Mental and physical health of adult patients affected by complex vascular anomalies

Abstract

Objective: We examined care and communication factors that affect physical and mental health for patients with complex vascular anomalies (VAs).

Methods: VA patients (N = 135) completed an online survey with measures of ability to navigate healthcare, quality of information exchange, perceived stigma, and demographic variables. We performed linear regression to determine if these variables were associated with mental and physical health.

Results: Physical and mental health were associated with information exchange (β = .41, 95% CI=.12 -.69; β = .33, 95% CI=.04 -.62), stigma (β = -.49, 95% CI=-.74 to -.24; β = -.63, 95% CI=-.89 to -.38), and education (β = 4.00, 95% CI=.63 - 7.38; β = 3.44, 95% CI=.06 to 6.82). Ability to navigate healthcare was associated with health outcomes in our bivariate model, but not significant in a multivariate model.

Conclusion: The results underscore the importance of effective information exchange. Poor information exchange was associated with worse physical and mental health. VA patients with lower education levels and higher perceived stigma reported poorer health outcomes and likely face many struggles accessing care.

Practice implications: Patient-centered information exchange between clinicians and patients is needed to address unmet information needs. Clinicians can also reduce perceived stigma by validating patients, and should provide resources to reduce disparities related to education.

Keywords: Care coordination; Mental health; Patient-centered communication; Physical health; Rare disorders; Vascular anomalies.