A consensus statement on spinal muscular atrophy management in Saudi Arabia in the context of COVID-19

Al-Ghamdi, Fouad; Alshaikh, Nahla; Bamaga, Ahmed K.; Bashiri, Fahad A.; Hundullah, Khalid; Alshehri, Ali; Al–Muhaizea, Mohammad A.; Alsaman, Abdulaziz

doi:10.17712/nsj.2020.3.20200083

Cited by 3 publications

(1 citation statement)

References 31 publications

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“…This observation generated concerns within Cure SMA regarding potential delays in the recognition of SMA symptomatology, diagnosis, and treatment initiation. During the pandemic, SMA community members had to balance concerns about COVID-19 exposure with the need to access key healthcare services for management of SMA, such as treatment administration and monitoring, physical therapy, and in-home care [ 29 – 31 ]. While telehealth visits can support continuity of care in some settings, many SMA-related services—such as diagnosis confirmation, drug administration, and physical therapy—still require in-person interaction [ 29 , 32 – 36 ].…”

Section: Introductionmentioning

confidence: 99%

Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights

Curry

Peterson²,

Belter

et al. 2023

Neurol Ther

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Objective As part of efforts to reduce diagnostic delays and enhance clinical trials, Cure SMA evaluated the effects of COVID-19 on SMA care and clinical trial conduct. Introduction Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive, potentially debilitating muscle weakness and atrophy. Uninterrupted access to early diagnosis, disease-modifying treatment, and care for SMA is vital to avoiding irreversible motor neuron death and achieving optimal patient outcomes. Methods Two surveys were conducted: a provider survey and a community survey. The Provider Impact Survey, distributed from November 24, 2020, through March 8, 2021, assessed COVID-19’s effects on referrals for evaluation of suspected SMA, cancellations and delays of SMA-related care, and clinical trials. The Community Impact Survey was fielded in three waves between April 7, 2020 and July 19, 2021, in tandem with Cure SMA COVID-19 support programs. Results A total of 48 completed provider surveys (22 from care sites, 26 from care-and-trial sites) reflected decreases in referrals for suspected SMA, increases in appointment cancellations and delays, and patient reluctance to attend in-person visits due to COVID-19. One-third of care-and-trial sites reported trial recruitment delays, and one-quarter reported pausing trial enrollment. Results of the Community Impact Survey, completed by 2047 individuals, showed similar disruptions, with 55% reporting changes or limitations in accessing essential SMA-related services. Conclusions This research evaluates the pandemic’s interruption of SMA care and research. These insights can help mitigate and increase preparedness for future disruptive events. Expanded use of virtual tools including telehealth and remote monitoring may enhance continuity and access. However, additional research is required to evaluate their effectiveness. While this research was specific to SMA, its findings may have relevance for other patient communities. Supplementary Information The online version contains supplementary material available at 10.1007/s40120-023-00516-2.

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