Abstract Background Complex vascular malformations (VMs) are rare disorders that can
cause pain, coagulopathy, disfigurement, asymmetric growth, and disability. Patients with …

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 …

Abstract Background Vascular malformations (VMs) are rare disorders that can cause pain,
coagulopathy, disfigurement, asymmetric growth, and disability. Families affected by …

There is a growing body of literature that recognizes the importance of shared decision-
making (SDM) in the care for children with chronic conditions and/or disabilities. Although …

Background and objectives Initially developed as immunosuppressive agents, mammalian
target of rapamycin (mTOR) inhibitors are currently used widely in the management of …

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 …

Guided by Brashers's uncertainty management theory, the purpose of this study was to
better understand the experience of family caregivers utilizing Medicaid waivers to subsidize …

Pregnancy and childbirth are uncertain experiences that become even more so when
parents receive an unexpected medical diagnosis for their child. In the present study, we …

Nurses caring for hospitalized children with long-term ventilator dependence (LTVD) assess
family management capability and teach new skills through communication with family …

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