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

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.