Background: Patients with vascular anomalies (VAs) experience poor communication and have unmet information needs. Online patient portals could mitigate communication barriers and support communication interventions. However, these portals are often underutilized. Procedure: We retrospectively queried audit-log data from the Electronic Health Record (EHR) of a single large academic healthcare center for all patients seen by clinicians from a multidisciplinary specialist clinic with a diagnosed VA from 1/2020 to 1/2024. We connected audit-log data with patient demographics to examine how patients used the portal, and whether use varied by patient characteristics. Results: We queried portal usage for 315 patients with vascular anomalies, of whom 43% were children, 19% were adolescents, and 38% were adults. Approximately half of patients’ portals were logged into during the study period (51%, n=162). Of users who ever logged into the portal, the median number of logins per year were 35 (interquartile range 15 to 95). Multiple regression results show that portal access was higher for patients who are White, reside in a metropolitan area, and have lower Area Deprivation Index. Of users who ever logged into the portal, 77% viewed clinician notes, 90% viewed test results, and 71% engaged in messaging with a clinician at least once. Conclusion: Half of patients and caregivers never use the portal, and patients from less urban areas with higher deprivation are even less likely to use the portal. As portals become more integrated into patient care, these inequities in portal access could lead to inequities in health outcomes.

Background and Objectives: Initially developed as immunosuppressive agents, mTOR inhibitors are currently used widely in the management of vascular malformations and tumors. The incidence of infectious complications in the vascular anomalies (VA) population is not well defined. The goal of this systematic review was to better define the types and severity of reported infectious complications in patients with VAs treated with mTOR inhibition. Methods: This was a systematic review conducted following PRISMA guidelines evaluating all research articles focused on infectious complications in patients with VAs treated with sirolimus or everolimus. Thirty articles including 1181 total patients and 315 infections (in 290 unique patients) were ultimately included. Results: The majority of infections were viral upper respiratory (n=137, 54%), followed by pneumonia (n=52, 20%), and cutaneous infections (n=20, 8%). There were 6 total infection-related fatalities, which all occurred in patients younger than 2 years. Only 1 case of Pneumocystis jirovecii pneumonia (PJP) was reported. This was in an infant with KHE who was also treated with steroids and did not receive PJP prophylaxis. Almost 1/3 (n=95, 32%) of infectious complications were graded 3 to 4 according to CTCAE criteria. Details of patient age, subtype of VA, and timing of infection were lacking from many reports. Conclusions: Most infectious complications reported in patients with VA on mTOR inhibitors were viral respiratory infections and non-severe. Bacteremia, infectious fatalities, and PJP are exceedingly rare. Future studies are needed to clarify the spectrum of infectious risks in VA patients and to provide guidance for infection prevention.