Abstract Details

We developed a patient and physician weighted consensus unit, akin to currency (US Dollar), called the AEU, based on the strengths of the Common Terminology Criteria of Adverse Events (CTCAE) version 4.^{1, 2} Unlike previous measures, the AEU quantifies AE burden, independent of any disease or treatment, to facilitate comparisons among different medications over time. Collection of MG disease specific outcome metrics is standard practice in many MG clinics to provide a more precise understanding of MG patient status. ^3-5  However, current MG metrics do not quantify treatment AE burden. We anticipate that AEU scores will provide novel information to better inform individual patient treatment decisions and treatment paradigms for MG populations.

To evaluate the feasibility and utility of administering the Adverse Event Unit (AEU) as a measure treatment adverse event (AE) burden in a myasthenia gravis (MG) clinic.

The MG-ADL, MG-QOL15r, and MG-Composite are routinely administered to patients at University of Vermont (UVM) Myasthenia Gravis Clinic visits. In this study, AEU scores are also being obtained from MG patients seen in person and by telemedicine at UVM. AEU administration will be considered feasible if completion rate is equal to or better than MG-ADL completion rate during a 6 month period.^{6, 7} Participating physicians and patients are also being surveyed about satisfaction with and utility of the AEU. We are also comparing the time to administer the AEU and other MG metrics, and evaluating if AEU scores are associated with decisions to change treatment.

Prospective analysis of the AEU at the UVM Neuromuscular Clinic is ongoing.

This study will present data about the feasibility and utility of administering the AEU with MG patients during routine clinical visits to a MG subspecialty clinic. Final study results will be presented.