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.

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.

scholarly journals Quality of life and muscle strength improvement in an amyotrophic lateral sclerosis patient after nutraceuticals

2020 ◽  
Vol 15 (3) ◽  
pp. 221-227
Author(s):  
Jozélio Freire de Carvalho ◽  
◽  
João Ricardo Yamasita ◽  
Leonid Churilov ◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Muscle Strength ◽  
Therapeutic Option ◽  
Amyotrophic Lateral Sclerosis Patient ◽  
Well Being ◽  
Marrow Transplant ◽  
Tea Extract ◽  
Lateral Sclerosis

The objective of the article was to describe a patient with amyotrophic lateral sclerosis (ALS) treated with nutraceuticals who had a better quality of life and improved muscle strength. A 65-year-old male patient with a past medical history of gout was diagnosed with amyotrophic lateral sclerosis in 2016. He received intravenous immunoglobulin and prednisone, but no improvement was observed. In 2018, he was diagnosed with multiple myeloma, submitted to a bone marrow transplant, and initiated riluzole. After 2 months, he came to our private clinic; he could not walk anymore and used outpatient nasal ventilator equipment. Beck anxiety inventory (BAI) was 20 [normal range (nr): < 8], Beck depression inventory (BDI) was 12 (nr: < 10), Bristol stool form scale (BSTS) was 5 (nr: 3–4), and there were 7 symptoms of dysbiosis. Analogic visual scale (Lickert scale) for well-being was 5.0. We suspended the colchicine, added vitamin D3, creatine, vitamin C, N-acetyl cysteine, 5-hydroxytryptamine, B1, and B6 vitamins. Dysbiosis was also treated. After 2 months, he returned feeling much better, BAI and BDI reduced BDI to 11, and BSFS normalized. Following this evaluation, a nutraceutical prescription was added: methylfolate, zinc, magnesium, green tea extract, Ginkgo biloba, lipoic acid, pyrroloquinoline quinone, vitamin E, coenzyme Q10, and resveratrol. After 7 months, he was feeling very well; BAI and BDI were normal, he gained weight. He felt a marked improvement in his muscle strength, and he gained again the capacity of eating alone, his quality of life improved, and AVS well-being was 8.0. This report illustrates a demonstrative case of a patient with ALS treated with nutraceuticals and improved his quality of life and muscle strength. It may be an alternative therapeutic option for such patients.

Individual quality of life: can it be accounted for by psychological or subjective well-being?

2006 ◽  
Vol 82 (3) ◽  
pp. 443-461 ◽  
Author(s):  
L. Ring ◽  
S. Höfer ◽  
H. McGee ◽  
A. Hickey ◽  
C. A. O’Boyle
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Individual Quality ◽  
Subjective Well Being ◽  
Individual Quality Of Life

Schedule for the Evaluation of Individual Quality of Life--Direct Weight

1997 ◽  
Author(s):  
John Browne ◽  
Ciaran A. O'Boyle ◽  
Hannah M. McGee ◽  
Nicholas J. McDonald ◽  
C. R. B. Joyce
Keyword(s):  
Quality Of Life ◽  
Individual Quality ◽  
Individual Quality Of Life
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