Research Sheds Light on the Information Needs of Patients with Vasculitis

Jodi Hall, Senior Patient Support Associate at the Vasculitis Foundation, recently presented her study, “Information Needs of Patients with Vasculitis,” to the Medical Library Association (MLA) Conference. The research is designed to illuminate the specific types of information patients with vasculitis seek.

Offered as both a poster and presentation, the research is a content analysis of 259 reference questions submitted by patients. Findings revealed that 63% of these queries fell into seven core themes: finding a doctor, disease-specific information, disease progression, relevant research, flare management, psychosocial support, and financial support.

Hall, an MLS graduate student at Emporia State University, and Fellow with the MLA Research Training Institute, analyzed the data.

Among the findings, the most common requests were for help finding a doctor, understanding the disease itself, and accessing psychosocial support—highlighting key gaps that patient organizations and healthcare providers can begin to address. Her presentation was scheduled during the kick off for Vasculitis Awareness Month, which occurs every May.

“I am very proud of this research,” said Hall. “I hope it will close some of the information gaps patients with vasculitis and their loved ones face.” 

The study also encourages clinicians to make use of existing tools such as the Vasculitis Foundation’s disease-specific brochures to help educate patients more effectively.