Improving symptom management for people with amyotrophic lateral sclerosis

Nicholson, Katharine; Murphy, Alexander J.; McDonnell, Erin; Shapiro, Jordan; Simpson, Ericka; Glass, Jonathan D.; Mitsumoto, Hiroshi; Forshew, Dallas; Miller, Robert G.; Atassi, Nazem

doi:10.1002/mus.25712

Cited by 40 publications

(29 citation statements)

References 40 publications

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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%

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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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Section: Discussionmentioning

confidence: 99%

“…Depression and cognitive changes were also frequently noted by both PALS and caregivers. Increased attention to these symptoms in research studies and in our clinics is warranted, and has been recommended in other recent work (28,34).…”

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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“…The constant impairment was fatigue, without any variation throughout the study [ 23 ]. A survey study by Nicholson et al (2018) reported that fatigue was the most prevalent and untreated symptom in ALS patients [ 57 ]. These results are in contrast with ours, mainly due to the method used.…”

Section: Discussionmentioning

confidence: 99%

Predictors of Depression in Caucasian Patients with Amyotrophic Lateral Sclerosis in Romania

et al. 2020

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Depression remains an underdiagnosed comorbidity which significantly decreases the quality of life in amyotrophic lateral sclerosis (ALS) patients. We aimed to investigate the prevalence of depression in a cohort of ALS patients with more than one year of disease evolution. A total of 50 ALS patients were evaluated with the Beck Depression Inventory II (BDI-II) and cognition, using the Mini-Cog Standardized Instrument (MCSI). The clinical disability was evaluated using the ALS Functional Rating Scale (ALSFRS). The prevalence of depression was 42.8%. A lower BDI-II score was significantly correlated with a higher education level, the spouse as a caregiver, spiritual devotion, and employment status (p < 0.05). A multiple linear regression analysis between the BDI-II score as the dependent variable and various independent variables such as spirituality, caregiver status, educational level, and occupational status revealed that only the type of caregiver (spouse or parent/child) significantly affected the BDI-II total score (p = 0.006). The functional disability significantly correlated with loss of appetite and loss of libido (p < 0.001). A high education, spiritual devotion, high ALSFRS, and the presence of the spouse as the caregiver were associated with the absence of depression.

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“…An explanation in line with findings that patients with ALS experience fatigue as use-dependent reversible muscle weakness and whole-body tiredness [ 34 ]. 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 ].…”

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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Improving symptom management for people with amyotrophic lateral sclerosis

Cited by 40 publications

References 40 publications

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

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

Predictors of Depression in Caucasian Patients with Amyotrophic Lateral Sclerosis in Romania

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

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