Palliative Care for Patients With Amyotrophic Lateral Sclerosis

Mitsumoto, Hiroshi; Rabkin, Judith G.

doi:10.1001/jama.298.2.207

Cited by 114 publications

(75 citation statements)

References 67 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…It has been approved by the Ethics Comittee of Federal University of São Paulo. During the 12-year study-period (from 1999-2011), we identified patients from the Motor Neuron Disease Clinic from the Division of Clinical Investigation on Neuromuscular Diseases (DCINM) [24], Department of Neurology and Neurosurgery of the Federal University of São Paulo. These patients had received an ALS diagnosis, according to the criteria of El Escorial from the World Federation of Neurology (World Federation of Neurology Research Group on Neuromuscular Diseases).…”

Section: Methodsmentioning

confidence: 99%

Epidemiological and clinical factors impact on survival in ALS/ MND: a cohort study

Fávero

Voos²,

Abreu

et al. 2015

Int Arch Med

View full text Add to dashboard Cite

Background: Motor neuron diseases (MND) are rare yet severe neurodegenerative disorders with peculiar characteristics of unknown etiologies that cannot be prevented. They are irreversible and incurable, but treatable diseases. Treatment can improve the quality of life and increase survival. This study aimed to investigate the impact of epidemiological and clinical factors in individuals with motor neuron diseases, particularly amyotrophic lateral sclerosis (ALS). This study aimed to analyse the survival of patients with ALS in relation to clinical and epidemiological aspects. Results: A total of 1146 records of patients with MND were investigated and 578 records, in accordance with the inclusion criteria, were included. For analyzing epidemiological and clinical aspects 231 records were included and survival curves were plotted. Methods: Conclusion:The survival of patients with MND was not influenced by sex. Younger patients live longer. Too much time passes between initial symptoms and 1 st appointment. Patients who survive longest are those who were not diagnosed on the 1st appointment, or did not show any clinical and electromyographic findings, and presented with initial symptoms in the lower limbs.

show abstract

Section: Methodsmentioning

confidence: 99%

Epidemiological and clinical factors impact on survival in ALS/ MND: a cohort study

Fávero

Voos²,

Abreu

et al. 2015

Int Arch Med

View full text Add to dashboard Cite

show abstract

“…The physician should explain the risks and benefits of treatments at each visit in an unbiased way, and understand that the patient's choices could change as the disease progress. As Als progresses, the goal of patient care changes from maximizing function to providing effective and compassionate palliative care 102 .…”

Section: Palliative Carementioning

confidence: 99%

Amyotrophic lateral sclerosis (ALS): three letters that change the people's life. For ever

Oliveira

Pereira

2009

Arq. Neuro-Psiquiatr.

View full text Add to dashboard Cite

-Amyotrophic lateral sclerosis (Als) is a neurodegenerative disease affecting the motor nervous system. it causes progressive and cumulative physical disabilities in patients, and leads to eventual death due to respiratory muscle failure. The disease is diverse in its presentation, course, and progression. We do not yet fully understand the cause or causes of the disease, nor the mechanisms for its progression; thus, we lack effective means for treating this disease. currently, we rely on a multidisciplinary approach to symptomatically manage and care for patients who have Als. Although amyotrophic lateral sclerosis and its variants are readily recognized by neurologists, about 10% of patients are misdiagnosed, and delays in diagnosis are common. prompt diagnosis, sensitive communication of the diagnosis, the involvement of the patient and their family, and a positive care plan are prerequisites for good clinical management. A multidisciplinary, palliative approach can prolong survival and maintain quality of life. Treatment with riluzole improves survival but has a marginal effect on the rate of functional deterioration, whereas non-invasive ventilation prolongs survival and improves or maintains quality of life. in this review, we discuss the diagnosis, management, and how to cope with impaired function and end of life on the basis of our experience, the opinions of experts, existing guidelines, and clinical trials. Multiple problems require a multidisciplinary approach including aggressive symptomatic management, rehabilitation to maintain motor function, nutritional support (enteric feeding, gastrostomy), respiratory support (non invasive home ventilation, invasive ventilation, tracheotomy), augmentative communication devices, palliative care, psychological support for both patients and families (because family members so often play a central role in management and care), communication between the care team, the patient and his or her family, and recognition of the clinical and social effects of cognitive impairment. social, bioethical, and financial issues as well as advance directives should be addressed. A plethora of evidence-based guidelines should be compiled into an internationally agreed guideline of best practice. The multidisciplinary team has changed the history of disease, with still no curative therapy available.KeY WorDs: amyotrophic lateral sclerosis, diagnosis, treatment.Esclerose lateral amiotrófica (ELA): três letras que mudam a vida de uma pessoa. Para sempre.Resumo -A esclerose lateral amiotrófica (elA) é doença neurodegenerativa comprometendo o sistema nervoso motor. ela causa comprometimento físico, progressivo e acumulativo, com óbito freqüentemente decorrente de falência respiratória. A enfermidade apresenta características diversas nas formas de apresentação, curso e progressão. Não entendemos ainda a causa ou causas dessa enfermidade, nem os mecanismos que regem a sua progressão; assim, tratamentos efetivos não são, até o momento, conhecidos. Atualmente, recomenda-se que os...

