Factors affecting the ability of patients with complex vascular anomalies to navigate the healthcare system.
Bryan SiskSunny LinAnna M KerrPublished in: Orphanet journal of rare diseases (2024)
Patients with VAs struggle to navigate the healthcare system. High-quality information from clinicians and more knowledgeable primary care doctors might help patients to access needed care. Relying on patient self-advocacy is insufficient. Future efforts should focus on patient-directed and clinician-directed educational interventions. Additionally, future work should assess the structural barriers that impede healthcare access for these patients.