Communication with parents and young adult patients affected by complex vascular malformations

Background: Vascular malformations (VMs) are rare disorders that can cause pain, coagulopathy, disfigurement, asymmetric growth, and disability. Families affected by complex VMs experience misdiagnosis, limited trustworthy information, delayed or inappropriate treatments, and persistent uncertainty. However, more research is needed to understand the communication experiences of these families during clinical encounters. Procedure: We performed semi-structured interviews with 34 parents of children with VMs (18% men; 82% women; mean age = 41 years) and 25 young adults with VMs (8% men; 88% women; 4% nonbinary; mean age = 29) living in the United States, recruited through four patient advocacy groups. We performed thematic analysis to assess communication experiences, using a previously developed functional model of communication in pediatric oncology as an a priori framework. Results: We identified evidence of eight communication functions previously identified in pediatric oncology: building relationships, exchanging information, enabling self-management, managing uncertainty, responding to emotions, making decisions, providing validation, and supporting hope. Uncertainty was pervasive through participants’ experiences and seemed to influence the fulfillment of communication functions. Fewer participants seemed to highlight the role of clinicians in responding to emotions or supporting hope, compared to other communication functions. Conclusion: Interviews with parents and young adult patients with VMs provided evidence for eight functions of communication. While exchanging information and building relationships were described by nearly every respondent, supporting hope and responding to emotions were mentioned less frequently. Future studies should develop patient-reported communication measures to quantify the fulfillment of these functions and to identify areas of communication in need of intervention.