Treatment Burden in the Long-Term Management of Patients with Arteriovenous Malformation: A 15-Year Clinical Experience

Background: Extracranial arteriovenous malformations (AVMs) are among the most challenging type of vascular anomaly to treat. Optimal management typically requires multimodal therapy delivered by a multidisciplinary team. Because treatment options vary and multiple specialties are involved, care is often fragmented. The purpose of this study was to characterize a cohort of patients with AVM managed at a large academic medical center to illustrate the complexity of treatment and advocate for specialized care coordinators. Methods: A retrospective chart review was performed to identify all patients evaluated for extracranial AVM between 2010 and 2015. Patients were excluded if they had (1) intracranial AVM only, (2) internal organ involvement only, and (3) final diagnosis was inconsistent with AVM. Age, sex, anatomic location, consulting services, diagnostic tests, procedural interventions (embolization/sclerotherapy, laser or excision), and complications were recorded. Results: Eighty-six patient charts were reviewed, and 42 patients met final inclusion criteria. The average age at time of plastic surgery consult was 23.7 ± 15.2 years. The most common anatomic locations were the face (36%) and upper extremity (31%). Patients required on average 3.3 ± 1.9 consulting services and 4.1 ± 3.5 diagnostic tests. The most common consulting service was interventional radiology (69%), and the most common diagnostic test was MRI/MRA (2.7 per patient). Patients required an average of 6.7 ± 7.3 procedures. In total, 144 embolization/sclerotherapy procedures and 70 excisions were performed. The average duration between the first procedure and the last procedure was 9.7 ± 8.7 years. Conclusion: Patients with AVM require extensive hospital resources across multiple disciplines for many years. These patients need complex, coordinated care delivered at a specialized center. A robust vascular anomalies program should include a designated care coordinator to help patients navigate the different specialties and treatment options.