Lean Methodology to Manage Hereditary Angioedema Patients

Hereditary angioedema (HAE) is a rare genetic disorder characterized by the occurrence of recurrent and transient subcutaneous and/or submucosal edema, which is responsible for peripheral localized swelling, abdominal discomfort and/or laryngeal edema that may lead to asphyxiation and death. The clinical onset generally occurs during childhood or adolescence. The aim of this work was to analyze the entire process for managing the HAE patient and identify corrective actions to be implemented. This study proposed implementing lean thinking to enhance the care experience of HAE patients at an Italian hospital, using the A3 reporting method. This approach aims to streamline processes, improve efficiency, and ensure high-quality patient care by providing a clear, organized overview of problems and solutions. The final result was the drafting of a Diagnostic-Therapeutic-Assistance Pathway (DTAP) for HAE in Apulia Region in Italy. This DTAP solved many problems that affected the management of this rare disease, such as the lack of knowledge of the disease on the part of emergency medical personnel, the slow communication between specialized hospital centers and local health services, and the difficulty of interaction between doctor and patient. This study brings to light a problem concerning the management of the rare disease HAE especially in the hospital setting. it is desirable that other Italian hospitals also formulate a DTAP to help the care experience of these patients. The main limitation of this study is the absence of data since the hospital has not yet been accredited as a regional referral center. There are no other studies in the literature that have used the lean methodology with the A3 report to implement new DTAPs. This work may be useful for future studies that could also cover other pathologies.