Primary Care Needs for Patients with Vascular Anomalies: Improving Continuity of Care and Care Coordination in Rare Diseases

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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.