Navigating Telemedicine in the Neuromuscular Pediatric Population



Poster Number: 112


Jessica Chong PA-C, Caitlin Brady NP, Mi Ran Shin MD, Melissa Fleming MD, Maria Arroyo Morr MD, Andrea Carruth OT, Katherine Kundrat DPT, Mirini Kim DNP, Stephen Chavez RD, Kathleen Smart Program Coordinator, Margaret Martinez Program Coordinator, Diana Bharucha-Goebel MD


1. Children's National Medical Center, 10. Children's National Hospital

The Covid-19 pandemic has re-shifted the way in which we provide care in the pediatric neuromuscular community. Patients with neuromuscular diseases (NMDs) are more vulnerable and at higher risk for developing complications associated with viral illnesses compared to the general population. On the other hand, patients with NMDs frequently require in person evaluations, whether in establishing a diagnosis or needing follow-up testing required for health surveillance. With the implementation of social distancing practices, our MDA clinic has attempted to find alternative strategies to address patient care needs to avoid unnecessary hospital visits. This required a constant assessment of risk versus benefit for in person versus virtual evaluation on a case by case basis, with factors including but not limited to: level of immunosuppression and baseline respiratory status, as weighed against need for cardiac and pulmonary testing, insurances requiring in person evaluations for treatment approval, and need for treatment associated laboratory safety surveillance.

Telemedicine visits were predominantly used for follow-up visits rather than new diagnostic visits. When analyzing our virtual visits from March until December 2020, virtual appointments were offered to established NMD patients, with patients with Spinal Muscular Atrophy and dystrophinopathies representing the highest percentage of telemedicine utilization (33% and 23% respectively). Telemedicine has allowed care more readily available to our patients who may have difficulty accessing care due to limited mobility, distance, or transportation. An added benefit is surveying the patient’s home environment for appropriate management, and even for potential safety issues. However, we have found the need to constantly alter our strategies in how we provide care due to barriers and challenges that come with virtual visits. Telemedicine cannot replace the need for in person evaluation for cardiac surveillance, pulmonary function testing, and fitting for equipment adjustments that frequently require hands on evaluation.

The shift to telemedicine during the pandemic has allowed for continued access to care for our patients who have limited mobility or live remotely by reducing the need to travel. Telemedicine may continue to remain a lower risk and flexible option for our NMD patient population and perhaps can be woven into the MDA follow up landscape alternating with in person assessments.