Navigating care for rare diseases: Caregiver and patient advice for families and clinicians managing care for vascular malformations.

Objective: Families affected by rare diseases face many challenges finding adequate care and often report poor communication with clinicians. In the current study, we explore patient and caregiver advice for families and clinicians in the context of complex vascular malformations (VMs), a condition that is frequently misunderstood and misdiagnosed.

Methods: We performed semi-structured interviews with 21 adult patients with complex VMs and 24 caregivers of children with VMs.

Pediatricians' Communication about Medical Uncertainty: Goal-Oriented Communication and Uncertainty Management.

Despite the prevalence of uncertainty in medicine, many physicians experience anxiety as a result of medical uncertainty and are reluctant to discuss uncertainty with others. When pediatricians do disclose uncertainty to parents, they are managing both the parents' and their own feelings of uncertainty. The current study applies uncertainty management theory and multiple goals theory to explore pediatricians' communication about uncertainty.