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

Published online by Cambridge University Press:  04 May 2021

Filipe Gonçalves Open the ORCID record for Filipe Gonçalves [Opens in a new window]  and
Bruno Magalhães Open the ORCID record for Bruno Magalhães [Opens in a new window]
Filipe Gonçalves*
Affiliation:
APELA-Portuguese Amyotrophic Lateral Sclerosis Association, Porto, Portugal
Bruno Magalhães
Affiliation:
Santa Maria Health School, Porto, Portugal CINTESIS – Center for Health Technology and Services Research (NursID: Innovation and Development in Nursing), Porto, Portugal
*
Author for correspondence: Filipe Gonçalves, APELA, Centro Hospitalar Conde de Ferreira, Rua de Costa Cabral 1659, 4200-227 Porto, Portugal. E-mail: filipe.goncalves@apela.pt
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Abstract

Objective

Patients with amyotrophic lateral sclerosis (ALS) experienced prolonged interruption of their rehabilitation palliative care routines due to restrictive COVID-19 pandemic public health measures. This study assesses the effects of before and after the lockdown on functionality rates and quality of life (QoL) in patients with ALS.

Methods

A longitudinal observational study was conducted. Participants were assessed three times — early January (T0), before mandatory lockdown (T1), and during lockdown (T2) — using the ALS Functional Rating Scale-revised (ALSFRS-R), Fatigue Severity Scale (FSS), and the ALS-Specific Quality of Life-Short Form (ALSSQOL-SF). The paired-sample t-test and Wilcoxon signed-rank test were used.

Results

Thirty-two patients were included with a mean age of 56.9 (SD 14.2) years and mean symptoms onset of 27.1 (SD 14.3) months. ALSFRS-R mean scores decayed significantly over time when comparing T0–T1 (0.26 ± 0.38) and T1–T2 (1.36 ± 1.43) slopes (p < 0.001). Significant differences were observed between T1 and T2 for ALSSQOL-SF scores (115.31 ± 17.06 vs. 104.31 ± 20.65), especially in four specific domains, and FSS scores (34.06 ± 16.84 vs. 40.09 ± 17.63). Negative correlations between negative emotions and physical symptoms assessed by ALSSQOL-SF and FSS were found.

Significance of the results

Rehabilitation treatment routines in palliative care, such as physiotherapy and speech therapy, appear to mitigate the ALSFRS-R slope. Prolonged interruption of rehabilitation during the lockdown may have accelerated the functional decline in ALS patients’ motor skills with as measured after 2 months by the ALSFRS-R in the limb and bulbar subscores, but not respiratory subscore. Other short-term effects, increased fatigue and negative impact on QoL, were also verified.

Keywords

ALS Functional Rating ScaleAmyotrophic lateral sclerosisPhysiotherapyQuality of lifeRehabilitation in palliative careSpeech therapy
Type
Original Article
Information
Palliative & Supportive Care , Volume 20 , Issue 3 , June 2022 , pp. 369 - 374
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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