We are pleased to support the second year of Dr. Bryan Sisk’s and Dr. Anna Kerr’s research study titled “Vascular Anomalies Communication” (VACOM) with a $9408 grant. See the details below for an update. They will also be hosting an update webinar through CLOVES Syndrome Community at 1pm EST on Saturday, March 12th. Register for the webinar here.
In the first year of this study, Dr. Sisk and Dr. Kerr interviewed 20 adult patients with vascular anomalies and 24 parents of children with vascular anomalies. They are currently analyzing these interviews, and they will soon publish their first article on barriers to accessing and maintaining expert care. Next, they plan to write articles on families’ advice and recommendations, communication experiences, the role of the primary care physician, and challenges with emergency care.
In year 2 of this study, Dr. Sisk and Kerr will learn more about patient and caregiver experiences by administering a survey. This survey can be completed by adult patients of any age, as well as parents or primary caregivers of pediatric patients. Also, international participants will be able to participate in this survey. Dr. Sisk and Kerr will also explore the experiences of older adults (65 years or older) with vascular anomalies through a series of interviews and oral histories. These interviews will highlight how care for vascular anomalies has (or hasn’t) progressed, how symptoms have evolved, and how lived experiences of these older individuals have changed over time.
After finishing this study, Dr. Sisk and Dr. Kerr are excited to start building tools that will address the problems identified in this first study. There is a lot of work to do, and this study will create an essential foundation to improve care delivery and communication for families affected by vascular anomalies