ALS follows a progressive course without intervals of remissions, relapses, or stabilization, causing progressive disability and ultimately death. The disease is highly variable between affected individuals in terms of clinical presentation and time course. Median survival is 3-5 years, but survival for up to 10 years and even beyond (in approximately 10% to 20% of patients) has been reported.[21]van Es MA, Hardiman O, Chio A, et al. Amyotrophic lateral sclerosis. Lancet. 2017 Nov 4;390(10107):2084-98.
http://www.ncbi.nlm.nih.gov/pubmed/28552366?tool=bestpractice.com
[122]Turner MR, Parton MJ, Shaw CE, et al. Prolonged survival in motor neuron disease: a descriptive study of the King's database 1990-2002. J Neurol Neurosurg Psychiatry. 2003 Jul;74(7):995-7.
https://jnnp.bmj.com/content/74/7/995
http://www.ncbi.nlm.nih.gov/pubmed/12810805?tool=bestpractice.com
[123]Chiò A, Logroscino G, Hardiman O, et al; Eurals Consortium. Prognostic factors in ALS: a critical review. Amyotroph Lateral Scler. 2009 Oct-Dec;10(5-6):310-23.
http://www.ncbi.nlm.nih.gov/pubmed/19922118?tool=bestpractice.com
Prognostic factors
Prognostic factors associated with more prolonged survival include:
Treatment with noninvasive ventilation (NIV)[123]Chiò A, Logroscino G, Hardiman O, et al; Eurals Consortium. Prognostic factors in ALS: a critical review. Amyotroph Lateral Scler. 2009 Oct-Dec;10(5-6):310-23.
http://www.ncbi.nlm.nih.gov/pubmed/19922118?tool=bestpractice.com
Enteral nutrition[84]Katzberg, HD, Benatar M. Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev. 2011 Jan 19;(1):CD004030.
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004030.pub3/full
http://www.ncbi.nlm.nih.gov/pubmed/21249659?tool=bestpractice.com
Younger age at diagnosis[124]Eisen A, Schulzer M, MacNeil M, et al. Duration of amyotrophic lateral sclerosis is age dependent. Muscle Nerve. 1993 Jan;16(1):27-32.
http://www.ncbi.nlm.nih.gov/pubmed/8423829?tool=bestpractice.com
[125]Spencer KR, Foster ZW, Rauf NA, et al. Neuropathological profile of long-duration amyotrophic lateral sclerosis in military veterans. Brain Pathol. 2020 Nov;30(6):1028-40.
https://onlinelibrary.wiley.com/doi/epdf/10.1111/bpa.12876
http://www.ncbi.nlm.nih.gov/pubmed/32633852?tool=bestpractice.com
Limb onset[124]Eisen A, Schulzer M, MacNeil M, et al. Duration of amyotrophic lateral sclerosis is age dependent. Muscle Nerve. 1993 Jan;16(1):27-32.
http://www.ncbi.nlm.nih.gov/pubmed/8423829?tool=bestpractice.com
[126]Czaplinski A, Yen AA, Appel SH. Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population. J Neurol Neurosurg Psychiatry. 2006 Mar;77(3):390-2.
http://www.ncbi.nlm.nih.gov/pubmed/16484652?tool=bestpractice.com
Baseline forced vital capacity (FVC) of >75% (median survival 5 years)[126]Czaplinski A, Yen AA, Appel SH. Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population. J Neurol Neurosurg Psychiatry. 2006 Mar;77(3):390-2.
http://www.ncbi.nlm.nih.gov/pubmed/16484652?tool=bestpractice.com
Longer time from symptom onset to diagnosis.[125]Spencer KR, Foster ZW, Rauf NA, et al. Neuropathological profile of long-duration amyotrophic lateral sclerosis in military veterans. Brain Pathol. 2020 Nov;30(6):1028-40.
https://onlinelibrary.wiley.com/doi/epdf/10.1111/bpa.12876
http://www.ncbi.nlm.nih.gov/pubmed/32633852?tool=bestpractice.com
Prognostic factors associated with worse outcome include:
Older age at diagnosis
Bulbar onset
Comorbidity with frontotemporal dementia
Baseline FVC of <75%
Substantial weight loss.[127]Goutman SA, Boss J, Iyer G, et al. Body mass index associates with amyotrophic lateral sclerosis survival and metabolomic profiles. Muscle Nerve. 2022 Nov 2 [Epub ahead of print].
https://onlinelibrary.wiley.com/doi/10.1002/mus.27744
http://www.ncbi.nlm.nih.gov/pubmed/36321729?tool=bestpractice.com
The rate of symptom progression is considered to be an independent prognostic factor.[123]Chiò A, Logroscino G, Hardiman O, et al; Eurals Consortium. Prognostic factors in ALS: a critical review. Amyotroph Lateral Scler. 2009 Oct-Dec;10(5-6):310-23.
http://www.ncbi.nlm.nih.gov/pubmed/19922118?tool=bestpractice.com