Literature Review on Health Emigration in Rare Diseases—A Machine Learning Perspective
The article deals with one of the effects of health inequalities and gaps in access to
treatments for rare diseases, namely health-driven emigration. The purpose of the paper is …
treatments for rare diseases, namely health-driven emigration. The purpose of the paper is …
Burdens of disease and caregiver burden in complex vascular malformations
R Kalbfell, W Wang, S Fishman… - Pediatric Blood & …, 2023 - Wiley Online Library
Abstract Introduction Vascular malformations (VMs) are rare diseases that affect a wide age
range of patients and require complicated care and management. The strain these …
range of patients and require complicated care and management. The strain these …
Communication with parents and young adult patients affected by complex vascular malformations
Abstract Background Vascular malformations (VMs) are rare disorders that can cause pain,
coagulopathy, disfigurement, asymmetric growth, and disability. Families affected by …
coagulopathy, disfigurement, asymmetric growth, and disability. Families affected by …
Barriers and facilitators in diagnosing axial spondyloarthritis: a qualitative study
Introduction Diagnosis of axial spondyloarthritis (axSpA) is frequently delayed for years after
symptom onset. However, little is known about patient and healthcare professional (HCP) …
symptom onset. However, little is known about patient and healthcare professional (HCP) …
Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review
Rare Diseases (RDs) in adolescents are characterized by low frequency and clinical
heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as …
heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as …
Designing and validating novel communication measures for pediatric, adolescent, and young adult oncology care and research: The PedCOM measures
Background High‐quality communication in pediatric and adolescent cancer is the standard
of care. Yet, we lack pediatric‐specific communication measures. We designed self‐report …
of care. Yet, we lack pediatric‐specific communication measures. We designed self‐report …
Vascular anomalies care in the United States: a cross-sectional national survey
S Cohen-Cutler, J Blatt, S Bayliff, I Iacobas… - The Journal of …, 2023 - Elsevier
Objective To characterize the current distribution, composition, and practice patterns of
multidisciplinary vascular anomalies (VAs) teams in the US. Study design This is a cross …
multidisciplinary vascular anomalies (VAs) teams in the US. Study design This is a cross …
Mental and physical health of adult patients affected by complex vascular anomalies
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) …
health for patients with complex vascular anomalies (VAs). Methods VA patients (N= 135) …
Factors affecting the ability of patients with complex vascular anomalies to navigate the healthcare system
Abstract Background Vascular anomalies (VAs) are rare congenital disorders that can cause
pain, disfigurement, coagulopathy, asymmetric growth, and disability. Patients with complex …
pain, disfigurement, coagulopathy, asymmetric growth, and disability. Patients with complex …
Latent profiles and predictors of barriers to care in Swiss children and adolescents with rare diseases
Objective Children and adolescents with rare diseases face significant barriers when
accessing healthcare. We aimed to assess and predict these barriers and investigate …
accessing healthcare. We aimed to assess and predict these barriers and investigate …