scholarly journals Alleviation of Psychological Distress and the Improvement of Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Adaptation of a Short-Term Psychotherapeutic Intervention

2018 ◽  
Vol 9 ◽  
Author(s):  
Moritz Caspar Franz Oberstadt ◽  
Peter Esser ◽  
Joseph Classen ◽  
Anja Mehnert
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Psychological Distress ◽  
Psychotherapeutic Intervention ◽  
Short Term ◽  
Lateral Sclerosis

scholarly journals Prediction of caregiver burden in amyotrophic lateral sclerosis: a machine learning approach using random forests applied to a cohort study

BMJ Open ◽  
2020 ◽  
Vol 10 (2) ◽  
pp. e033109 ◽  
Author(s):  
Anna Markella Antoniadi ◽  
Miriam Galvin ◽  
Mark Heverin ◽  
Orla Hardiman ◽  
Catherine Mooney
Keyword(s):  
Quality Of Life ◽  
Machine Learning ◽  
Amyotrophic Lateral Sclerosis ◽  
Psychological Distress ◽  
Caregiver Burden ◽  
Beaumont Hospital ◽  
Primary Caregiver ◽  
Lower Sensitivity ◽  
Lateral Sclerosis

ObjectivesAmyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease that is characterised by the rapid degeneration of upper and lower motor neurons and has a fatal trajectory 3–4 years from symptom onset. Due to the nature of the condition patients with ALS require the assistance of informal caregivers whose task is demanding and can lead to high feelings of burden. This study aims to predict caregiver burden and identify related features using machine learning techniques.DesignThis included demographic and socioeconomic information, quality of life, anxiety and depression questionnaires, for patients and carers, resource use of patients and clinical information. The method used for prediction was the Random forest algorithm.Setting and participantsThis study investigates a cohort of 90 patients and their primary caregiver at three different time-points. The patients were attending the National ALS/Motor Neuron Disease Multidisciplinary Clinic at Beaumont Hospital, Dublin.ResultsThe caregiver’s quality of life and psychological distress were the most predictive features of burden (0.92 sensitivity and 0.78 specificity). The most predictive features for Clinical Decision Support model were associated with the weekly caregiving duties of the primary caregiver as well as their age and health and also the patient’s physical functioning and age of onset. However, this model had a lower sensitivity and specificity score (0.84 and 0.72, respectively). The ability of patients without gastrostomy to cut food and handle utensils was also highly predictive of burden in this study. Generally, our models are better in predicting the high-risk category, and we suggest that information related to the caregiver’s quality of life and psychological distress is required.ConclusionThis work demonstrates a proof of concept of an informatics solution to identifying caregivers at risk of burden that could be incorporated into future care pathways.

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

Advocacy in amyotrophic lateral sclerosis

2019 ◽  
pp. 243-252
Author(s):  
Albert C. Ludolph
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Coping Mechanisms ◽  
Therapeutic Approaches ◽  
Patient Centred Care ◽  
The Public ◽  
Scientific World ◽  
Neurological Conditions ◽  
Lateral Sclerosis

Amyotrophic lateral sclerosis (ALS) is among the most severe neurological conditions which leaves the patient in a speechless (deefferentiated) state. Advocacy is yielded to give patients a voice and to recognize patient’s actual preferences and needs. The chapter reviews the most important levels where advocacy is required: the affected families, professionals, the public, and health and science politics. When advocacy is performed in a considerate and thoughtful manner, patient’s coping mechanisms can be activated and quality of life can be secured to facilitate life in dignity; caregiver’s burden can be substantially reduced. For the public and scientific world, advocacy may lead to more efficient therapeutic approaches and allows for patient-centred care.

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