Evolución de pacientes con esclerosis lateral amiotrófica atendidos en una unidad multidisciplinar

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.nrl.2011.01.021

Cited by 27 publications

(8 citation statements)

References 24 publications

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“…This constraint has the potential to present a limited perspective on the overall clinical management of ALS and related MNDs, for which a multi-disciplinary approach has been well-supported (e.g., [113,127]). More specifically, the occurrence and management recommendations targeting aspiration pneumonia were not extracted in our literature search, omitting a discussion regarding functional airway clearance, and the roles of assisted-cough strategies, manual insufflation/exsufflation, and non-invasive positive pressure ventilation (for examples, see Sancho et al (2004; 2007); Miller et al (2009); Britton et al (2014)).…”

Section: Discussionmentioning

confidence: 99%

Trends in Research Literature Describing Dysphagia in Motor Neuron Diseases (MND): A Scoping Review

et al. 2017

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Dysphagia in motor neuron diseases (MNDs) is highly complex, affecting all stages of swallowing and leading to impaired swallowing safety and efficiency. In order to explore the degree to which research is capturing the symptom of dysphagia in MND, we conducted a scoping review of the existing literature. The primary aims of this review were to identify common themes within the literature on dysphagia in MND, explore patterns and trends in research focus, and identify if any imbalances exist between the research themes related to dysphagia description and management. Methods A comprehensive search strategy yielded 1690 unique articles for review. Following relevance screening, a total of 157 articles were included in the synthesis. Relevant data and keywords were extracted from each article and grouped into themes. Frequency estimates were calculated for each theme to identify trends across research literature. Results Swallowing impairment in MNDs is described in a variety of ways across current research. The most commonly reported theme was Aspiration/Penetration, mentioned in 73.2% of all included articles; a significant imbalance was identified between reports of swallowing safety and efficiency (p=0.008). The most frequently reported theme related to dysphagia management was Enteral Nutrition, and very few studies have reported on the efficacy of Rehabilitation/Compensatory recommendations. Conclusions It is suggested that researchers and clinicians remain mindful of imbalances and gaps in research, and aim to characterize dysphagia in MNDs in a comprehensive manner. Further research investigating discrete, measureable changes in swallowing pathophysiology would be beneficial to delineate the key factors contributing to impaired swallowing safety and efficiency.

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Section: Discussionmentioning

confidence: 99%

Trends in Research Literature Describing Dysphagia in Motor Neuron Diseases (MND): A Scoping Review

et al. 2017

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“…Multidisciplinary ALS clinics confer survival and quality-of-life benefits [41–44] and may facilitate patient enrollment in trials. In future, telemedicine may allow immobile patients to participate in multidisciplinary clinics for care and research participation.…”

Section: Challenges In Als Clinical Trialsmentioning

confidence: 99%

New considerations in the design of clinical trials for amyotrophic lateral sclerosis

Berry

Cudkowicz²

2011

Clinical Investigation

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Amyotrophic lateral sclerosis is a devastating neurodegenerative disease caused by loss of motor neurons. Its pathophysiology remains unknown, but progress has been made in understanding its genetic and biochemical basis. Clinical trialists are working to translate basic science successes into human trials with more efficiency, in the hope of finding successful treatments. In the future, new preclinical models, including patient-derived stem cells may augment transgenic animal models as preclinical tools. Biomarker discovery projects aim to identify markers of disease onset and progression for use in clinical trials. New trial designs are reducing study time, improving efficiency and helping to keep pace with the increasing rate of basic and translational discoveries. Ongoing trials with novel designs are paving the way for amyotrophic lateral sclerosis clinical research.

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“…Various studies have shown that a multidisciplinary approach to patients with ALS [6,7,[14][15][16][17][18][19] is associated with decreased hospital admissions and length of hospital stay and increased use of ventilator support, percutaneous endoscopic gastrostomy (PEG) and palliative referral. This retrospective study shows that in the SUS, multiprofessional care can improve survival in patients with ALS, even for patients with bulbar onset who have a worse prognosis [20,21].…”

Section: Discussionmentioning

confidence: 99%

“…Thus, studies with multidisciplinary units in the UK [24], Ireland [15] and Spain [18] have concluded that compared to ALS patients who were treated in neurology services, patients treated in multidisciplinary units have better survival, and patients whose symptoms began at the bulbar level especially benefited from multidisciplinary care. Nevertheless, the average one-year mortality rate is approximately 50% overall and 57% in bulbar cases [15].…”

Section: Discussionmentioning

confidence: 99%

“…Thus, it is important to value the clinical evaluation and follow-up every three months, and tertiary specialized care centers play an important role in this aspect, especially in patients classified as Suspect [4][5][6]18]. Survival may be augmented by the increased use of riluzole, NIV and gastrostomy tube placement, but evidence shows that coordinated care independently improves the prognosis of ALS patients [24].…”

Section: Discussionmentioning

confidence: 99%

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Multidisciplinary Care Improves Survival of Patients with Amyotrophic Lateral Sclerosis in the Unique Health System (SUS) in Brazil

Moura¹,

Casulari²,

Novaes³

2017

J Neurol Disord

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Objective: To determine the effectiveness of multi-professional palliative care in patients with amyotrophic lateral sclerosis in Brazilian public health system. Methods:Historic-control study before and after the Reference Center, with records and mortality data of 302 patients treated with riluzole between 2005 and 2015, were retrospectively evaluated and survival curves were analyzed.Results: There were 181 men (59.9%) and 121 women (40.1%) with a diagnostic delay time of 28.1 months for spinal-onset and 20.1 months for bulbar-onset (p=0.003) and a mean survival of 61.7 ± 5.4 months for spinal-onset and 38 ± 3.5 months for bulbar-onset (p=0.01). Electromyography did not confirm the diagnosis in 55.6% of the suspected spinal-onset cases and 36.1% of the bulbar-onset. From 2005 to 2011, mean survival was 33.6 ± 2.4 months, and after multidisciplinary care, 72.2 ± 7.2 months (log-rank: 0.0001). Conclusion:Multidisciplinary care improves the survival of amyotrophic lateral sclerosis patients in the Unique Health System.

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Evolución de pacientes con esclerosis lateral amiotrófica atendidos en una unidad multidisciplinar

Abstract: The treatment in multidisciplinary units does not change the neurological progression of the disease, but increases the survival of ALS patients regardless of their initial onset, emphasising the use of multidisciplinary care.

Cited by 27 publications

References 24 publications

Trends in Research Literature Describing Dysphagia in Motor Neuron Diseases (MND): A Scoping Review

Trends in Research Literature Describing Dysphagia in Motor Neuron Diseases (MND): A Scoping Review

New considerations in the design of clinical trials for amyotrophic lateral sclerosis

Multidisciplinary Care Improves Survival of Patients with Amyotrophic Lateral Sclerosis in the Unique Health System (SUS) in Brazil

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