scholarly journals Psychometric Properties of Preference-Based Measures for Economic Evaluation in Amyotrophic Lateral Sclerosis: A Systematic Review

2021 ◽  
Vol 2021 ◽  
pp. 1-13
Author(s):  
Nicole Peters ◽  
Vanina Dal Bello-Haas ◽  
Tara Packham ◽  
Ava Mehdipour ◽  
Ayse Kuspinar
Keyword(s):  
Systematic Review ◽  
Amyotrophic Lateral Sclerosis ◽  
Psychometric Properties ◽  
Full Text ◽  
Convergent Validity ◽  
Well Being ◽  
Global Scale ◽  
Meta Analyses ◽  
Lateral Sclerosis

Objective. The aim of this review was to synthesize the psychometric properties of generic preference-based measures (PBMs) of health-related quality of life (HRQL) in Amyotrophic Lateral Sclerosis (ALS). Methods. A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases were searched from inception to April 2019: OVID Medline, Embase, PsycINFO, and CINAHL. Studies were included if (1) the sample represented individuals with ALS, (2) a generic PBM was utilized and reported on, and (3) information on the psychometric property of a generic PBM was provided. Results. Ninety-one articles were screened, and 39 full-text articles were reviewed. Seven full-text articles were included in this review. The mean age of participants ranged from 58.1 to 63.8 years, and mean time since diagnosis ranged from 20.5 to 44.6 months. Two generic PBMs were found, the EQ-5D-3L (n = 6) and the Quality of Well-Being Self-Administered (QWB-SA) scale (n = 1). Convergent validity of the EQ-5D-3L was large against a global scale of self-perceived health (r = 0.60) and small to large against ALS specific HRQL measures (r = 0.19 to 0.75). For the QWB-SA scale, correlations were small against a generic measure (r = 0.21) and large against ALS specific measures (r = 0.55). The EQ-5D-3L discriminated across different disease severity; however, floor effects were reported. Conclusion. This review highlights the need for more rigorously designed studies to assess the psychometric properties of generic PBMs in ALS and the development of an ALS specific PBM that adequately reflects the health concerns of individuals with ALS.

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 A systematic review of physical activity and quality of life and well-being

2020 ◽  
Vol 10 (5) ◽  
pp. 1098-1109 ◽  
Author(s):  
David X Marquez ◽  
Susan Aguiñaga ◽  
Priscilla M Vásquez ◽  
David E Conroy ◽  
Kirk I Erickson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Systematic Review ◽  
Well Being ◽  
Evidence Base ◽  
Committee Report ◽  
High Quality Research ◽  
Physical Activity Guidelines ◽  
Meta Analyses

Abstract Maintaining or improving quality of life (QoL) and well-being is a universal goal across the lifespan. Being physically active has been suggested as one way to enhance QoL and well-being. In this systematic review, conducted in part for the 2018 U.S. Health and Human Services Physical Activity Guidelines for Americans Scientific Advisory Committee Report, we examined the relationship between physical activity (PA) and QoL and well-being experienced by the general population across the lifespan and by persons with psychiatric and neurologic conditions. Systematic reviews, meta-analyses, and pooled analyses from 2006 to 2018 were used for the evidence base. Strong evidence (predominantly from randomized controlled trials [RCTs]) demonstrated that, for adults aged 18–65 years and older adults (primarily 65 years and older), PA improves QoL and well-being when compared with minimal or no-treatment controls. Moderate evidence indicated that PA improves QoL and well-being in individuals with schizophrenia and Parkinson’s disease, and limited evidence indicated that PA improves QoL and well-being for youth and for adults with major clinical depression or bipolar disorder. Insufficient evidence existed for individuals with dementia because of a small number of studies with mixed results. Future high-quality research designs should include RCTs involving longer interventions testing different modes and intensities of PA in diverse populations of healthy people and individuals with cognitive (e.g., dementia) and mental health conditions (e.g., schizophrenia) to precisely characterize the effects of different forms of PA on aspects of QoL and well-being.

