Treatment of fatigue in amyotrophic lateral sclerosis/motor neuron disease

Gibbons, Chris; Pagnini, Francesco; Friede, Tim; Young, Carolyn

doi:10.1002/14651858.cd011005.pub2

Cited by 31 publications

(51 citation statements)

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“…However, standardized treatment for fatigue in PD patients does exist, inclusive of a balanced medication regime targeting movement disorder (e.g., dopaminergic agents) and depression (e.g., psychostimulants and antidepressants) combined with a rehabilitation program (e.g., cognitive behavior therapy and graded exercise) (5). Furthermore, research has demonstrated that pharmacological (modafinil) and non-pharmacological (respiratory exercise and repetitive transcranial magnetic stimulation) management may be possible treatment options for fatigue in ALS patients (43). These reports indicate that the appropriate combination of pharmacological and nonpharmacological treatments could be promising treatment options for alleviating fatigue and the severity of ataxia in SCA3 patients.…”

Section: Discussionmentioning

confidence: 99%

Ataxic Severity Is Positively Correlated With Fatigue in Spinocerebellar Ataxia Type 3 Patients

Yang

Chen

et al. 2020

Front. Neurol.

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Background: Spinocerebellar ataxia type 3 (SCA3) is an inherited form of ataxia that leads to progressive neurodegeneration. Fatigue is a common non-motor symptom in SCA3 and other neurodegenerative diseases, such as Parkinson's disease (PD) and amyotrophic lateral sclerosis (ALS). Although risk factors to fatigue in these diseases have been thoroughly studied, whether or not fatigue can affect clinical phenotypes has yet to be investigated. Methods: Ninety-one molecularly confirmed SCA3 patients and 85 age-and sex-matched controls were recruited for this study. The level of fatigue was measured using the 14-item Fatigue Scale (FS-14), and the risk factors to fatigue and how fatigue correlates with clinical phenotypes were studied using multivariable linear regression models. Results: We found that the severity was significantly higher in the SCA3 group than in the control group (9.30 ± 3.04% vs. 3.94 ± 2.66, P = 0.000). Daytime somnolence (β = 0.209, P = 0.002), severity of ataxia (β = 0.081, P = 0.006), and poor sleep quality (β = 0.187, P = 0.037) were found to have a positive relationship with fatigue. Although fatigue had no relationship with age at onset or ataxic progression, we found that it did have a positive relationship with the severity of ataxia (β = 7.009, P = 0.014). Conclusions: The high level of fatigue and the impact of fatigue on the clinical manifestation of SCA3 patients suggest that fatigue plays a large role in the pathogenesis of SCA3, thus demonstrating the need for intervention and treatment options in this patient cohort.

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Section: Discussionmentioning

confidence: 99%

Ataxic Severity Is Positively Correlated With Fatigue in Spinocerebellar Ataxia Type 3 Patients

Yang

Chen

et al. 2020

Front. Neurol.

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“…Pain appears to continue to be an uncontrolled symptom for many PALS, in keeping with prior studies suggesting this is an under recognized and undertreated symptom (24)(25)(26). Fatigue was also noted by a large percentage of caregivers and PALS and available treatments for this symptom are limited and of unclear efficacy (27,28). Quality of life assessment instruments exist which incorporate evaluation of these diverse, impactful symptoms (29)(30)(31)(32)(33).…”

Section: Discussionmentioning

confidence: 99%

Understanding the needs of people with ALS: a national survey of patients and caregivers

Brizzi

Bridges

Yersak

et al. 2020

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Objective: Amyotrophic lateral sclerosis (ALS) has profound effects on people with ALS (PALS) and caregivers. There is a paucity of research detailing and comparing PALS and caregiver day-today perspectives of ALS. Methods: A survey developed collaboratively by The ALS Association and a panel of experts in ALS care was designed to broadly sample the experience of PALS and caregivers with respect to physical and emotional symptoms, the efficacy of treatment approaches, and goals for future treatments. Specific physical symptoms assessed consisted of fatigue, pain, weakness, shortness of breath, difficulty sleeping, speech problems, depression and other mood changes, and cognitive changes. PALS, caregivers of living patients with ALS (C-LPALS), and caregivers of deceased patients with ALS (C-DPALS) were contacted by email to participate in a 30-minute online survey. Results: 887 PALS, 444 C-LPALS, and 193 C-DPALS responded to the survey. In comparison to PALS, C-LPALS perceived that PALS had significantly higher rates of all surveyed symptoms except for pain and weakness. Caregivers self-reported higher stress levels than PALS (p < 0.001). 35% (135/383) of caregivers reported experiencing a devastating or near devastating financial impact of ALS and 64% (247/383) of caregivers felt their own health had worsened. Caregivers were significantly less likely to perceive a positive response to treatment in comparison to PALS (p < 0.001). Conclusions: PALS and caregivers report a number of symptoms beyond weakness that affect daily life which may be targets of future interventions. There are opportunities to improve services and care for caregivers to reduce the burden of illness.

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“…A recent survey-study in patients with ALS report that fatigue is the most prevalent impairment and at the same time the least treated [ 35 ]. There is, unfortunately, not enough evidence to make conclusions about effectiveness of pharmacological or non-pharmacological treatments [ 36 ]. Thus, high-quality studies on intervention to improve fatigue in ALS are much needed.…”

Section: Discussionmentioning

confidence: 99%

Disability and Contextual Factors in Patients with Amyotrophic Lateral Sclerosis - A Three-Year Observational Study

Sandstedt

Littorin

Johansson

et al. 2018

JND

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Background:Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease characterized by muscle weakness and wasting. Observational natural history studies can give information on body function/structure impairments, activity limitations and participation restrictions, i.e. disability. Information needed to plan and develop care and support.Objective:To describe and explore disease severity and impairments, activity limitations, participation restrictions and contextual factors over time. In specific, to explore concurrent presence of cognitive impairment, fatigue, anxiety, depression and pain, and whether these impairments were related to disease severity.Methods:In this three-year observational study, 60 patients with ALS were included at baseline. Follow-ups were performed every 6 months unless participants had deceased or declined participation. Data was collected from medical records, and by study-specific and standardized questionnaires administrated during home visits.Results:Regardless of disease severity; fatigue, anxiety, depression and pain were present in patients with ALS at each data collection. Approximately one-third experienced two or more of these impairments concurrently, i.e. at the same time point. Cognitive impairment could not be assessed in many patients due to their physical impairments. Disease severity was not associated with fatigue, anxiety, depression or pain.Conclusions:Patients with ALS need, throughout the course of the disease, to be regularly screened for commonly present impairments, activity limitations and participation restrictions so that person-centered interventions can be applied at the right time.

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Treatment of fatigue in amyotrophic lateral sclerosis/motor neuron disease

Abstract: It is impossible to draw firm conclusions about the effectiveness of interventions to improve fatigue for people with ALS/MND as there are few randomised studies, and the quality of available evidence is very low.

Cited by 31 publications

References 50 publications

Ataxic Severity Is Positively Correlated With Fatigue in Spinocerebellar Ataxia Type 3 Patients

Ataxic Severity Is Positively Correlated With Fatigue in Spinocerebellar Ataxia Type 3 Patients

Understanding the needs of people with ALS: a national survey of patients and caregivers

Disability and Contextual Factors in Patients with Amyotrophic Lateral Sclerosis - A Three-Year Observational Study

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