show abstract

“…20 In the United States, hospice guidelines for ALS include (1) critically impaired respiratory function (forced vital capacity ,30% of normal, dyspnea at rest, and a decision not to pursue mechanical ventilation), or (2) the combination of rapid progression of disease and critical nutritional impairment, or (3) the combination of rapid progression of disease and at least 1 lifethreatening complication. 29 In discussing hospice with patients and families, it is often helpful to highlight the holistic care that hospice provides to both the patient and the family, including ongoing symptom assessment, support for the patient and family, and spiritual guidance; some hospice organizations also offer bereavement services.…”

Section: Introducing Hospice For Terminal Carementioning

confidence: 99%

Neurologists as primary palliative care providers

2016

View full text Add to dashboard Cite

Purpose of review: To present current knowledge and recommendations regarding communication tasks and practice approaches for neurologists as they practice primary palliative care, including discussing serious news, managing symptoms, aligning treatment with patient preferences, introducing hospice/terminal care, and using the multiprofessional approach. Recent findings: Neurologists receive little formal palliative care training yet often need to discuss prognosis in serious illness, manage intractable symptoms in chronic progressive disease, and alleviate suffering for patients and their families. Because patients with neurologic disorders often have major cognitive impairment, physical impairment, or both, with an uncertain prognosis, their palliative care needs are particularly challenging and they remain largely uncharacterized and often unmanaged. Summary: We provide an overview of neuropalliative care as a fundamental skill set for all neurologists. Neurol Clin Pract 2016;6:40-48 P alliative care is specialized medical care for people with serious illness. With few curative options in neurology, most patients need to learn to live with their disease for a long time before they die with-or from-that disease. The newly proposed concept of distinguishing primary palliative care (skills that all clinicians should have) from specialist palliative care (palliative care specialty skills) 1,2 is particularly relevant to neurology, in which palliative and neurologic care needs coexist.In this review, we will follow 2 patients and their families through their illness trajectory (1 with amyotrophic lateral sclerosis (ALS) in the outpatient setting and 1 with severe stroke in the inpatient setting) and discuss proposed communication tasks. Rather than providing a comprehensive review of neuropalliative care, this article highlights some common issues faced by neurologists and aims to alert both neurologists and non-neurologists to the variety of palliative care issues in daily neurologic practice. For readers wanting a more in-depth and diseasespecific review of palliative care, we refer them to several recent reviews.

show abstract

Palliative Care for Patients With Amyotrophic Lateral Sclerosis

Cited by 114 publications

References 67 publications

Epidemiological and clinical factors impact on survival in ALS/ MND: a cohort study

Epidemiological and clinical factors impact on survival in ALS/ MND: a cohort study

Amyotrophic lateral sclerosis (ALS): three letters that change the people's life. For ever

Neurologists as primary palliative care providers

Contact Info

Product

Resources

About