Telemedicine Use, Comfort, and Perceived Effectiveness in the Spinal Muscular Atrophy Community.

Area of Science:

• Neurology
• Health Services Research
• Digital Health

Background:

• Telemedicine offers potential to improve clinical care access for mobility-limited populations, including those with spinal muscular atrophy (SMA).
• Existing data on telemedicine in neuromuscular diseases, particularly SMA, is largely anecdotal, necessitating further patient-centered research.
• The increasing adoption of telemedicine, accelerated by technological advancements and the COVID-19 pandemic, underscores the need to understand patient perspectives.

Purpose of the Study:

• To investigate the exposure to, comfort with, and perceived effectiveness of telemedicine within the spinal muscular atrophy (SMA) community.
• To identify demographic, clinical, and attitudinal factors associated with telemedicine utilization and perception in SMA patients.
• To provide insights for healthcare professionals and clinical trial sponsors on optimizing telemedicine integration for SMA care.

Main Methods:

• A survey was administered by Cure SMA in 2021 to collect data on telemedicine experiences from individuals affected by SMA.
• The study included 463 SMA-affected individuals residing in the United States, with data analyzed using descriptive statistics, correlations, and ordered logit regression.
• Stratified analyses were performed to compare self-completed versus caregiver-completed survey responses, accounting for weighted and unweighted data.

Main Results:

• Approximately 80% of the 463 respondents reported prior telemedicine use.
• Predictors of increased telemedicine use included male gender, higher income, prior SMA drug treatment, history of mental illness, and positive attitudes towards telemedicine.
• Significant predictors for comfort and perceived effectiveness were also identified, with differences noted between self- and caregiver-completed surveys.

Conclusions:

• Patient experiences and perceptions of telemedicine in the SMA community are influenced by various factors.
• Findings offer valuable insights for healthcare providers and clinical trial sponsors to enhance telemedicine strategies for SMA patients.
• Understanding patient perspectives is crucial for leveraging telemedicine to expand access to care and improve outcomes in SMA.