The Experiences of Older Adults with Vascular Anomalies: An Oral History

Objective: Older adults who have navigated care for vascular anomalies (VAs) their entire lives can help clinicians and researchers understand the most significant experiences for patients across multiple life stages. Their insights can also reveal gaps in care and supportive resources that can inform the development of tailored interventions across age groups. We aim to explore the experiences of older adults with rare VAs. Methods: Data were collected using in-depth oral history interviews with 9 older adults (mean age = 69.4 years; standard deviation = 4.1) with VAs recruited from advocacy organizations. The interviews were conducted over the phone or using Zoom. All participants were compensated $40. Results: In our analysis, we identified themes relating to illness experiences (eg, long diagnostic journeys, social isolation, etc.), health care experiences (eg, clinician turnover, women’s health challenges, etc.), communication experiences (eg, clinician dismissal, family communication, etc.), and coping experiences (eg, resilience, depression, etc.). We also summarized their wishes, regrets, and advice for others. Conclusion: VA patients would benefit from psychological care to help them navigate the complex psychological, emotional, and social effects of living with a VA. Patients experience complex and multilayered uncertainty that is often heightened as they approach major life events or decisions. Yet, the shortage of VA experts in adult medicine likely contributes to fragmented health care. More work is needed to improve continuity of care for patients throughout adulthood, and more research is needed to understand the experiences of VA patients during pregnancy, childbirth, aging, and even death and dying.