Uncertainties, defined as metacognitive awareness of ignorance, are an essential part of
medicine. Consequently, healthcare professionals (HCPs) as well as informal caregivers …

Single large‐scale mitochondrial deletion syndromes (SLSMDS) are ultra‐rare, progressive
multi‐system diseases that make children largely dependent on their caregivers for both …

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) …

Purpose Rare diseases necessitate consistent access to specialized health services. In
Korea, despite the growing socioeconomic burden, insufficient comprehensive research is …

Abstract Background Vascular anomalies (VAs) are rare congenital disorders that can cause
pain, disfigurement, coagulopathy, asymmetric growth, and disability. Patients with complex …

Objective Children and adolescents with rare diseases face significant barriers when
accessing healthcare. We aimed to assess and predict these barriers and investigate …

Abstract Background Vascular anomalies (VAs) are a spectrum of rare pediatric disorders
that require coordinated care from multiple subspecialists. Parents often struggle to …

We assessed the psychometric properties of the “providing validation” subscale of PedCOM
measures for parents of children with vascular anomalies and adult patients. A total of 139 …

Objective: The purpose of this study was to synthesize the existing qualitative literature on
the lived experience of patients with vascular malformations to identify emergent themes and …

Objectives: The goal of the current study was to gain a deeper understanding of the
significant experiences that characterize care for vascular anomalies (VAs). Materials and …