Significant Experiences Caring for Vascular Anomalies: A Survey of Caregivers and Adult Patients

The goal of the current study was to gain a deeper understanding of the significant experiences that characterize care for vascular anomalies (VAs). A total of 166 adult patients and 88 caregivers (N = 254) completed an anonymous online cross-sectional survey about their experiences seeking care for their (or their child’s) vascular anomaly. We used thematic analysis to analyze participants’ responses to 3 open-ended questions asking about the biggest challenges, most memorable positive experiences, and any other significant experiences. Participants reported significant healthcare experiences representing 5 primary areas: diagnosis and treatment, healthcare system and logistics, psychosocial consequences, physical consequences, and clinical relationships. The availability of clinical knowledge and information was identified as an overarching theme affecting all 5 categories. The most common negative experiences related to healthcare system and logistics (n = 100). Clinical relationships were commonly identified in both positive (n = 100) and negative (n = 86) experiences. Their responses highlighted the value of a well-organized system of care that promotes productive interactions with expert clinicians and connects patients with support organizations. Unfortunately, VA patients and caregivers often experience long diagnostic journeys, fragmented care, and nonproductive interactions with clinicians due to the pervasive lack of information about VAs. The results indicate the need for systemic changes to address these barriers to care for patients with rare diseases.