Impact of COVID‐19 on the quality of life of patients with neuromuscular disorders in the Lombardy area, Italy

Abstract

Introduction:/Aims: Patients with neuromuscular disorders (NMDs), including many elderly, immunosuppressed, and disabled individuals, may have been particularly affected during the coronavirus disease 2019 (COVID-19) pandemic in Lombardy, a COVID-19 high-incidence area between February and May 2020. We aimed to evaluate the effects of the COVID-19 pandemic on the quality of life (QoL) and perceived disease burden of this group of patients.Methods: We conducted a cross-sectional phone-based survey study between June 1 and June 14, 2020, on a sample of 240 NMD patients followed at our clinic in Milan, Italy. We asked about perceived NMD burden and QoL before and during the COVID-19 pandemic. We collected responses on access to outpatient care and ancillary services. We investigated the presence of symptoms suggestive of COVID-19 infection and confirmed cases.Results: We collected 205 responses: 53 patients (25.9%) reported a subjective worsening of the underlying NMD. QoL measures showed a significant worsening between pre and pandemic time frames (odds ratio, 2.14 95%; confidence interval, 1.82-2.51). Outpatient visits were postponed in more than half of cases (57.1%), with 104 patients (50.7%) experiencing a cancellation of scheduled diagnostic tests. 79 patients (38.5%) reported at least one symptom attributable to COVID-19 infection. Among the 10 patients tested with nasopharyngeal swabs, 6 tested positive and 3 died from respiratory failure, including 2 patients on corticosteroid/ immunosuppressive therapy.

Effect of the COVID-19 pandemic on outpatient care and rehabilitation in neuromuscular clinical practice in Japan: a health insurance claims database analysis

“…Moreover, rehabilitation services and outpatient visits were the most affected, having been suspended in 93% of the centres. In another study by Gagliardi et al evaluating the effects of the COVID-19 pandemic on the quality of life of 205 patients with NMD in the Lombardy area of Italy, 27 the authors reported that outpatient visits were postponed in 57.1% of cases and that 50.7% of patients experienced a cancellation of scheduled diagnostic tests, suggesting that the pandemic substantially disrupted clinical and support services for patients with NMDs and reduced quality of life. Taken together, the results from these two European studies suggest that the impact of the COVID-19 pandemic on patients with NMDs was higher in Europe than in Japan; however, the reasons for the higher impact are currently unclear and must be investigated in future studies.…”

Living with facioscapulohumeral muscular dystrophy during the first two COVID-19 outbreaks: a repeated patient survey in the Netherlands

“…At the time, the study was initiated in March 2020, it was unknown what the impact of COVID-19, and the restrictions on FSHD patients would be. In Italy, research on various Neuromuscular Disorders (NMDs) has shown a subjective worsening of the NMD symptoms and a significant worsening of quality of life (QoL) during the pandemic [ 8 , 9 ]. It is expected that the worsening of disease aspects and QoL will also have occurred in FSHD patients.…”

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

“…The COVID-19 pandemic and associated control measures have had a big, though variable, impact on the general populations’ health, including their mental health [ 27 ]. 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 ].…”