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.

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.

scholarly journals Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature

2019 ◽  
Vol 267 (3) ◽  
pp. 607-615 ◽  
Author(s):  
Rhiannon Edge ◽  
◽  
Roger Mills ◽  
Alan Tennant ◽  
Peter J. Diggle ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
National Study ◽  
Future Research ◽  
Depression And Anxiety ◽  
Patient Reported ◽  
Lateral Sclerosis

Abstract Introduction The importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent. We explored the relationships between pain, depression, anxiety and QoL to reconcile the previous contrasting findings and inform future research and clinical practice. Methods Patient-reported outcomes were obtained as part of the Trajectories of Outcomes in Neurological Conditions study. Mood and QoL scales underwent Rasch analysis. Correlation coefficients examined the strength of association between variables of interest. A bivariate regression model was developed to examine the effects of pain, depression and anxiety on joint psychological and physical QoL domains. Results Of 636 people with ALS, 69% reported pain, of these most had mild pain. Seven percent (7%) of participants exceeded published cutoffs for probable depression and 14% had probable anxiety. Pain, depression and anxiety all influence quality of life; depression has a significant effect on both physical and psychological domains of QoL, whereas pain affects physical QoL and anxiety psychological QoL. Conclusions These results show the importance of expressing quality of life in a conceptually appropriate way, as failing to take account of the multidimensional nature of QoL can result in important nuances being overlooked. Clinicians must be aware that pain, depression and anxiety all worsen QoL across their ranges, and not just when pain is severe or when anxiety or depression reach case level.

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 The optimisation of noninvasive ventilation in amyotrophic lateral sclerosis: a systematic review

2019 ◽  
Vol 54 (3) ◽  
pp. 1900261 ◽  
Author(s):  
David O'Brien ◽  
Theocharis Stavroulakis ◽  
Susan Baxter ◽  
Paul Norman ◽  
Stephen Bianchi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Noninvasive Ventilation ◽  
Grey Literature ◽  
Multidisciplinary Care ◽  
Future Research ◽  
Eligibility Criteria ◽  
Respiratory Management ◽  
Lateral Sclerosis

BackgroundNoninvasive ventilation (NIV) prolongs survival and quality of life in amyotrophic lateral sclerosis (ALS); however, its benefits depend upon the optimisation of both ventilation and adherence. We aimed to identify factors associated with effective initiation and ongoing use of NIV in ALS to develop evidence-based guidance and identify areas for further research.MethodsWe searched 11 electronic databases (January 1998 to May 2018) for all types of quantitative and qualitative studies. Supplementary grey literature searches were conducted. Records were screened against eligibility criteria, data were extracted from included studies and risk of bias was assessed. We present findings using a narrative synthesis.ResultsWe screened 2430 unique records and included 52 quantitative and six qualitative papers. Factors reported to be associated with NIV optimisation included coordinated multidisciplinary care, place of initiation, selection of interfaces, ventilator modes and settings appropriate for the individual patient, and adequate secretion management. The literature indicated that patients with significant bulbar dysfunction can still derive considerable benefit from NIV if their needs are met. Research emphasises that obstructive airway events, mask leak and uncontrolled secretions should be addressed by adjustments to the interface and machine settings, and the concomitant use of cough augmentation.ConclusionThis review highlights that NIV optimisation requires an individualised approach to respiratory management tailored to the differing needs of each patient. Ultimately, this should lead to improved survival and quality of life. This review expands on recommendations in current international guidelines for NIV use in ALS and identifies areas for future research.

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 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.

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 Θετικές παρεμβάσεις στη Γνωσιακή-Συμπεριφορική Ψυχοθεραπεία

2020 ◽  
Vol 19 (3) ◽  
pp. 297
Author(s):  
Πασχαλία Μυτσκίδου ◽  
Βλοντάκης Ιωάννης
Keyword(s):  
Anxiety Disorders ◽  
Well Being ◽  
Behavioural Therapy ◽  
Depression And Anxiety ◽  
Cognitive Behavioural ◽  
Preliminary Validation ◽  
Life Therapy ◽  
Hope Therapy

Cognitive-Behavioural Therapy (CBT) is a well-established, evidence-based psychotherapy. Although it is the therapy of choice for both depression and anxiety disorders, many patients remain symptomatic after termination of their treatment, while relapses are not uncommon in the long-term follow-ups. Over time, different techniques have beenproposed in order to enrich cognitive-behavioural psychotherapy and increase its effectiveness. From the field of Positive Psychology, three psychotherapeutic strategies, Well-Being Therapy, Hope Therapy and Quality of Life Therapy, have been applied as additional ingredients in cognitive-behavioral packages. They are applied either as relapse prevention or as therapeutic strategies, in patients with affective and anxiety disorders who failed to respond to standard psychotherapeutic treatments. This paper presents the clinical and conceptual framework, as well as the structure and application of each strategy. Their potential clinical usefulness and results of preliminary validation studies are presented. Finally, their contribution in enriching the effectiveness of CBT is discussed.

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