The role of primary care in rare disorders: A qualitative study of parents and patients managing complex vascular anomalies
Anna M. Kerr,
Christine Bereitschaft,
Bryan Sisk
Abstract:Background:
Patients with complex rare disorders often require the care of multiple specialists. Effective coordination between primary and specialty care is needed to ensure patients receive high-quality care. Previous research has documented the importance of primary care clinicians providing referrals to specialty care and the importance of specialists in helping patients reach a diagnosis. However, little is known about primary care clinicians’ roles in the ongoing care of patients with rare di… Show more
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