scholarly journals Exploring and Addressing ‘Concerns’ for Significant Others to Extend the Understanding of Quality of Life With Amyotrophic Lateral Sclerosis: A Qualitative Study

2019 ◽  
Vol 11 ◽  
pp. 117957351985936 ◽  
Author(s):  
Hikari Ando ◽  
Rosanna Cousins ◽  
Carolyn A Young
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Sense Of Self ◽  
Holistic Approach ◽  
Significant Others ◽  
World Health ◽  
The Impact ◽  
Depth Interviews ◽  
Lateral Sclerosis

Background: The absence of curative medication for amyotrophic lateral sclerosis (ALS) makes palliative care and understanding quality of life (QoL) in ALS a clinical priority. Previous qualitative research has explored the concept of QoL in terms of illness impact on life perspectives and sense of self. Objective: In this research, we explored ‘concerns’ – one of the four aspects in the World Health Organisation’s conceptualisation of QoL – towards adding to the literature. Methods: In-depth interviews with 26 individuals with ALS were subjected to thematic analysis involving both inductive and deductive approaches to explore participant’s concerns, and to evaluate the relevance of their concerns for understanding QoL in ALS. Findings: The analysis showed that concerns for significant others contribute to participant’s QoL because of their existential value. It was important for participants to minimise the impact of limitations and burdens associated with ALS on significant others, even at a cost to self. Discussion: The current study supports a holistic approach in service provision, ensuring the inclusion of relevant significant others. It is further suggested that clinicians explore the specifics of burdens perceived by patients in order to support them in minimising the burdens for their significant others.

Amyotrophic Lateral Sclerosis

2018 ◽  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Health Care Professionals ◽  
New Technologies ◽  
Neurodegenerative Disorder ◽  
Well Being ◽  
Psychological Well Being ◽  
The Impact ◽  
Lateral Sclerosis

Amyotrophic lateral sclerosis: Understanding and optimizing quality of life and psychological well-being presents a comprehensive and up-to-date review of the enhancement of the lives of people with amyotrophic lateral sclerosis (ALS) and their caregivers. ALS is a progressive, fatal neurodegenerative disorder. No current medical therapy can reverse or stop its progression, and the promotion of quality of life and psychological well-being is a central component of ALS care. Health care professionals who work in this field should incorporate attention to psychological, emotional, and relational aspects of the disease into their approach to care. This book provides some of the knowledge and direction necessary for optimizing the quality of care for individuals with ALS and their caregivers. Topics discussed include an ALS-centred view of quality of life, depressive features, anxiety, resilience, cognitive impairment, complementary and alternative medicines, and psychological research. Specific elements of ALS, such as end-of-life concerns and bulbar dysfunction, are described through the lens of their psychological impact. There is extensive discussion of the development of new psychological treatments, as well as the impact and incorporation of new technologies, with the goal of fostering optimal quality of life and psychological well-being as key parts of a holistic approach to care for the patients and for those who are close to such individuals.

Mindfulness and mindlessness and ALS

2018 ◽  
Author(s):  
Francesco Pagnini ◽  
Deborah Phillips ◽  
Eleonora Volpato ◽  
Paolo Banfi ◽  
Ellen Langer
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Well Being ◽  
Psychological Resilience ◽  
Psychological Well Being ◽  
Psychological Constructs ◽  
The Impact ◽  
Lateral Sclerosis

Mindfulness and mindlessness are two relevant psychological constructs for the field of amyotrophic lateral sclerosis (ALS). When mindful, people are more open, flexible, and aware, and this attitude results in a higher psychological well-being. A mindful attitude is a source of psychological resilience for people with ALS and their caregivers. Conversely, a mindless view about the illness, reducing the whole person’s identify to the diagnosis, represents a threat to their quality of life. Furthermore, preliminary findings seem to suggest that mindfulness is associated with a slower course of the disease. In this chapter we discuss the impact that mindfulness can exert on both the quality and the quantity of life.

scholarly journals Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems?

2016 ◽  
Vol 29 (1) ◽  
pp. 56
Author(s):  
Ana Catarina Pinho ◽  
Edna Gonçalves
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Motor Neurons ◽  
Health Care Professionals ◽  
Large Body ◽  
Holistic Approach ◽  
Health Problems ◽  
Physical Strain ◽  
Lateral Sclerosis

