Experience with telemedicine in neuromuscular clinic during COVID-19 pandemic

**Background:** The COVID-19 pandemic forced a rapid transition to telemedicine across medical specialties. Prior to the pandemic, telehealth adoption in neuromuscular medicine was limited due to the reliance on detailed physical examination. This study aimed to evaluate the feasibility and acceptability of telehealth for neuromuscular patients during the pandemic, including a subgroup analysis of patients with motor neuron disease (MND).

**Methods:** This was a single-center survey study conducted at UMass Chan Medical School between July 2020 and January 2022. Adult neuromuscular patients (or their legally authorized representatives) who completed a televisit were offered an online survey via REDCap. Healthcare providers (HCPs) involved in these visits also completed a parallel survey. The survey included a quantitative section (9 Likert-scale questions covering telemedicine encounter and software experience) and a qualitative section (open-ended questions about likes, dislikes, and suggested changes). Additional clinical and demographic data were collected from medical records. Multivariate logistic regression was used to identify predictors of high satisfaction and willingness to participate again.

**Key Results:** Of 84 patients offered the survey, 46 (54.76%) completed it (mean age 60.91 years, 58.70% female, 97.73% white). Eighteen patients (39.13%) had MND (16 ALS, 1 PLS, 1 PMA). Among all neuromuscular patients/caregivers, 30 (65.22%) were strongly satisfied and 15 (32.61%) were satisfied with televisits. For MND patients specifically, 10 (55.56%) were strongly satisfied and 7 (38.89%) satisfied. Regarding willingness to participate again, 24 (52.17%) of all neuromuscular patients/caregivers would strongly agree and 18 (39.13%) would agree; among MND cases, 10 (55.56%) would strongly agree and 4 (33.33%) would agree. No significant differences in mean responder ranks were found between patient/caregiver and HCP groups for communication, adequate time, equal care, or telemedicine interference questions. The most common issues addressed in televisits were medication management (73.91% overall; 55.56% in MND), ordering tests/referrals (47.83% overall; 55.56% in MND), and goals of care discussion (30.43% overall; 72.22% in MND). In the predictive stepwise logistic model, younger age was the only significant predictor of strong satisfaction (P = 0.032) and strong agreement to participate again (P = 0.007) among all neuromuscular patients. In MND patients, limb onset location was a significant predictor of strong satisfaction (P = 0.005). Open-ended responses highlighted convenience and no travel as major benefits, while limitation in physical examination was the primary dislike.

**Clinical Implications:** Telemedicine is feasible and highly satisfactory for neuromuscular patients, including those with MND, during the COVID-19 pandemic. The high rate of goals of care discussions in MND televisits (72.22%), often with family/caregivers present (83.33% of MND visits), suggests that videoconference may facilitate multidisciplinary care including palliative care discussions. Younger patients and those with limb-onset MND may derive the greatest satisfaction. Limitations include the small sample size (46 patients, 18 MND), single-center design, predominantly white population (97.73%), and lack of a control group. The inability to perform physical examination remains a key barrier, particularly for new patient visits.