Survey of Adult Patients With Vascular Anomalies Reveals Acute Need of Adult Hematologists-Oncologists to Enter the Field

Abstract

Background: We have observed that adult patients with vascular anomalies often have limited access to specialists with expertise in vascular anomalies who can coordinate their care and prescribe medications, but evidence-supported statistics needed for advocacy efforts was not available. Methods: An anonymous survey was formulated for adult patients with vascular anomalies, in collaboration with patient advocacy groups. The survey included 50 questions with built-in logic and the entire project received Internal Board Review approval. Results: Two-hundred forty-nine surveys were completed and analyzed. Of the participants still receiving care from a pediatric provider, 97% had no plan for transitioning to an adult provider. Of those no longer able to receive care in a pediatric setting, 34% had abandoned searching for a physician willing to provide care and 45% had no consistent care provider for their vascular anomaly. Sixty percent were seeing providers who had no specific interest or training in VAs. Of all respondents, 35% were evaluated in the emergency room due to VA complications at least once in the past year (8% >3 times) and 28% were admitted to the hospital at least once in the past year due to the vascular anomaly (3% >3 times). Conclusion: We collected evidence-supported documentation that adults with vascular anomalies are not part of an integrated care plan. Adult trained hematology-oncologists are essential and needed to join the dermatology, surgical, and radiology interdisciplinary teams managing this cohort of patients.