
  • Fillingim RB, Loeser JD, Baron R, Edwards RR. Assessment of chronic pain: Domains, methods, and mechanisms. J Pain. 2016;17:T10–20.
  • Stanhope J. Brief Pain Inventory review. Occup Med. 2016;66:496–7.
  • Brizzi KT, Bridges JFP, Yersak J, Balas C, Thakur N, Galvin M, et al. Understanding the needs of people with ALS: a national survey of patients and caregivers. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21:355–63.
  • 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 Front Degener. 2013;14:369–72.
  • Edge R, Mills R, Tennant A, Diggle PJ, Young CA, TONiC study group. 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. J Neurol. 2020;267:607–15.
  • Rabkin JG, Albert SM, Del Bene ML, O'Sullivan I, Tider T, Rowland LP, et al. Prevalence of depressive disorders and change over time in late-stage ALS. Neurology 2005;65:62–7.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.