Outcome of patients with amyotrophic lateral sclerosis attending in a multidisciplinary care unit

Rivera, Francisco J.; Guevara, Celia Oreja; Gallego, Irene; Valiente, Belén San José; Recuerda, A. Santiago; Mendieta, M.A. Gómez; Arpa, Javier; Tejedor, E. Díez

doi:10.1016/j.nrleng.2011.01.010

Cited by 14 publications

(13 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Early intervention, when dysphagia is mild/moderate, may be preferred as a proactive intervention to maximally affect survival and quality of life, although data supporting the survival benefit are inconsistent [33,114,115]. Patient acceptance is often better when the intervention is initially used as a supplement to oral caloric intake and not the sole source of nutrition.…”

Section: Percutaneous Endoscopic Gastrostomymentioning

confidence: 99%

Challenges in the Understanding and Treatment of Amyotrophic Lateral Sclerosis/Motor Neuron Disease

Rosenfeld¹,

Strong

2015

Neurotherapeutics

View full text Add to dashboard Cite

With the acceleration in our understanding of ALS and the related motor neuron disease has come even greater challenges in reconciling all of the proposed pathogenic mechanisms and how this will translate into impactful treatments. Fundamental issues such as diagnostic definition(s) of the disease spectrum, relevant biomarkers, the impact of multiple novel genetic mutations and the significant effect of symptomatic treatments on disease progression are all areas of active investigation. In this review, we will focus on these key issues and highlight the challenges that confront both clinicians and basic science researchers.

show abstract

Section: Percutaneous Endoscopic Gastrostomymentioning

confidence: 99%

Challenges in the Understanding and Treatment of Amyotrophic Lateral Sclerosis/Motor Neuron Disease

Rosenfeld¹,

Strong

2015

Neurotherapeutics

View full text Add to dashboard Cite

show abstract

“…Fatigue was not only the most prevalent and bothersome self‐reported symptom, but also the least frequently treated symptom reported. Of interest, while several studies have demonstrated the survival benefit in receiving ALS care at a multidisciplinary clinic, our analysis reveals that location of care does not affect symptom prevalence, severity, or likelihood of treatment.…”

Section: Discussionmentioning

confidence: 78%

Improving symptom management for people with amyotrophic lateral sclerosis

et al. 2017

View full text Add to dashboard Cite

Introduction Symptomatic management is the main focus of ALS clinical care. We aim to report the prevalence of ALS‐related symptoms and characterize self‐reported symptomatic management. Methods A symptom management survey developed by the Muscular Dystrophy Association Clinical Research Network was completed by ALS registrants. Logistic regression identified potential predictors of symptom prevalence, severity, and treatment. Results A total of 567 ALS participants reported fatigue (90%), muscle stiffness (84%), and muscle cramps (74%) as most prevalent symptoms. Fatigue (18%), muscle stiffness (14%), and shortness of breath (12%) were most bothersome. Although fatigue was the most prevalent symptom, it was also least treated (10%). Neither location of care nor disease duration was associated with symptom prevalence, severity, or probability of receiving treatment. Discussion This large patient‐reported symptom survey suggests that fatigue is the most prevalent, bothersome, and undertreated ALS symptom. Improving ALS symptom management is an unmet medical need and clinical trials of symptomatic treatments are needed. Muscle Nerve 57: 20–24, 2018

show abstract

“…While no Class I evidence exists in support of these symptomatic therapies in ALS, the use of these medications is supported by clinical practice. If these are not sufficient, reports have suggested benefit from botulinum toxin to the salivary glands or irradiation of the salivary glands [263][264][265][266]. These medications should be used cautiously because at higher doses they may actually weaken the muscles.…”

Section: Nutritionmentioning

confidence: 99%

“…Multidisciplinary clinics are an established ALS care model, associated with improved quality of life, reduced hospitalizations, and possibly with improved survival [266,[322][323][324][325]. The International Alliance of ALS/MND Associations (http://www.alsmndalliance .org/) provides a directory of these organizations, listed by country, that support or facilitate multidisciplinary care and research.…”

Section: Pulmonary Managementmentioning

confidence: 99%