Neuroprognostication for Patients with Amyotrophic Lateral Sclerosis: An Updated, Evidence-Based Review

被引:0
作者
Schaff, Christina Martin [1 ]
Kurent, Jerome E. [2 ,3 ]
Kolodziejczak, Sherry [4 ]
Milic, Michelle [5 ,6 ]
Foster, Laura A. [7 ]
Mehta, Ambereen K. [1 ,8 ,9 ]
机构
[1] Johns Hopkins Univ, Sch Med, Dept Neurol, Baltimore, MD USA
[2] Med Univ South Carolina, Dept Neurol & Med, Charleston, SC USA
[3] Ralph H Johnson Vet Affairs Med Ctr, Dept Neurol, ALS Multidisciplinary Clin, Charleston, SC USA
[4] ALS Clin Treatment Ctr Excellence, Crestwood Med Ctr, Huntsville, AL USA
[5] MedStar Georgetown Univ Hosp, Div Pulm Crit Care & Sleep Med, Washington, DC USA
[6] MedStar Georgetown Univ Hosp, Div Palliat Care Med, Washington, DC USA
[7] Univ Colorado, Sch Med, Dept Neurol, Aurora, CO USA
[8] Johns Hopkins Univ, Palliat Care Program, Div Med, Sch Med, Baltimore, MD USA
[9] Johns Hopkins Univ, Johns Hopkins Bayview Med Ctr, Sch Med, 5200 Eastern Ave, Baltimore, MD 21224 USA
关键词
ALS; prognosis; quality of life; palliative care; multidisciplinary clinic; ANTISENSE OLIGONUCLEOTIDE TOFERSEN; QUALITY-OF-LIFE; NONINVASIVE VENTILATION; UNITED-STATES; MULTIDISCIPLINARY CARE; SURVIVAL; ALS; PROGNOSIS; PREVALENCE; DISEASE;
D O I
10.1055/s-0043-1775595
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative disorder that presents and progresses in various ways, making prognostication difficult. Several paradigms exist for providers to elucidate prognosis in a way that addresses not only the amount of time a patient has to live, but also a patient's quality of their life moving forward. Prognostication, with regard to both survivability and quality of life, is impacted by several features that include, but are not limited to, patient demographics, clinical features on presentation, and over time, access to therapy, and access to multidisciplinary clinics. An understanding of the impact that these features have on the life of a patient with ALS can help providers to develop a better and more personalized approach for patients related to their clinical prognosis after a diagnosis is made. The ultimate goal of prognostication is to empower patients with ALS to take control and make decisions with their care teams to ensure that their goals are addressed and met.
引用
收藏
页码:776 / 790
页数:15
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