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.

An investigation of vascular anomalies centers' transition of care practices

“…4,5 One study of 249 adults with VAs found that of the participants still receiving pediatric care, 97% had no plan for transfer to an adult provider. 1 Of those no longer in a pediatric setting, 34% were unable to find a physician. Forty-five percent had no consistent care provider, and 60% were seeing providers without specific training in the management of VAs.…”

“…Forty-five percent had no consistent care provider, and 60% were seeing providers without specific training in the management of VAs. 1 Without formalized TOC programs, there may be fewer opportunities for interdisciplinary coordination among adolescent and adult specialists, resulting in a failure to provide comparable care to adult patients with VAs. Our results demonstrate the lack of TOC programs and variable patient care trajectories for patients with VAs as they mature, despite the existence of well-established VACs within academic medical centers.…”

“…Despite consensus among physicians that well‐executed TOC is of great importance for patients with complex conditions, 2,3 there is a paucity of information regarding TOC models for complex VAs 4,5 . One study of 249 adults with VAs found that of the participants still receiving pediatric care, 97% had no plan for transfer to an adult provider 1 . Of those no longer in a pediatric setting, 34% were unable to find a physician.…”

“…Multiple specialists are needed to provide medical and procedural therapies across a broad range of ages. Many pediatric medical centers have established multispecialty vascular anomaly centers (VACs) to manage patients with complex VAs 1 . However, the number of centers that provide lifelong interdisciplinary care into adulthood has not been studied.…”

“…Many pediatric medical centers have established multispecialty vascular anomaly centers (VACs) to manage patients with complex VAs. 1 However, the number of centers that provide lifelong interdisciplinary care into adulthood has not been studied. TOC support for adolescent and adult patients with VAs is of great importance; comorbidities of VAs as well as adverse effects of medical therapies, evolve from childhood to adulthood and agespecific expertise is necessary.…”