Surveys show how SMA care was aided, hindered by pandemic

Cure SMA study's findings should be 'call to action' for community

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A patient is shown talking with a doctor during a telehealth video call.

The COVID-19 pandemic made it more difficult  for many people with spinal muscular atrophy (SMA) to access needed healthcare, a study highlights.

At the same time, the pandemic prompted new approaches to facilitating care and running clinical trials, such as the widespread adoption of telehealth, which brings health providers and patients into contact via phone or computer calls.

Both providers and patients or caregivers reported disrupted care, appointment cancellations, and paused or delayed clinical trial enrollments in surveys conducted in 2020 and 2021 by the nonprofit group Cure SMA.

“Collectively, these data provide an important ‘call to action’ for SMA providers, care centers, clinical trial sites, patients, and families to collaborate in leveraging innovative approaches and implementing flexible strategies for managing any future healthcare system crisis,” the researchers wrote. “Delays in healthcare can have profound consequences for individuals living with serious but treatable diseases.”

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Cure SMA study into how pandemic ‘affected SMA diagnosis, care, and research’

The study, “Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights,” was published in Neurology and Therapy. The work was funded by the Cure SMA Industry Collaboration and led by scientists with the organization.

COVID-19 caused substantial disruption across the medical community. For many people with SMA, the pandemic and related measures to mitigate a risk of infection hampered essential care.

“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. 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,” the scientists wrote.

Delays in diagnosing SMA or treating the disease can have profound consequences. Cure SMA launched a study to assess the pandemic’s role in such delays.

“We sought to determine whether the COVID-19 pandemic caused delays in SMA diagnosis, care, and treatment access,” they wrote. “Understanding the causes of these delays will help clinicians and researchers better prepare to utilize remote methods to avoid future interruption of services.”

The scientists conducted a patient survey answered by more than 2,000 people in the SMA community, as well as a provider survey answered by 48 specialists caring for people with SMA.

“These combined survey results provide new perspectives on how COVID-19 has affected SMA diagnosis, care, and research,” the team wrote.

Most patients or caregivers (75%) reported no known exposure to COVID-19, but nearly half (47.4%) reported being concerned about the possibility of contracting the virus that causes COVID. More than two-thirds of respondents (68%) worried about shortages of medical supplies and issues with treatment due to the pandemic.

More than 40% of the SMA patients or caregivers reported that the pandemic caused disruptions in care, such as delayed or canceled medical appointments. The vast majority of specialists also reported disrupted care for some of their patients, and more than 80% reported that patients delayed or canceled appointments due to concerns about COVID-19.

Remote care could benefit patients during crises and in ‘normal’ times

“Appointment cancellations and delays were common … and were initiated by both providers and patients and their caregivers. Community concern about potential exposure to COVID-19 was a driving factor of appointment cancellations and delays,” the researchers wrote.

Among centers conducting clinical trials, 73.1% of respondents reported a rise in canceled or rescheduled visits by participants, largely due to infection concerns. There also were notable decreases in the numbers of patients being referred for trials during the pandemic, though centers typically put pandemic-related restrictions in place to support participation. Other frequent steps taken included switching to a greater use of telehealth in the early days of the pandemic.

Survey data suggested that the use of telehealth decreased somewhat as restrictions eased between 2020 and 2021. The researchers noted that, as the world continues to move toward pre-pandemic norms, it is important for the SMA community  be proactive about continuing to use these technologies in ways that benefit patients.

“The pandemic created an opportunity to learn if tools that enable decentralized care, such as telehealth and remote monitoring, work well for the SMA community. As it is likely that the use of some tools may become less prevalent once the pandemic subsides, it is important for the SMA community to be deliberate in evaluating and advocating for optimal care delivery models,” the researchers wrote.

“If developed properly, remote strategies have the potential not only to make SMA care and research more adaptable in times of crisis but also to ease the patient burden of care and clinical trial participation under normal conditions,” they added.