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.

scholarly journals Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature

2019 ◽  
Vol 267 (3) ◽  
pp. 607-615 ◽  
Author(s):  
Rhiannon Edge ◽  
◽  
Roger Mills ◽  
Alan Tennant ◽  
Peter J. Diggle ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
National Study ◽  
Future Research ◽  
Depression And Anxiety ◽  
Patient Reported ◽  
Lateral Sclerosis

Abstract Introduction The importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent. We explored the relationships between pain, depression, anxiety and QoL to reconcile the previous contrasting findings and inform future research and clinical practice. Methods Patient-reported outcomes were obtained as part of the Trajectories of Outcomes in Neurological Conditions study. Mood and QoL scales underwent Rasch analysis. Correlation coefficients examined the strength of association between variables of interest. A bivariate regression model was developed to examine the effects of pain, depression and anxiety on joint psychological and physical QoL domains. Results Of 636 people with ALS, 69% reported pain, of these most had mild pain. Seven percent (7%) of participants exceeded published cutoffs for probable depression and 14% had probable anxiety. Pain, depression and anxiety all influence quality of life; depression has a significant effect on both physical and psychological domains of QoL, whereas pain affects physical QoL and anxiety psychological QoL. Conclusions These results show the importance of expressing quality of life in a conceptually appropriate way, as failing to take account of the multidimensional nature of QoL can result in important nuances being overlooked. Clinicians must be aware that pain, depression and anxiety all worsen QoL across their ranges, and not just when pain is severe or when anxiety or depression reach case level.

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 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

Coping strategies in relation to quality of life in amyotrophic lateral sclerosis

2011 ◽  
Vol 45 (1) ◽  
pp. 131-134 ◽  
Author(s):  
Sébastien Montel ◽  
Laurence Albertini ◽  
Elisabeth Spitz
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Coping Strategies ◽  
Lateral Sclerosis

scholarly journals AN AYURVEDIC CASE REPORT ON AMYOTROPHIC LATERAL SCLEROSIS

2021 ◽  
Vol 9 (11) ◽  
pp. 2903-2908
Author(s):  
Ambika. K ◽  
Arundhathi. K ◽  
Lekshmi G. Krishna
Keyword(s):  
Quality Of Life ◽  
Skeletal Muscle ◽  
Amyotrophic Lateral Sclerosis ◽  
Case Report ◽  
Lower Limbs ◽  
Skeletal Muscle Weakness ◽  
Treatment Principle ◽  
Severe Type ◽  
Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) is a common and most severe type of Motor Neuron Disease. It is characterized by progressive skeletal muscle weakness, wasting and fasciculations. Survival is for 3-5 years, and the death is from respiratory paralysis. The incidence of ALS is between 0.6 and 3.8 per 100000 persons per year. Males are predominantly affected. Here is a case report of 45yrs old male who presented with complaints of difficulty in walking since 3years, with an insidious asymmetric onset of weakness of bilateral lower limbs with wasting and fasciculations. In Ayurveda, the case was symptomatologically diagnosed as Mamsa Sosha, which occurs as the result of obstruction of Snayu and Rakthadhamanis (Mamsavaha srotomoolas). The assessment was done using ALSFRS-R Scale. The treatment was aimed at improving the quality of life and also decreasing the rate of disease progression. The treatment principle adopted was Srothosodhana (Ama- Avaranaghna cikitsa) and Brimhana. Promising results were obtained after treatment. Keywords: ALS, MND, Ayurveda, Avaranaghna cikitsa, Mamsa Sosha, Mamsa Kshaya

scholarly journals Amyotrophic lateral sclerosis patients' quality of life and their caregiver burden during COVID-19 pandemic

2021 ◽  
Vol 429 ◽  
pp. 117701
Author(s):  
Alessandro Bombaci ◽  
Silvia Giusiano ◽  
Laura Peotta ◽  
Barbara Iazzolino ◽  
Enza Mastro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Caregiver Burden ◽  
Lateral Sclerosis

Evolution of Quality of Life, Mental Health, and Coping Strategies in Amyotrophic Lateral Sclerosis: A Pilot Study

2012 ◽  
Vol 15 (11) ◽  
pp. 1181-1184 ◽  
Author(s):  
Sébastien Montel ◽  
Laurence Albertini ◽  
Claude Desnuelle ◽  
Elisabeth Spitz
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Amyotrophic Lateral Sclerosis ◽  
Pilot Study ◽  
Coping Strategies ◽  
And Coping ◽  
Lateral Sclerosis
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