Quality of life, disability, and clinical variables in amyotrophic lateral sclerosis

2021 ◽  
Author(s):  
Mariana Asmar Alencar ◽  
Izaura Monique Moura da Silva ◽  
Stéfanie Marcelle Hilário ◽  
Marcela Ferreira de Andrade Rangel ◽  
Juliana Silva Abdo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Progressive Increase ◽  
Clinical Aspects ◽  
Strongly Correlated ◽  
Functional Aspects ◽  
Fatigue Severity ◽  
Als Patients ◽  
Lateral Sclerosis

ABSTRACT Background: Amyotrophic lateral sclerosis (ALS) is a motor neuron disease that results in a progressive increase in dysfunctions, limitations and restrictions over time, which can impact on quality of life (QoL). Therefore, expanding knowledge on QoL and possible factors associated with ALS can enable the development of actions to ensure greater wellbeing for the population. Objective: To investigate QoL in ALS and determine associations with demographic, functional and clinical aspects. Methods: Forty-five individuals with ALS (56.4±11.1 years) participated in the study. Demographic, clinical and functional aspects were investigated. Functioning and QoL were assessed using disease-specific tools (ALS Functional Ranting Scale-Revised/ALSFRS-R and ALS Assessment Questionnaire/ALSAQ-40). Fatigue was assessed using the Fatigue Severity Scale. Descriptive, correlation and stepwise multiple linear regression analyses were performed with the aid of the SPSS. Results: The mean ALSAQ-40 score was 279.0±118.3. QoL was significantly worse among women (p=0.001) and poor QoL was associated with the inability to walk (p=0.014), pain (p=0.021) and disease severity (p≤0.002). QoL was strongly correlated with the ALSFRS-R score (r=-0.82). Moderate to weak correlations were found for mobility [turning in bed (r=-0.62), locomotion (r=-0.33) and sit to stand (r=-0.40)], strength (r=-0.49), fatigue (r=0.35) and pain (r=-0.32) (p<0.03). The regression analysis revealed that the ALSFRS-R score (β=-0.76; p=0.00) and fatigue (β=0.20; p=0.04) were predictors of QoL. Conclusions: QoL was worse in women, older people, severe stages of ALS, patients with impaired mobility, those with a poorer physical performance and those who reported pain. Functional status and fatigue are predictors of QoL in ALS.

scholarly journals A Nation-Wide, Multi-Center Study on the Quality of Life of ALS Patients in Germany

2021 ◽  
Vol 11 (3) ◽  
pp. 372
Author(s):  
Tara Peseschkian ◽  
Isabell Cordts ◽  
René Günther ◽  
Benjamin Stolte ◽  
Daniel Zeller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Rating Scale ◽  
Severe Disease ◽  
Disease Stage ◽  
Individualized Care ◽  
Als Patients ◽  
The Impact ◽  
Lateral Sclerosis

Improving quality of life (QoL) is central to amyotrophic lateral sclerosis (ALS) treatment. This Germany-wide, multicenter cross-sectional study analyses the impact of different symptom-specific treatments and ALS variants on QoL. Health-related QoL (HRQoL) in 325 ALS patients was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSAQ-5) and EuroQol Five Dimension Five Level Scale (EQ-5D-5L), together with disease severity (captured by the revised ALS Functional Rating Scale (ALSFRS-R)) and the current care and therapies used by our cohort. At inclusion, the mean ALSAQ-5 total score was 56.93 (max. 100, best = 0) with a better QoL associated with a less severe disease status (β = −1.96 per increase of one point in the ALSFRS-R score, p < 0.001). “Limb-onset” ALS (lALS) was associated with a better QoL than “bulbar-onset” ALS (bALS) (mean ALSAQ-5 total score 55.46 versus 60.99, p = 0.040). Moreover, with the ALSFRS-R as a covariate, using a mobility aid (β = −7.60, p = 0.001), being tracheostomized (β = −14.80, p = 0.004) and using non-invasive ventilation (β = −5.71, p = 0.030) were associated with an improved QoL, compared to those at the same disease stage who did not use these aids. In contrast, antidepressant intake (β = 5.95, p = 0.007), and increasing age (β = 0.18, p = 0.023) were predictors of worse QoL. Our results showed that the ALSAQ-5 was better-suited for ALS patients than the EQ-5D-5L. Further, the early and symptom-specific clinical management and supply of assistive devices can significantly improve the individual HRQoL of ALS patients. Appropriate QoL questionnaires are needed to monitor the impact of treatment to provide the best possible and individualized care.

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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