Effect of the COVID-19 pandemic on patients with inherited neuromuscular disorders

Abstract

Background The COVID-19 pandemic has brought substantial challenges for current practices in treating hereditary neuromuscular disorders (hNMDs). However, this infection has not been the only concern for these patients. Social distancing has compromised multidisciplinary assistance and physical activity, and has brought about several mental health issues. We presented a follow-up on 363 patients with hNMDs at a Brazilian tertiary center during the peak of the COVID-19 pandemic. Objective We aimed to show the frequency and severity of SARS-CoV-2 infection among hNMD patients and to demonstrate the effects of the pandemic on life habits, disease progression and multidisciplinary supportive care status. Methods Three hundred and sixty-three patients (58% male and 42% female) were followed for three months through three teleconsultations during the peak of the COVID-19 pandemic in Brazil. Results There were decreases in the numbers of patients who underwent physical, respiratory and speech therapies. For several patients, their appetite (33%) and sleep habits (25%) changed. Physical exercises and therapies were interrupted for most of the patients. They reported new onset/worsening of fatigue (17%), pain (17%), contractions (14%) and scoliosis (7%). Irritability and sleep, weight and appetite changes, and especially diminished appetite and weight loss, were more frequent in the group that reported disease worsening. There was a low COVID-19 contamination rate (0.8%), and all infected patients had a mild presentation. Conclusion The isolation by itself was protective from a COVID-19 infection perspective. However, this isolation might also trigger a complex scenario with life habit changes that are associated with an unfavorable course for the NMD.

Physical Activity in Patients with Neuromuscular Disease Three Years after COVID-19, a Longitudinal Survey: The After-Effects of the Quarantine and the Benefits of a Return to a Healthier Life-Style

“…In our previous 2020 study, we reported a reduction in PA levels and perceived mental and physical health in both NMD patients and healthy controls during the pandemic [ 28 ]. Other studies reported similar findings in patients with NMDs [ 1 , 41 ] and patients with other neurological conditions [ 42 , 43 ]. Of interest, a study conducted in children and young adults affected by intellectual/physical disabilities showed the negative effects of quarantine on PA and investigated the long-term consequences of quarantine restrictions [ 44 ].…”

The impact of COVID-19 infection, the pandemic and its associated control measures on patients with Pompe disease

“…Also, 27.7% of patients reported worsening of their disease due to the pandemic. A study conducted in 363 patients with several NMDs, including 8 patients with Pompe disease, has also shown that patients with different NMDs experience disease worsening because of the pandemic, with up to 44% (15/34 patients) of patients with limb–girdle muscular dystrophy reporting this [ 29 ]. In the study mentioned, none of the 8 included Pompe patients reported worsening of their disease because of the pandemic.…”

“…It has been shown that in patients with NMDs, including a few patients with Pompe disease, the pandemic resulted in worsening of the quality of life, worsening of their underlying disorder and in some cases in fear and anxiety [ 28 – 31 ]. The COVID-19 pandemic has also been challenging for the disease-specific treatment of NMDs such as ERT, physical therapy and respiratory therapy [ 28 , 29 , 32 – 35 ].…”