Predictors of distress in amyotrophic lateral sclerosis: A systematic review

Fisher, Peter; Dodd, Rachel; Barrow, Emma; Makin, Selina M; Cherry, Mary Gemma

doi:10.1080/23311908.2019.1608031

Cited by 8 publications

(11 citation statements)

References 36 publications

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“…Moreover, only repetitive negative thinking, "negative" maladaptive metacognitive beliefs about the danger, and uncontrollability of worry and "positive" maladaptive metacognitive beliefs about worry made significant contributions to the final model. This supports previous research indicating that maladaptive metacognitive beliefs are associated with emotional distress in individuals with physical health difficulties (Brown and Fernie, 2015;Cook et al, 2015a,b;Fisher and Noble, 2017;Heffer-Rahn and Fisher, 2018;Purewal and Fisher, 2018) and reflects previous findings that physical functioning, time since diagnosis, and demographic factors are inconsistent predictors of emotional distress in people with ALS (De groot et al, 2007;Gauthier et al, 2007;Cupp et al, 2011;Matuz et al, 2015;Fisher et al, 2019b).…”

Section: Discussionsupporting

confidence: 90%

“…There is growing support for the clinical applicability of the S-REF model to emotional distress in physical health conditions (Capobianco et al, 2020)-specifically, for people with cancer (Butow et al, 2015;Cook et al, 2015a,b), diabetes (Purewal and Fisher, 2018), epilepsy (Fisher and Noble, 2017;Fisher et al, 2018), multiple sclerosis (Heffer-Rahn and Fisher, 2018), chronic fatigue syndrome (Maher-Edwards et al, 2011), fibromyalgia (Kollmann et al, 2016), cardiovascular disease (Anderson et al, 2019), and Parkinson's disease (Brown and Fernie, 2015). Preliminary evidence indicates that MCT may be an effective and tolerable intervention for adults with physical health difficulties (Cherry et al, 2019;Fisher et al, 2019b;McPhillips et al, 2019). However, the utility of the S-REF model in understanding emotional distress in people with ALS has not been studied.…”

Section: Introductionmentioning

confidence: 99%

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The Association Between Maladaptive Metacognitive Beliefs and Emotional Distress in People Living With Amyotrophic Lateral Sclerosis

et al. 2021

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ObjectiveApproximately half of all people living with amyotrophic lateral sclerosis (ALS) experience persistent or recurrent emotional distress, yet little is known about the psychological processes that maintain emotional distress in this population. The self-regulatory executive functioning (S-REF) model specifies that maladaptive metacognitive beliefs and processes are central to the development and maintenance of emotional distress. This study explored whether maladaptive metacognitive beliefs are associated with emotional distress after controlling for demographic factors, time since diagnosis, and current level of physical functioning.DesignIn a cross-sectional design, 75 adults with a diagnosis of ALS completed self-report questionnaires. Participants had a mean age of 60.40 years, mean duration of symptoms 63.92 months, and male:female gender ratio of 14:11.Main Outcome MeasuresQuestionnaires assessed emotional distress (HADS, adapted for ALS), physical functioning (ALSFRS-R), repetitive negative thinking (RTQ-10), metacognitive beliefs (MCQ-30), and demographic factors.ResultsMaladaptive metacognitive beliefs explained additional variance in emotional distress after controlling for age, gender, time since diagnosis, physical functioning, and repetitive negative thinking. Repetitive negative thinking partially mediated the relationships between positive and negative metacognitive beliefs and emotional distress.ConclusionsThese data support the utility of the metacognitive model in understanding emotional distress in people with ALS. Examination of the temporal relationship between maladaptive metacognitive beliefs and emotional distress in people living with ALS may help to guide the development of therapeutic approaches.

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Section: Discussionsupporting

confidence: 90%

Section: Introductionmentioning

confidence: 99%

The Association Between Maladaptive Metacognitive Beliefs and Emotional Distress in People Living With Amyotrophic Lateral Sclerosis

et al. 2021

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“…Affective ToM abilities, i.e., those considered in our review, seem to be associated with "mental health" quality of life [40]. Moreover, a recent review about predictors of distress in ALS showed that the only relevant factor is represented by lower levels of perceived social support [68]. Since the ability to adequately experience, recognize and respond to emotional stimuli is a constitutive aspect of social relationships, the assessment and management of emotional abilities alterations is very important for maintaining positive and supportive interpersonal exchanges.…”

