Publications by authors named "Paul Kj Han"
Background: Web-based information and social support are commonly used in rare disease communities where geographic dispersion and limited provider expertise complicate in-person support. We examined web-based resource use among caregivers of individuals with telomere biology disorders (TBDs), which are rare genetic conditions with long diagnostic odysseys and uncertain prognoses including multiorgan system cancer risk.
Objective: This study explored internet-based information-seeking and social support practices and perspectives of patients with TBDs and their caregivers.
Background: Social media has the potential to provide social support for rare disease communities; however, little is known about the use of social media for the expression of medical uncertainty, a common feature of rare diseases.
Objective: This study aims to evaluate the expression of medical uncertainty on social media in the context of dyskeratosis congenita, a rare cancer-prone inherited bone marrow failure and telomere biology disorder (TBD).
Methods: We performed a content analysis of uncertainty-related posts on Facebook and Twitter managed by Team Telomere, a patient advocacy group for this rare disease.
Objective: Few reliable and valid prognostic tools are available to help emergency physicians identify patients who might benefit from early palliative approaches. We sought to determine if responses to a modified version of the surprise question, "Would you be surprised if this patient died in the next 30 days" could predict in-hospital mortality and resource utilization for hospitalized emergency department patients.
Methods: For this observational study, emergency physicians responded to the modified surprise question with each admission over a five-month study period.