Abstract
AIMS: To evaluate the benefits of telemedicine in children with tuberous sclerosis complex during the COVID-19 pandemic. METHODS: A retrospective cohort study was conducted, comparing telemedicine and in-person visits within the timeframe spanning from June 1, 2021, to June 1, 2022. Disparities in demographics, emergency visits, hospitalizations, adverse effects (AEs) associated with sirolimus, and the incidence of drug-refractory epilepsy (DRE) between telehealth and in-person care were assessed. Additionally, distinctions between audio and video telehealth, as well as varying frequencies of telehealth encounters, were investigated and reported as odds ratios (ORs). RESULTS: A total of 378 patients with 1206 visits were included, of which 137 were telemedicine patients and 241 were in-person patients. The median age was 5.0 years (IQR 2.8-10.0 years). There were 197 males (52.12%), 691 in-person visits (57.30%), and 515 telemedicine visits (42.70%). Children under 12 years old, those farther away from the center, mothers with more than 12 years of education, and children treated with sirolimus were more likely to visit via telemedicine. Telehealth was associated with significantly fewer emergency visits, hospitalizations, AEs of sirolimus, and DRE. With 10 or more visits, the incidence of emergency visits, hospitalization, and DRE was significantly reduced. CONCLUSION: Telemedicine visits are almost as close in number as in-person visits. Younger patients, patients in remote areas, and mothers with higher education levels are more willing to complete telemedicine visits. Telemedicine visits were associated with a significantly lower number of emergency visits, hospitalizations, and AEs of sirolimus. Patients with more than 10 visits per year seemed to have better clinical outcomes.