Section: Discussionmentioning

confidence: 71%

Emotional Processing and Experience in Amyotrophic Lateral Sclerosis: A Systematic and Critical Review

et al. 2021

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Even though increasing literature describes changes in emotional processing in Amyotrophic Lateral Sclerosis (ALS), efforts to summarize relevant findings are lacking in the field. A systematic literature review was performed to provide a critical and up-to-date account of emotional abilities in ALS. References were identified by searches of PubMed, Web of Science and Scopus (1980–2021, English literature), with the following key terms: (“Amyotrophic Lateral Sclerosis” or “Primary Lateral Sclerosis” or “Motor Neuron”) and “Emotion*” and (“Processing” or “Attribution” or “Elaboration” or “Perception” or “Recognition”). Studies concerning only caregivers, pseudobulbar affect, and social cognition were excluded. Forty-one articles were included, all concerning ALS, and seven topics were identified: Emotion recognition, Emotional responsiveness, Emotional reactivity, Faces approachability rating, Valence rating, Memory for emotional materials and Alexithymia. The majority of these aspects have only been sparsely addressed. The evidence confirms altered emotional processing in ALS. The most consistent findings regard the recognition of facial expressions for negative emotions, but also alterations in the subjective responsiveness to emotional stimuli (arousal, valence and approachability), in psychophysiological and cerebral reactivity and in emotional memory, together with alexithymia traits, were reported. According to this evidence, emotional abilities should be included in the clinical assessment and therapeutic interventions.

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“…decreased intimacy, increased conflict). [5][6][7] Early adjustment challenges are important to address because of the following:…”

Section: Introductionmentioning

confidence: 99%

“…1,2 Distinct from other chronic illnesses, dyads with NDDs cope with a combination of progressive cognitive, behavioral, and/or socio-emotional changes that can impact their identity and relationships. 5,6,[11][12][13] Individuals with NDDs may lack insight into their symptoms, deny the diagnosis, or avoid conversations about the future. 11,12 Care partners may feel a responsibility to ensure that their partner engages with care, accepts the diagnosis, and plans for the future.…”

Section: Introductionmentioning

confidence: 99%

Together from the start: A transdiagnostic framework for early dyadic interventions for neurodegenerative diseases

Bannon

Grunberg

Manglani

et al. 2022

J American Geriatrics Society

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Background Neurodegenerative diseases (NDDs) are increasingly prevalent and radically alter the lives of individuals and their informal care partners (together called a dyad). As symptoms progress, dyads are at risk for elevated emotional distress and declines in relationship functioning and quality of life. Psychosocial interventions delivered to dyads early after diagnosis have successfully prevented chronic emotional distress across several chronic illnesses including cancer and acute brain injury. Dyads with NDD could benefit from such interventions, however, they are limited. Because NDDs have symptom profiles that are distinct from other chronic illnesses, they require a unique framework and interventions. Given the limited dyadic interventions and unified symptoms across NDDs, a transdiagnostic framework may help to enhance scalability and efficiency. To address this problem, we developed a transdiagnostic framework that cuts across NDD physical and emotional diagnoses to inform cost‐effective and sustainable NDD dyadic interventions. Methods To develop this framework, we conducted: (1) a narrative review on dyadic adjustment and existent dyadic interventions for those with NDDs, and (2) integrated findings to develop our NDD transdiagnostic framework for dyadic interventions early after diagnosis. Results Findings revealed no existent dyadic interventions for NDDs delivered shortly after diagnosis. Among available interventions, all were delivered later in disease progression, thereby focusing on dyadic challenges at more advanced stages. In addition, although research emphasized the influence of individual, dyadic, and contextual factors on dyads' early adjustment to NDDs, no conceptual model has been developed. Informed by theory and current research, we introduce an NDD transdiagnostic framework for couples' early biopsychosocial adjustment. This framework includes NDD specific: contextual factors, illness‐related factors, individual and dyadic stressors, adaptive coping strategies, and dyads' resources. Conclusions Our NDD transdiagnostic framework can be used to inform early dyadic psychosocial interventions that cut across all NDDs. This approach has important implications for implementation and scalability.

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Predictors of distress in amyotrophic lateral sclerosis: A systematic review

Cited by 8 publications

References 36 publications

The Association Between Maladaptive Metacognitive Beliefs and Emotional Distress in People Living With Amyotrophic Lateral Sclerosis

The Association Between Maladaptive Metacognitive Beliefs and Emotional Distress in People Living With Amyotrophic Lateral Sclerosis

Emotional Processing and Experience in Amyotrophic Lateral Sclerosis: A Systematic and Critical Review

Together from the start: A transdiagnostic framework for early dyadic interventions for neurodegenerative diseases

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