COVID-19: Retrospective Analysis in Neuromuscular Disease Patient's Impact on Healthcare, Quality of Life and Anxiety

ABSTRACT

In March 2020, Belgium followed the world sanitary regulations related to covid-19, and instaured a general lockdown. To prevent health care saturation, only urgent consultations were allowed to happen face-to-face. This situation has largly impacted the activity of chronic patients care, including in the NeuroMuscular disease Reference Center (NMRC) of Liège. In order to measure the impact of lockdown on patients' health, we set up a retrospective analysis with data collected in 680 patients, adults and children followed at the NMRC Liège. We collected demographic, medical, social, quality of life and anxiety data. We found that 25.1% of neuromuscular adults patients presented with a significative change (< 5%) of weight. 22.53% of adults and 21.26% of children experienced change regarding medical support, 26.0% of adults and 25.5% of children regarding social aids support, 32.2% of adults and 32.3% of children regarding paramedical support and, fi- nally, 37.7% of adults and 46.9% of children regarding their family environement. Anxiety was reported by 36.3% and 41.8% of children and adults, respectively. Anxiety was mostly reported to be caused by loneliness and fear for relatives. Comparing in pre and post lockdown the standardized ActiVlim questionnaire that measures patient autonomy, we found that 35.4% of adults (n=147) were overall stable whilst 31.3% reported progress and 33.3% reported decline. Similar comparison in children (n= 35) demonstrated stability in 17.1%, progress in 45.7% and decline in 37.1%. A clear disease specificity was observed in Activlim data when we compare pre and post surveys. For example, children with SMA disease tended to stabilize in quality of life questionnaire and even progressed for some. This is consistent with the fact that these patients are treated with newly available disease modifying treatments. On the other hand, ALS patients tended to lose a very significant part of their autonomy during this lockdown, which is of course related to the course of the disease itself. Our study helps to better appreciate the impact of lockdown on neuromuscular patients, and could add further evidence in the benefit/risk balance of lockdown on the health of vulnerable population.