A new study reports that patients with early-onset neuromuscular and neurological disorders (NMD), including spinal muscular atrophy (SMA), experienced significant changes in their lifestyle and access to healthcare during the coronavirus disease 2019 (COVID-19) pandemic.
“Measures to reduce transmission of COVID-19 have greatly affected patients with NMDs and their families,” the researchers wrote. “For most, negative psychosocial impacts have and will continue to improve, but this may depend on the incidence of further pandemic waves.“
The study, published in BMJ Open, was a mixed-methods investigation that used semistructured telephone questionnaires between September 17, 2020, and December 31, 2020.
Forty patients with NMDs including muscular dystrophies and SMA (or their parents if they were aged less than 18 years ) completed the questionnaires. In the initial stages of the pandemic, complete adherence to “shielding,” or strict quarantine and avoidance of social contact, were common. Even after some regulations were relaxed, over half continued to strictly shield themselves.
The main areas of serious concern were regarding the potential health impact of COVID-19 infection, anxiety regarding attending hospitals, perceptions of strategies to prevent SARS-CoV-2 transmission, and fears related to a potential lack of access to intensive care if needed.
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Overall, the negative emotions reported improved somewhat over time, probably due to adaptation, a better understanding of COVID-19, and the ability to resume some social activities after the relaxation of restrictions. In addition, some positive effects were reported in terms of improved family relationships and online access to clinical services, which increased the number of available activities.
However, the lack of clear guidance for “extremely vulnerable” patients regarding strategies to reduce transmission risk and the lack of access to in-person care negatively affected many participants. The research team recommends ongoing evaluations of strategies to reduce risk among patients with SMA and other NMDs, as well as up-to-date and consistent information that will support their social, emotional, and physical well-being.
Spurr L, Tan HL, Wakeman R, Chatwin M, Hughes Z, Simonds A. Psychosocial impact of the COVID-19 pandemic and shielding in adults and children with early-onset neuromuscular and neurological disorders and their families: a mixed-methods study. BMJ Open. 2022;12(3):e055430. doi:10.1136/bmjopen-2021-055430