scholarly journals Effects of noninvasive ventilation in amyotrophic lateral sclerosis: The complication of bulbar impairment

2020 ◽  
Vol 4 (1) ◽  
pp. 2514183X2091418
Author(s):  
Junghyun Kim ◽  
John Daniel Bireley ◽  
Ghazala Hayat ◽  
Jafar Kafaie
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Noninvasive Ventilation ◽  
Definitive Treatment ◽  
Respiratory Care ◽  
Therapeutic Effects ◽  
Future Studies ◽  
Gradual Loss ◽  
Accessible Method ◽  
Lateral Sclerosis

Amyotrophic lateral sclerosis is a neurodegenerative illness that causes gradual loss of muscle function. Patients eventually develop bulbar impairment, requiring extensive respiratory support. Noninvasive ventilation (NIV) has gained attention as an easily accessible method with promising benefits. We conducted this systematic review to outline the therapeutic effects of NIV, add to previous publications discussing this topic by providing updates on newly completed and ongoing studies, and identify limitations that must be addressed in future trials. A search of PubMed and Cochran for relevant primary studies yielded 26 publications. Studies indicate NIV use is associated with improvements in quality of life, regardless of the severity of bulbar impairment. However, NIV’s benefits on survival were limited to patients with less bulbar impairment. In addition, our review found several limitations that undermine the efforts to establish a definitive treatment regimen. Future studies will need to address these problems in order to provide patients with better respiratory care.

scholarly journals Telerehabilitation in Amyotrophic Lateral Sclerosis

2021 ◽  
Author(s):  
Letícia Aquino ◽  
Juliana Victor dos Santos ◽  
Jaqueline Donola Scandoleira ◽  
Jéssica Elen Gonçalves Nascimento ◽  
Letícia Moraes de Aquino
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Respiratory Care ◽  
Face To Face ◽  
Respiratory Parameters ◽  
Remote Assessment ◽  
Advanced Stages ◽  
Assessment And Monitoring ◽  
Telephone Calls ◽  
Lateral Sclerosis

Introduction: Amyotrophic Lateral Sclerosis (ALS) is a progressive and degenerative motor disease of the nervous system. Symptoms are variable, the main one being muscle weakness. Treatment is based on medication and monitoring by a multidisciplinary team to maintain quality of life (QoL) and autonomy. There are barriers, like mobility, and telehealth (TH) can be a possibility of care. Objectives: To identify evidence of the use of TH in patients with ALS to improve symptoms and QoL. Design and settings: Study carried out at Centro Universitario São Camilo. Methodology: Literature review in the PubMed, Lilacs and PEDro, between 2011 and 2021, in Portuguese, English or Spanish, with “ALS”, “telemedicine”, “TH”. Results: Of the 14 studies found, 13 were selected after review. The majority (93%) made use of video and telephone calls for monitoring and new orientations, after face-to-face evaluation; but all showed the possibility of remote assessment, associated or no with technological resources (such apps, accelerometers, smartwatches). 31% of the studies reported indication of TH for respiratory care in critically ill patients. In general, 93% of the papers demonstrated that TH brought benefits in maintaining QoL and improving respiratory parameters. Conclusion: Use of TH in patients with ALS seems to be to viable, safe and beneficial for assessment and monitoring, especially in advanced stages and for respiratory symptoms.

scholarly journals The optimisation of noninvasive ventilation in amyotrophic lateral sclerosis: a systematic review

2019 ◽  
Vol 54 (3) ◽  
pp. 1900261 ◽  
Author(s):  
David O'Brien ◽  
Theocharis Stavroulakis ◽  
Susan Baxter ◽  
Paul Norman ◽  
Stephen Bianchi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Noninvasive Ventilation ◽  
Grey Literature ◽  
Multidisciplinary Care ◽  
Future Research ◽  
Eligibility Criteria ◽  
Respiratory Management ◽  
Lateral Sclerosis

BackgroundNoninvasive ventilation (NIV) prolongs survival and quality of life in amyotrophic lateral sclerosis (ALS); however, its benefits depend upon the optimisation of both ventilation and adherence. We aimed to identify factors associated with effective initiation and ongoing use of NIV in ALS to develop evidence-based guidance and identify areas for further research.MethodsWe searched 11 electronic databases (January 1998 to May 2018) for all types of quantitative and qualitative studies. Supplementary grey literature searches were conducted. Records were screened against eligibility criteria, data were extracted from included studies and risk of bias was assessed. We present findings using a narrative synthesis.ResultsWe screened 2430 unique records and included 52 quantitative and six qualitative papers. Factors reported to be associated with NIV optimisation included coordinated multidisciplinary care, place of initiation, selection of interfaces, ventilator modes and settings appropriate for the individual patient, and adequate secretion management. The literature indicated that patients with significant bulbar dysfunction can still derive considerable benefit from NIV if their needs are met. Research emphasises that obstructive airway events, mask leak and uncontrolled secretions should be addressed by adjustments to the interface and machine settings, and the concomitant use of cough augmentation.ConclusionThis review highlights that NIV optimisation requires an individualised approach to respiratory management tailored to the differing needs of each patient. Ultimately, this should lead to improved survival and quality of life. This review expands on recommendations in current international guidelines for NIV use in ALS and identifies areas for future research.

