Factors affecting pathways to care for children and adolescents with complex vascular malformations: parental perspectives.

ABSTRACT:

Background

Complex vascular malformations (VMs) are rare disorders that can cause pain, coagulopathy, disfigurement, asymmetric growth, and disability. Patients with complex VMs experience misdiagnosis, delayed diagnosis, delayed or inappropriate treatments, and worsened health. Given the potential consequences of delaying expert care, we must identify the factors that impede or facilitate this access to care.

Results

We performed semi-structured interviews with 24 parents (21 mothers; 3 fathers; median age = 42.5 years) of children with complex VMs and overgrowth disorders living in the US, recruited through two patient advocacy groups - CLOVES Syndrome Community, and Klippel-Trenaunay Support Group. We performed thematic analysis to assess parental perspectives on barriers

SUBMITTER: Sisk BA 

PROVIDER: S-EPMC9287854 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature