Ethical Principles in Patient-Centered Medical Care to Support Quality of Life in Amyotrophic 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.

Download Full-text

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

American Journal of Occupational Therapy ◽

10.5014/ajot.2021.75s2-rp33 ◽

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

Download Full-text

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

Muscle & Nerve ◽

10.1002/mus.22270 ◽

2011 ◽

Vol 45 (1) ◽

pp. 131-134 ◽

Cited By ~ 12

Author(s):

Sébastien Montel ◽

Laurence Albertini ◽

Elisabeth Spitz

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Coping Strategies ◽

Lateral Sclerosis

Download Full-text

AN AYURVEDIC CASE REPORT ON AMYOTROPHIC LATERAL SCLEROSIS

November 2020 - International Ayurvedic Medical Journal ◽

10.46607/iamj4409112021 ◽

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

Download Full-text

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

Journal of the Neurological Sciences ◽

10.1016/j.jns.2021.117701 ◽

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

Download Full-text

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

Journal of Palliative Medicine ◽

10.1089/jpm.2012.0162 ◽

2012 ◽

Vol 15 (11) ◽

pp. 1181-1184 ◽

Cited By ~ 12

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

Download Full-text

Advocacy in amyotrophic lateral sclerosis

Advocacy in Neurology ◽

10.1093/med/9780198796039.003.0021 ◽

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.

Download Full-text

Associations of Patient Mood, Modulators of Quality of Life, and Pharmaceuticals with Amyotrophic Lateral Sclerosis Survival Duration

Behavioral Sciences ◽

10.3390/bs10010033 ◽

2020 ◽

Vol 10 (1) ◽

pp. 33 ◽

Cited By ~ 2

Author(s):

Leila Bond ◽

Gloria Bowen ◽

Benjamin Mertens ◽

Keelie Denson ◽

Kathleen Jordan ◽

...

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Random Forests ◽

Muscle Relaxants ◽

Survival Duration ◽

Clinical Impression ◽

Physical Factors ◽

Exact Test ◽

Lateral Sclerosis

Associations of modulators of quality of life (QoL) and survival duration are assessed in the fatal motor neuron disease, Amyotrophic Lateral Sclerosis. Major categories include clinical impression of mood (CIM); physical health; patient social support; and usage of interventions, pharmaceuticals, and supplements. Associations were assessed at p < 0.05 and p < 0.001 significance thresholds using applicable methods (Chi-square, t-test, ANOVA, logistical regression, random forests, Fisher’s exact test) within a retrospective cohort of 1585 patients. Factors significantly correlated with positive (happy or normal) mood included family support and usage of bi-level positive airway pressure (Bi-PAP) and/or cough assist. Decline in physical factors like presence of dysphagia, drooling, general pain, and decrease in ALSFRS-R total score or forced vital capacity (FVC) significantly correlated with negative (depressed or anxious) mood (p < 0.05). Use of antidepressants or pain medications had no association with ALS patient mood (p > 0.05), but were significantly associated with increased survival (p < 0.05). Positive patient mood, Bi-PAP, cough assist, percutaneous endoscopic gastrostomy (PEG), and accompaniment to clinic visits associated with increased survival duration (p < 0.001). Of the 47 most prevalent pharmaceutical and supplement categories, 17 associated with significant survival duration increases ranging +4.5 to +16.5 months. Tricyclic antidepressants, non-opioids, muscle relaxants, and vitamin E had the highest associative increases in survival duration (p < 0.05). Random forests, which examined complex interactions, identified the following pharmaceuticals and supplements as most predictive to survival duration: Vitamin A, multivitamin, PEG supplements, alternative herbs, antihistamines, muscle relaxants, stimulant laxatives, and antispastics. Statins, metformin, and thiazide diuretics had insignificant associations with decreased survival.

Download Full-text