PROJECT SUMMARY/ABSTRACT
Thirty million people in the United States live with a rare disorder, and approximately half of those affected
are children. The current study focuses on children with vascular anomalies (VAs), a spectrum of rare
congenital disorders that are often misdiagnosed and mistreated. Complex VAs can result in pain, disfigurement,
coagulopathy, dysfunction, and death if left untreated. Therefore, children require the care of VA specialists, and
coordination between primary and specialty care is imperative for children with rare diseases to ensure
patients receive comprehensive, safe, and effective care. This is especially true for families living in rural
communities, given that VA specialists are clustered at urban pediatric medical centers. However, caregivers
of children with rare diseases struggle to get their children the comprehensive care they need. Our
preliminary data suggests that common barriers to care include a fragmented system of care, distance to
specialists, lack of knowledgeable pediatricians, and inadequate local resources. Coordinated primary and
specialty care is essential for children with VAs because it can help reduce the risk of emergency room
visits, hospitalizations, and readmissions. Therefore, the proposed study aims to identify facilitators and
barriers to high-quality care coordination for patients with VAs, especially those in rural areas. Little is known
about gaps in care coordination and continuity of care for patients with rare diseases or the ways that geographic
location influences care coordination. Therefore, the goal of our proposed study is to fill this important gap by
using an innovative triadic research design that involves interviews with caregiver-pediatrician-VA specialist
triads to gain a comprehensive understanding of care coordination for children with VAs. We will achieve this
goal through three aims: Aim 1: To characterize VA specialists’ perspectives on facilitators and barriers to care
coordination for patients with VAs, we will conduct semi-structured interviews with VA specialists practicing at
multidisciplinary VA centers. Aim 2: To characterize caregivers of VA patients’ perspectives on facilitators and
barriers to care coordination for patients with VAs, we will interview caregivers of children with VAs who live in
rural and non-rural areas. Aim 3: To characterize pediatricians’ perspectives on facilitators and barriers to care
coordination for patients with VAs, we will interview pediatricians who care for patients with VAs, sampling
clinicians who practice in rural and non-rural areas. We will use thematic analysis to analyze our interview
transcripts. The analysis will provide a comprehensive overview of facilitators and barriers to care coordination,
with a comparison of rural and non-rural contexts, through a synthesis of pediatricians’, specialists’, and
caregivers’ perspectives. The results will reveal modifiable factors that can be leveraged to design future
interventions to improve primary care.