Noninvasive ventilation in amyotrophic lateral sclerosis: effects on sleep quality and quality of life

2016 ◽  
Vol 71 (6) ◽  
pp. 389-394 ◽  
Author(s):  
Eva Vandoorne ◽  
Bart Vrijsen ◽  
Catharina Belge ◽  
Dries Testelmans ◽  
Bertien Buyse
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Sleep Quality ◽  
Noninvasive Ventilation ◽  
Lateral Sclerosis

scholarly journals Current issues in the respiratory care of patients with amyotrophic lateral sclerosis

2015 ◽  
Vol 73 (10) ◽  
pp. 873-876 ◽  
Author(s):  
Marco Orsini ◽  
Agnaldo José Lopes ◽  
Sara Lucia Silveira de Menezes ◽  
Acary Bulle Oliveira ◽  
Marcos Raimundo Gomes de Freitas ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Vital Capacity ◽  
Peak Flow ◽  
Respiratory Care ◽  
Airway Clearance ◽  
Care Approach ◽  
Pulmonary Volumes ◽  
Lateral Sclerosis ◽  
Sniff Nasal Inspiratory Pressure

Amyotrophic lateral sclerosis is a progressive neuromuscular disease, resulting in respiratory muscle weakness, reduced pulmonary volumes, ineffective cough, secretion retention, and respiratory failure. Measures as vital capacity, maximal inspiratory and expiratory pressures, sniff nasal inspiratory pressure, cough peak flow and pulse oximetry are recommended to monitor the respiratory function. The patients should be followed up by a multidisciplinary team, focused in improving the quality of life and deal with the respiratory symptoms. The respiratory care approach includes airway clearance techniques, mechanically assisted cough and noninvasive mechanical ventilation. Vaccination and respiratory pharmacological support are also recommended. To date, there is no enough evidence supporting the inspiratory muscle training and diaphragmatic pacing.

scholarly journals Independent home use of a brain-computer interface by people with amyotrophic lateral sclerosis

Neurology ◽  
2018 ◽  
Vol 91 (3) ◽  
pp. e258-e267 ◽  
Author(s):  
Jonathan R. Wolpaw ◽  
Richard S. Bedlack ◽  
Domenic J. Reda ◽  
Robert J. Ringer ◽  
Patricia G. Banks ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Brain Computer Interface ◽  
Computer Interface ◽  
It Use ◽  
Technical Problems ◽  
Rapid Disease Progression ◽  
And Performance ◽  
Lateral Sclerosis

ObjectiveTo assess the reliability and usefulness of an EEG-based brain-computer interface (BCI) for patients with advanced amyotrophic lateral sclerosis (ALS) who used it independently at home for up to 18 months.MethodsOf 42 patients consented, 39 (93%) met the study criteria, and 37 (88%) were assessed for use of the Wadsworth BCI. Nine (21%) could not use the BCI. Of the other 28, 27 (men, age 28–79 years) (64%) had the BCI placed in their homes, and they and their caregivers were trained to use it. Use data were collected by Internet. Periodic visits evaluated BCI benefit and burden and quality of life.ResultsOver subsequent months, 12 (29% of the original 42) left the study because of death or rapid disease progression and 6 (14%) left because of decreased interest. Fourteen (33%) completed training and used the BCI independently, mainly for communication. Technical problems were rare. Patient and caregiver ratings indicated that BCI benefit exceeded burden. Quality of life remained stable. Of those not lost to the disease, half completed the study; all but 1 patient kept the BCI for further use.ConclusionThe Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes. BCIs that support communication are at present most suitable for people who are severely disabled but are otherwise in stable health. Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.

Quality-of-Life Assessments That Can Be Used for Patients Diagnosed With Amyotrophic Lateral Sclerosis: A Scoping Review

2021 ◽  
Vol 75 (Supplement_2) ◽  
pp. 7512500033p1
Author(s):  
Addie Broom ◽  
Hannah Prescott ◽  
Mallorie Savage ◽  
Addie Broom ◽  
Emily Crawford ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Scoping Review ◽  
Lateral Sclerosis

User Centered Approach to the Supra-Functional Needs of People Living with Amyotrophic Lateral Sclerosis (ALS)

2020 ◽  
Author(s):  
Deana McDonagh ◽  
Kayla Arquines ◽  
Elizabeth T. Hsiao-Wecksler ◽  
Mahshid Mansouri ◽  
Girish Krishnan ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Design Thinking ◽  
Healthcare Management ◽  
User Centered Design ◽  
Emotional Needs ◽  
Empathic Understanding ◽  
The Individual ◽  
Lateral Sclerosis ◽  
User Centered

Abstract User-centered design relies upon the appreciation that assistive technology device solutions need to include the functional and supra-functional (e.g., emotional, social, cultural) needs of users. Developing solutions without basing decision-making on both quantitative (functional) and qualitative (supra-functional) needs can lead to imbalanced devices, services, and/or environments. Satisfying both functional and supra-functional needs is the foundation of user-centered design, which in itself relies upon empathic understanding of the person that one is aiming to serve. This paper presents a study of the lived experiences of people living with Amyotrophic Lateral Sclerosis, their caregivers, and members of the healthcare management team from a human-centered perspective in the pursuit of pain points, deeper understanding of the emotional needs, and revelation of opportunities for improving quality of life and human experience through more user-centered design. We focus on user-centered design-thinking research tools (e.g., mood boards, journey maps, personas) to (a) understand the authentic experience of the individual in their vernacular and their terminology, and (b) to support a data rich conversation that focuses upon both functional and supra-functional needs to highlight opportunities for design interventions).

Sign in / Sign up

Export Citation Format

Share Document