Effects of prolonged interruption of rehabilitation routines in amyotrophic lateral sclerosis patients

Gonçalves, Filipe; Magalhães, Bruno

doi:10.1017/s1478951521000584

Cited by 9 publications

(9 citation statements)

References 43 publications

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“…More significant could be the reduced access to outpatient physiotherapy sections (both motor and respiratory) and rehabilitation hospitalizations during the lockdown, as already hypothesized [18]: indeed, we advised these physical treatments in almost the totality of patients, but less than half were able to follow it this year.…”

Section: Discussionmentioning

confidence: 94%

Accelerated Early Progression of Amyotrophic Lateral Sclerosis over the COVID-19 Pandemic

et al. 2021

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During the COVID-19 pandemic and the related lockdowns, outpatient follow-up visits for patients with chronic neurological diseases have been suspended. Managing people affected by amyotrophic lateral sclerosis (ALS) has become highly complicated, leaving patients without the standard multidisciplinary follow-up. This study aimed to analyze the impact of the COVID-19 lockdown on ALS disease progression. We compared the clinical data and progression in the first year following diagnosis for patients who received ALS diagnosis during 2020 (G20, N = 34), comparing it with a group of diagnosed in 2018 (G18, N = 31). Both groups received a comparable multidisciplinary model of care in our Tertiary Expert ALS Centre, Novara, Italy. The monthly rate of ALSFRS-R decline during the lockdown was significantly increased in G20 compared to G18 (1.52 ± 2.69 vs. 0.76 ± 0.56; p-value: 0.005). In G20, 47% required non-invasive ventilation (vs. 32% of G18). Similarly, in G20, 35% of patients died vs. 19% of patients in G18 (p-value: 0.01). All results were corrected for gender, age, site of onset, and diagnostic delay. Several factors can be implicated in making ALS more severe, with a faster progression, such as reduced medical evaluations and the possibility of therapeutic changes, social isolation, and rehabilitation therapy suspension.

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Section: Discussionmentioning

confidence: 94%

Accelerated Early Progression of Amyotrophic Lateral Sclerosis over the COVID-19 Pandemic

et al. 2021

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“…The quality of life (QoL) of pwALS has been negatively affected by pandemic lockdowns ( 3 , 4 ), potentially due to decreased social and environmental interactions ( 5 ). Pandemic-related isolation of pwALS is not always found to be problematic, however, because having ALS already leads to isolation ( 1 ).…”

Section: Introductionmentioning

confidence: 99%

How the coronavirus pandemic affected the lives of people with ALS and their spouses in the UK from spouses’ perspectives: a qualitative study

Didcote,

Al-Chalabi,

Goldstein

2024

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Objective This study set out to investigate, using qualitative methodology, the experiences of spouses of people with Amyotrophic Lateral Sclerosis (ALS) during the coronavirus pandemic, with particular focus on spouse distress and cognitive and behavioral change in people with ALS (pwALS). Methods Qualitative semi-structured interviews of nine spouses of pwALS living in England were conducted between 11/09/2020 and 20/04/2021, focusing on spouses’ perspectives of how their lives and the lives of pwALS were affected by the pandemic and related lockdowns. Interviews were subject to thematic analysis. Results Four superordinate themes were identified from the spouses’ interviews: (i) pandemic behaviors, which encompassed accounts of cautious behavior, relaxation of cautious behavior, and other people’s attitudes to shielding the person with ALS; (ii) changes to daily life caused by the pandemic and progression of ALS; (iii) distress in spouses, which included anxiety, depression, and burden; and (iv) ALS-related behavioral impairment. Spouses also provided mixed accounts of telehealth care, pointing out its convenience but some felt that face-to-face appointments were preferable. Conclusions While many reactions to the pandemic reported by spouses of pwALS may have been similar to those of the general population or other vulnerable groups, interviews indicated the potential for the pandemic to have made more apparent certain aspects of behavioral change in pwALS with which carers may require support. Clinicians need to acknowledge spouses’ concerns about the potential limitations of remote clinical consultations, enquire about cognitive and behavioral change, and consider how input should be best provided in such limiting circumstances.

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“…Nevertheless, questions and concerns related to telemedicine (e.g., use of instruments, clinical adherence, adjustment and prescription of ventilatory support, and whether telemedicine would identify the clinical and functional progression of patients with ALS) still emerged during the COVID-19 pandemic [ 11 , 12 ]. We hypothesized that patients with ALS experience rapid and significant disease progression due to the clinical nature of the disease.…”

Section: Introductionmentioning

confidence: 99%

Assessment of the Clinical and Functional Health Status of Patients with Amyotrophic Lateral Sclerosis during the COVID-19 Pandemic in Brazil Using Telemedicine

Brito,

Fregonezi,

Pondofe

et al. 2024

Healthcare

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This study aimed to monitor the clinical and functional progression of patients with amyotrophic lateral sclerosis (ALS) and adjust ventilatory support during the COVID-19 pandemic in Brazil using telemedicine. This longitudinal case series included five evaluations from January 2019 to June 2021. The first and second assessments were performed in person and consisted of pulmonary function, respiratory muscle strength, functionality (ALS Functional Rating Scale—Revised [ALSFRS-R]) and disease staging (King’s College criteria). The use of non-invasive ventilation (NIV), ALSFRS-R, and disease staging were assessed in the third, fourth, and fifth assessments during the COVID-19 pandemic, using telemedicine. The rate of functional decline was calculated by the difference in the total score of ALSFRS-R between evaluations. A cutoff of 0.77 in the ALSFRS-R was used to characterize the speed of functional decline. Eleven patients (mean age of 51 years, eight males) were assessed. The total score of the ALSFRS-R (p < 0.01) and its motor domain (p < 0.01) reduced significantly during the pandemic. NIV prescription increased from 54.4% to 83.3%. Telemedicine helped with the clinical and functional follow-up of patients with ALS.

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Effects of prolonged interruption of rehabilitation routines in amyotrophic lateral sclerosis patients

Cited by 9 publications

References 43 publications

Accelerated Early Progression of Amyotrophic Lateral Sclerosis over the COVID-19 Pandemic

Accelerated Early Progression of Amyotrophic Lateral Sclerosis over the COVID-19 Pandemic

How the coronavirus pandemic affected the lives of people with ALS and their spouses in the UK from spouses’ perspectives: a qualitative study

Assessment of the Clinical and Functional Health Status of Patients with Amyotrophic Lateral Sclerosis during the COVID-19 Pandemic in Brazil Using Telemedicine

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