VACOM: A Study on Communications in Vascular Anomalies
We are excited to announce our grant commitment to VACOM, a new two-year study to identify the disconnect K-T patients experience routinely.
K-T Support Group has pledged $30,000 to Dr. Bryan Sisk and Dr. Anna Kerr to document the status of communication for families and adults coping with conditions like K-T and CLOVES.
We already know adults need physicians when they age out of the pediatric world, but how do we prioritize other goals going forward?
This study will give us the needed information and establish benchmarks for future clinic structure.
Dear K-T community:
Vascular anomalies are a group of rare disorders that can be disfiguring, painful, and even life-threatening. In our clinical experiences, families affected by vascular anomalies have described multiple barriers to care and communication. Yet, no researchers have explored or categorized the needs or barriers experienced by these families. We are performing a study that will incorporate interviews and surveys with caregivers and adult patients with vascular anomalies. In this 2-year study, we will learn about care and communication experiences from patients' and caregivers' perspectives. We will also learn how these experiences affect quality of life and wellbeing. We will share our findings with the K-T and CLOVES communities through interactive webinars at the beginning, middle, and end of the study. We will also share our results with clinicians and researchers who care for patients with vascular anomalies. These findings will be essential to develop future interventions to improve care and communication for these families.
Join us on Saturday, June 26th, 2021 at 1:00 pm EDT to learn how your experience can make a difference in the near future. Register on the webinar info page here.
Hope to see you then!
Dr. Bryan Sisk and Dr. Anna Kerr
Page last updated June 14, 2021