Telemedicine use high in SMA community, Cure SMA survey finds

80% of patients and caregivers in US report turning to remote care at least once

Steve Bryson, PhD avatar

by Steve Bryson, PhD |

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About 80% of the people living with spinal muscular atrophy (SMA) in the U.S. have used telemedicine at least once, with patients turning to it more frequently than their caregivers, according to a 2021 Cure SMA survey.

SMA patients also expressed being more comfortable with telemedicine, and perceive it as more effective.

Factors that predicted telemedicine use included being male, having a higher income, being under a pharmaceutical SMA treatment, and a history of mental health issues like anxiety or depression. People with more severe SMA types also were more likely to favor telemedicine that those with less severe disease.

“These results can provide insight into patient experiences with telemedicine and can inform approaches to its use by health care professionals and clinical trial sponsors,” the researchers wrote in the study “Telemedicine Use, Comfort, and Perceived Effectiveness in the Spinal Muscular Atrophy Community,” published in the journal Telemedicine and e-Health.

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Telemedicine’s use expected to continue to rise across the SMA community

Telemedicine continues to gain in popularity since the COVID-19 pandemic, and it has shown potential in providing care to people with neuromuscular diseases like SMA, whose symptoms limit mobility. It’s also more convenient for patients in remote and underserved communities, where travel to clinics can be difficult and the cost considerable.

While unlikely to fully replace clinic visits, due to the disease’s need for comprehensive physical exams and multidisciplinary care, telemedicine “has been shown in a variety of disease settings to be an effective platform for delivering care and monitoring patients,” the scientists, largely with Cure SMA, reported.

“With 48 states and the District of Columbia conducting newborn screening for SMA as of early 2023, the population of individuals who … need access to specialty care is larger and more geographically dispersed than ever,” they noted. “Given that the majority of specialists with expertise in SMA are located in major urban centers, telemedicine can play a critical role in connecting patients with care and research opportunities.”

The group’s survey explored factors affecting telemedicine use in the SMA community.

Data on its exposure to telemedicine derived from Cure SMA’s 2021 Community Update Survey (CUS), which collected information on experiences and daily challenges. A total of 463 surveys, limited to SMA patients and their caregivers, were included in the final dataset.

Compared with the overall disease community in the U.S., survey respondents were predominantly female, white, and had a higher proportion under drug treatment. They also were more highly educated, had higher household incomes, and were more likely to be insured.

Patients more likely than caregivers to consider telemedicine effective

About four-fifths, or 80%, of the respondents had used telemedicine at least once, with SMA patients reporting more frequent use than caregivers. Patients also were more comfortable with telemedicine and more likely to consider it effective: 51.8% of patients reported using it “several times,” as did 39.3% of caregivers in a weighted analysis. Insurance type — public or private — was not associated with telemedicine’s use, comfort, and perceived effectiveness.

Increased comfort levels with telemedicine for caregivers partly depended on prior use, with more use having a more substantial effect.

Patients diagnosed with SMA type 3, a less severe form of the condition, were less likely to use telemedicine than those with SMA type 1, a severe type diagnosed in infancy.

But telemedicine was considered more effective by SMA type 2 and type 3 patients that those with other disease types, which was among findings of surprise to the scientists. “It seems counterintuitive that having Type 2 and 3 SMA, which indicate greater maximum motor function, would predict greater perceived effectiveness when increased mobility predicts reduced perceived effectiveness,” they wrote.

That males are more likely to use telemedicine than females, whether patients or caregivers in stratified models, also “raises important questions about why those differences exist, and whether they are a matter of personal preference, access to technology, or other factors,” the scientists noted.

Male sex, higher incomes and education, drug treatment, mental health favor use

Overall, findings show specific factors predict telemedicine use, its perceived comfort and effectiveness: a patient’s sex, treatment status and type, education and income level, and history of anxiety or depression.

“These findings raise important considerations for use of telemedicine,” the researchers concluded. “Clinicians may consider proactively asking about how comfortable patients and caregivers feel with telemedicine … to address patient concerns,” especially for those in remote areas with care needs, and those lacking experience with remote care.

“This research represents an important first step in better understanding patient and caregiver use of and attitudes toward telemedicine,” they added, given the recent expansion in telemedicine’s use and its “potential utility” in SMA care and research.

“These combined insights may facilitate more effective utilization of telemedicine, for delivery of care that is sensitive to the disease being treated as well as to patients and caregivers themselves,” they wrote.