<p><strong>Introduction:</strong> Amyotrophic lateral sclerosis is a rare neurodegenerative disease affecting motor neurons. Patients present with progressive physical impairment, respiratory failure being the main cause of death. A significant portion of patients presents neurobehavioral problems as well. As severe impairment occurs, patients become highly dependent and in general, their families assume the role of primary caregivers, exposing them to stress and other potential causes of disease like insomnia, physical strain from patients’ mobilization and changes on eating habits. The aim of this work is to understand if taking care of patients with amyotrophic lateral sclerosis increases disease and health problems on caregivers.<br /><strong>Material and Methods:</strong> Comprehensive review of the literature published on the electronic databases PubMed and Scopus between 2010 and 2014.<br /><strong>Results:</strong> Eighteen studies met the inclusion criteria. We found that amyotrophic lateral sclerosis caregivers have higher levels of burden, depression and anxiety with lower quality of life. This is associated to age and gender of caregivers, time spent caring, patients’ disability and neurobehavioral changes. Higher sense of support and spirituality on family seem to promote wellbeing.<br /><strong>Discussion:</strong> On our work, we were able to understand that several factors have influenced caregivers’ quality of life and affect their health. Besides, we could understand that the outcomes studied are related between themselves and, as seen in some of the studies, related to patients’ quality of life itself. Consequently, it has become essential to adopt a holistic approach of these patients and their families, fighting the deteriorating risk factors and investing on health promoters.<br /><strong>Conclusion:</strong> Despite the large body of research on family caregiving for amyotrophic lateral sclerosis patients, little has changed and the outcomes measured remain almost the same before and after 2010. The work indicates that caregivers have lower levels of health than the general population. Still additional research is required, in order to better understand and characterized the changes on caregivers’ health. It is nevertheless clear that health care professionals cannot ignore these health changes and need an approach focused not only on patients but also on caregivers.</p>

scholarly journals Dysarthria and quality of life in patients with amyotrophic lateral sclerosis

Revista CEFAC ◽  
2017 ◽  
Vol 19 (5) ◽  
pp. 664-673 ◽  
Author(s):  
Lavoisier Leite Neto ◽  
Ana Carolina Constantini
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Background Information ◽  
Control Group ◽  
Life Questionnaire ◽  
Significance Level ◽  
Assessment Protocol ◽  
The Impact ◽  
Lateral Sclerosis

ABSTRACT Purpose: to analyze the impact of dysarthria on the quality of life in patients with amyotrophic lateral sclerosis. Methods: the study consisted of 32 subjects, divided into two groups (control group and study group) who underwent an initial interview for background information, followed by an evaluation based on the Dysarthria Assessment Protocol and completion of quality of life questionnaire "Living with Dysarthria - (LwD)". Exploratory data analysis was collected through mean, median, SD, minimum and maximum measures. A comparison was performed between the studied groups and a correlation was carried out between scores. The significance level adopted was 5%. Results: according to the findings, all sub-items analyzed by the dysarthria assessment protocol were statically significant (p <0.001) when comparing the groups. Regarding quality of life, a moderate positive correlation (p = 0.0008; Spearman's coefficient = 0.75202) was observed between the total score of the two protocols used, indicating that the higher the degree of dysarthria, the worse the Quality of Life (QOL) of the subject, according to the parameters evaluated. Conclusion: dysarthria affects all speech parameters herein assessed, in varying degrees, negatively impacting communication and quality of life.

scholarly journals Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems?

2016 ◽  
Vol 29 (1) ◽  
pp. 56 ◽  
Author(s):  
Ana Catarina Pinho ◽  
Edna Gonçalves
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Motor Neurons ◽  
Health Care Professionals ◽  
Large Body ◽  
Holistic Approach ◽  
Health Problems ◽  
Physical Strain ◽  
Lateral Sclerosis

<p><strong>Introduction:</strong> Amyotrophic lateral sclerosis is a rare neurodegenerative disease affecting motor neurons. Patients present with progressive physical impairment, respiratory failure being the main cause of death. A significant portion of patients presents neurobehavioral problems as well. As severe impairment occurs, patients become highly dependent and in general, their families assume the role of primary caregivers, exposing them to stress and other potential causes of disease like insomnia, physical strain from patients’ mobilization and changes on eating habits. The aim of this work is to understand if taking care of patients with amyotrophic lateral sclerosis increases disease and health problems on caregivers.<br /><strong>Material and Methods:</strong> Comprehensive review of the literature published on the electronic databases PubMed and Scopus between 2010 and 2014.<br /><strong>Results:</strong> Eighteen studies met the inclusion criteria. We found that amyotrophic lateral sclerosis caregivers have higher levels of burden, depression and anxiety with lower quality of life. This is associated to age and gender of caregivers, time spent caring, patients’ disability and neurobehavioral changes. Higher sense of support and spirituality on family seem to promote wellbeing.<br /><strong>Discussion:</strong> On our work, we were able to understand that several factors have influenced caregivers’ quality of life and affect their health. Besides, we could understand that the outcomes studied are related between themselves and, as seen in some of the studies, related to patients’ quality of life itself. Consequently, it has become essential to adopt a holistic approach of these patients and their families, fighting the deteriorating risk factors and investing on health promoters.<br /><strong>Conclusion:</strong> Despite the large body of research on family caregiving for amyotrophic lateral sclerosis patients, little has changed and the outcomes measured remain almost the same before and after 2010. The work indicates that caregivers have lower levels of health than the general population. Still additional research is required, in order to better understand and characterized the changes on caregivers’ health. It is nevertheless clear that health care professionals cannot ignore these health changes and need an approach focused not only on patients but also on caregivers.</p>

scholarly journals Neuropsychological deficits have only limited impact on psychological well-being in amyotrophic lateral sclerosis

