Burdens of disease and caregiver burden in complex vascular malformations

Introduction: Vascular malformations (VMs) are rare diseases that affect a wide age range of patients and require complicated care and management. The strain these conditions put on patients and their caretakers is not well understood. This study aims to characterize those burdens in young adult patients and parents of patients with VMs to improve communication, health-related quality of life, and caregiver burden.

Methods: We performed semi-structured interviews with patients and parents of patients with VMs. Interviews were conducted via telephone or video-call software, recorded, and transcribed. The transcriptions were analyzed to identify burden themes through multiple rounds of codebook development and refinement. The final codebook was applied to all interviews.

Results: Twenty-five young adult patients and 34 parent interviews were performed and led to the identification of four primary themes of disease burden that showed up in almost every interview: burdens of the disease process, logistical and financial burdens, psychological and emotional burdens, and social burdens. Persistent uncertainty was prominent and exacerbated all other burdens as well.

Discussion: We found that patients and parents struggle with burdens in a wider breadth of life experiences than have been previously characterized in the literature. They feel stressors of isolation, struggles with their identity, and even traumatic experiences from prior medical encounters. It is critical for providers of these patients and families to be aware of the burdens that they face outside of the immediate medical context. Acknowledging and providing space to address these burdens has the potential to greatly improve therapeutic relationships.