Quality of life and functional independence in amyotrophic lateral sclerosis: A systematic review

2020 ◽  
Vol 111 ◽  
pp. 1-11 ◽  
Author(s):  
Jéssica Paloma Rosa Silva ◽  
José Bomfim Santiago Júnior ◽  
Elizabete Lima dos Santos ◽  
Fernanda Oliveira de Carvalho ◽  
Iandra Maria Pinheiro de França Costa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Amyotrophic Lateral Sclerosis ◽  
Functional Independence ◽  
Lateral Sclerosis

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 Validity and reliability of the Brazilian version of the Patient Dignity Inventory (PDI – Br)

2021 ◽  
Vol 29 ◽  
Author(s):  
Suzana Cristina Teixeira Donato ◽  
Toshio Chiba ◽  
Ricardo Tavares de Carvalho ◽  
Marina de Góes Salvetti
Keyword(s):  
Psychometric Properties ◽  
Convergent Validity ◽  
Well Being ◽  
Psychometric Validation ◽  
Strong Correlations ◽  
Validity And Reliability ◽  
Existential Suffering ◽  
Brazilian Version ◽  
Spiritual Well Being

Objective: to perform the psychometric validation of the Brazilian version of the Patient Dignity Inventory (PDI – Br) in patients with advanced diseases in palliative care. Method: a methodological study to verify the psychometric properties of the Patient Dignity Inventory (PDI – Br) instrument, through validity and reliability tests. Results: the exploratory factor analysis showed a factorial solution with three factors, responsible for 40.9% of the explained variance, with adequate internal consistency for the Presence of Symptoms (α=0.859), Dependence (α=0.871), and Existential Suffering (α=0.759) domains. The test-retest was performed and indicated moderate to strong correlations. Convergent validity demonstrated a positive correlation between the Presence of Symptoms and the sadness (r=0.443) and anxiety (r=0.464) variables. Weak negative correlations were observed between the PDI – Br domains and functionality, spiritual well-being and quality of life. Conclusion: composed of three domains and 25 items, the PDI – Br instrument presented satisfactory psychometric properties for its use in our environment, through the evidence of validity and reliability.

Psychological research in amyotrophic lateral sclerosis: Past, present, and future

2018 ◽  
Author(s):  
Tamlyn J. Watermeyer ◽  
Laura H. Goldstein
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Well Being ◽  
Psychological Research ◽  
Behavioural Therapy ◽  
Future Research ◽  
Psychological Treatments ◽  
Dignity Therapy ◽  
Cognitive Behavioural ◽  
Lateral Sclerosis

This chapter, of particular interest to those interested in psychological treatments for people with amyotrophic lateral sclerosis (ALS), outlines earlier work that sought to identify correlates of reduced well-being and quality of life in people with ALS and delineates possible targets for intervention. In this context, the chapter then evaluates several studies that have investigated psychological interventions for optimizing well-being in people with ALS and their caregivers. The chapter reviews current efforts to address the paucity of interventional research in this patient group, focusing on five therapies that have so far been evaluated for treatment efficacy. These therapies include hypnosis, mindfulness, cognitive behavioural therapy, expressive disclosure therapy, and dignity therapy. The main findings from these studies and their clinical implications for people with ALS and their families are discussed. Recommendations for future research are considered, together with a discussion of the implementation of such interventions in therapeutic or multidisciplinary settings.

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 Psychometric Properties of Cognitive Assessment in Amyotrophic Lateral Sclerosis: A Systematic Review

2020 ◽  
Vol Volume 11 ◽  
pp. 181-194
Author(s):  
Tina Taule ◽  
Margaret Søvik ◽  
Regina Küfner Lein ◽  
Eike Wehling ◽  
Jörg Aßmus ◽  
...  
Keyword(s):  
Systematic Review ◽  
Amyotrophic Lateral Sclerosis ◽  
Psychometric Properties ◽  
Cognitive Assessment ◽  
Lateral Sclerosis
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