2021 ◽  
Author(s):  
Till Schrempf ◽  
Julia Finsel ◽  
Ingo Uttner ◽  
Albert C. Ludolph ◽  
Dorothée Lulé
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Well Being ◽  
Neuropsychological Deficits ◽  
Neurocognitive Deficits ◽  
Psychological Well Being ◽  
Global Quality Of Life ◽  
The Impact ◽  
Lateral Sclerosis

Abstract Objective To investigate the association between neuropsychological deficits and psychological well-being in amyotrophic lateral sclerosis (ALS). Methods Subjective (Schedule for the Evaluation of the Individual Quality of Life-Direct Weighting, SEIQoL-DW) and global quality of life (QoL; Anamnestic Comparative Self-Assessment, ACSA) as well as depression (ALS-Depression-Inventory, ADI-12) as indicators for psychological well-being were measured in 214 patients with ALS and correlated with neurocognitive performance assessed by the Edinburgh Cognitive and Behavioural ALS Screen (ECAS). Primary caregivers evaluated behaviour. Patients were classified to be cognitively (ALSci) or behaviourally impaired (ALSbi) according to Strong criteria. Results ALSbi patients had poorer psychological well-being than patients without behavioural alterations, while the psychological well-being of patients with and without neurocognitive deficits was comparable. Conclusion The study provides evidence that minor neuropsychological deficits do not interfere with psychological well-being of ALS in contrast to alterations on behavioural level. Thus, abnormalities in individual cognitive domains have limited relevance for the patients’ everyday life in comparison to the impact of behavioural alterations.

scholarly journals Efectos de la pandemia por Covid-19 sobre la calidad de vida de los pacientes con Esclerosis Lateral Amiotrófica

2021 ◽  
Vol 20 (3) ◽  
pp. 581-600
Author(s):  
Sara Bermudo Fuenmayor ◽  
Pedro Jesús Serrano Castro ◽  
Pablo Quiroga Subirana ◽  
Tesifón Parrón Carreño
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Monitoring And Evaluation ◽  
Calidad De Vida ◽  
Global Pandemic ◽  
Para Determinar ◽  
The Impact ◽  
Lateral Sclerosis

Introducción: En los últimos meses, la irrupción del SARS-CoV-2 como pandemia mundial ha causado un impacto devastador en la sanidad a nivel mundial. Los sistemas sanitarios se han visto desbordados, y el seguimiento de aquellos pacientes que requieren un control y evaluación continuos, como es el caso de la Esclerosis Lateral Amiotrófica (ELA), se han visto afectados negativamente.Material y Método: Se ha llevado a cabo una búsqueda de la literatura actual para determinar el impacto de la pandemia de Covid-19 sobre la calidad de vida de los pacientes diagnosticados de Esclerosis Lateral Amiotrófica y su familia.Resultados: El diagnóstico, tratamiento, seguimiento y cuidados domiciliarios de estos pacientes se han visto modificados, adaptándolos en la medida de los posible, a la tecnología y los recursos disponibles para tratar de reducir al mínimo la pérdida de calidad de vida de los pacientes diagnosticados de Esclerosis Lateral Amiotrófica y asegurando la atención integral.Conclusión: A pesar de los numerosos esfuerzo y avances en la investigación, tanto en el caso de la ELA como en la COVID-19, queda mucho camino por andar. Introduction: In recent months, the emergence of SARS-CoV-2 as a global pandemic has caused a devastating impact on health worldwide. Health systems have been overwhelmed, and the follow-up of those patients who require continuous monitoring and evaluation, such as Amyotrophic Lateral Sclerosis (ALS), have been negatively affected.Material and method: A search of the current literature has been carried out to determine the impact of the Covid-19 pandemic on the quality of life of patients diagnosed with Amyotrophic Lateral Sclerosis and their family.Results:The diagnosis, treatment, follow-up and home care of these patients have been modified, adapting them as much as possible to the technology and available resources to try to minimize the loss of quality of life of patients diagnosed with Sclerosis Amyotrophic lateral and ensuring comprehensive care.Conclusion: Despite numerous efforts and advances in research, both in the case of ALS and COVID-19, there is still a long way to go.

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.

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