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 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.

Psychological well-being of older Chinese immigrants living in Australia: a comparison with older Caucasians

2016 ◽  
Vol 28 (10) ◽  
pp. 1671-1679 ◽  
Author(s):  
Xiaoping Lin ◽  
Christina Bryant ◽  
Jennifer Boldero ◽  
Briony Dow
Keyword(s):  
Quality Of Life ◽  
Depression Scale ◽  
Chinese Immigrants ◽  
Well Being ◽  
Community Dwelling ◽  
Life Questionnaire ◽  
Psychological Well Being ◽  
Older Chinese ◽  
The Impact

ABSTRACTBackground:Few current studies explore psychological well-being among older Chinese immigrants in Australia. The study addressed this gap and provided preliminary data on psychological well-being among this group. Four indicators, namely depression, anxiety, loneliness, and quality of life, were used to present a comprehensive picture of psychological well-being.Methods:Participants were two groups of community-dwelling older people, specifically 59 Chinese immigrants and 60 Australian-born people (median age=77 and 73, respectively). Data were collected through standardized interviews. The Geriatric Depression Scale, the Hospital Anxiety and Depression Scale, the de Jong Gierveld Loneliness Scale and the WHO Quality of Life questionnaire were used to measure depression, anxiety, loneliness, and quality of life, respectively.Results:Chinese participants’ median quality of life score was higher than the scale mid-point, indicating relatively high levels of quality of life. However, 10% exhibited symptoms of depression, 6% had symptoms of anxiety, and 49% felt lonely. Compared to Australian participants, Chinese participants reported poorer quality of life and higher levels of loneliness. Importantly, the difference in quality of life remained when the impact of socio-demographic factors was controlled for.Conclusions:This study was the first to use multiple indicators to explore psychological well-being among older Chinese immigrants in Australia. Its results suggest that their psychological well-being might be worse than that of Australian-born people when using loneliness and quality of life as indicators. In particular, loneliness is a common psychological problem among this group, and there is a need for public awareness of this problem.

scholarly journals The Quality of Life and Psychosocial Implications of Cancer-Related Lower-Extremity Lymphedema: A Systematic Review of the Literature

2020 ◽  
Vol 9 (10) ◽  
pp. 3200 ◽  
Author(s):  
Catharine Bowman ◽  
Katherine-Ann Piedalue ◽  
Mohamad Baydoun ◽  
Linda E. Carlson
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Lower Extremity ◽  
Health Care Professionals ◽  
Negative Relationship ◽  
Well Being ◽  
Observational Research ◽  
Cross Sectional ◽  
The Impact

Lower-extremity lymphedema (LEL) is a progressive, lifelong complication of cancer that places a substantial burden upon cancer survivors’ quality of life (QOL) and psychosocial well-being. Despite its prevalence, cancer-related LEL is inconsistently diagnosed, treated, and poorly recognized by health care professionals. The purpose of this systematic review was to summarize and appraise the quantitative literature evaluating the impact of cancer-related LEL on patients’ psychosocial well-being and QOL. Three databases (PubMed, PROQuest, and Scopus) were searched for observational research articles published before May 1st, 2020. Twenty-one articles were eligible (cross-sectional (n = 16), prospective cohort designs (n = 3), and retrospective cohort designs (n = 2)). The majority of studies reported a negative relationship between cancer-related LEL and global QOL and/or one or more psychosocial domains including (1) physical and functional; (2) psycho-emotional; (3) social, relational and financial. A greater number of LEL symptoms and higher LEL severity were associated with poorer QOL. Although the evidence to date suggests a negative relationship between cancer-related LEL and patients’ QOL and psychosocial well-being, there is a substantial need for longitudinal analyses to examine the directionality and temporality of this effect in order to inform cancer survivorship care modelling and improve patient outcomes after cancer.

The impact of anxiety and depression in the quality of life and psychological well-being of Greek hematological cancer patients on chemotherapy

2019 ◽  
Vol 25 (2) ◽  
pp. 201-213
Author(s):  
Thalia Bellali ◽  
Georgios Manomenidis ◽  
Eirini Meramveliotaki ◽  
Evgenia Minasidou ◽  
Petros Galanis
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Well Being ◽  
Anxiety And Depression ◽  
Hematological Cancer ◽  
Psychological Well Being ◽  
The Impact

Comparing the Impact of Cancer and Treatment-Related Effects on Psychological Well-being and Quality of Life Between Hong Kong Survivors of Childhood Solid Tumors and Leukemia

2019 ◽  
Vol 43 (6) ◽  
pp. 446-454 ◽  
Author(s):  
Laurie Long Kwan Ho ◽  
William Ho Cheung Li ◽  
Ka Yan Ho ◽  
Ankie Tan Cheung ◽  
Godfrey Chi Fung Chan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hong Kong ◽  
Solid Tumors ◽  
Well Being ◽  
Psychological Well Being ◽  
The Impact

scholarly journals Quality of life among relatives of patients with amyotrophic lateral sclerosis: A prospective and longitudinal study

2021 ◽  
pp. 1-9
Author(s):  
Birgitta Jakobsson Larsson ◽  
Anneli Ozanne ◽  
Karin Nordin ◽  
Ingela Nygren
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Physical Function ◽  
Well Being ◽  
Individual Quality ◽  
Time Points ◽  
Disease Trajectory ◽  
Individual Quality Of Life ◽  
Lateral Sclerosis

Abstract Objective Relatives are often central in caring for patients with amyotrophic lateral sclerosis (ALS), involving considerable physical, emotional, and social challenges. The aim of this study was to describe individual quality of life (iQoL) among relatives of patients with ALS, from diagnosis through disease progression. Method A total of 31 relatives were included. Data collection was performed at five time points: 1–3 months after their relatives had been diagnosed with ALS and every 6 months for 2 years. Quality of life was determined using the Schedule of Evaluation of Individual Quality of Life — Direct Weighting (SEIQoL-DW), emotional distress with the Hospital Anxiety and Depression Scale (HADS), and the illness severity of the patients was determined with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R). Results The SEIQoL-DW involves participants nominating the important life areas. The most nominated areas were family, friends, health, and leisure. Although most relatives had overall good and stable iQoL, several had scores indicating poor iQoL on some occasions during the disease trajectory. The relatives’ iQoL correlated with emotional well-being and the patient's physical function at different time points. Significant of result Social relations, emotional well-being, and rapid decline in the patient's physical function influence the relatives’ iQoL. Measuring both emotional well-being and iQoL, with a focus on the relatives’ own descriptions of perceived iQoL and those factors contributing to their iQoL during the disease trajectory may improve the possibility of identifying and supporting those relatives with poor iQoL.

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>

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