Background/Purpose: The aim of this research was to discover and characterize the information needs of patients who have been diagnosed with vasculitis. Vasculitis is a term used to describe a family of rare diseases which are characterized by inflammation of the blood vessels. Methods: Utilizing Dervin’s Sense-Making Theory as a theoretical framework, a content analysis of 259 reference questions submitted to the Vasculitis Foundation by people with self-reported vasculitis was performed. Inductive coding was used to identify themes in order to explore key information gaps until saturation. Within each coded term, several additional search terms were included to find and review all relevant requests for information. Results: Identified themes included; finding a doctor, disease-specific information, disease progress, relevant research, information on flares, psychosocial support, and financial support. Of the 259 reference questions submitted in the allotted time period, 63% were related to the above categories. The three most common information requests were in the code finding a doctor, disease-specific information, and psychosocial support. Conclusion: Patients with vasculitis may leave a doctor’s appointment with unanswered questions. This research study highlights the need for a focused educational effort to close the information gaps most frequently experienced by patients with vasculitis. With seven core themes identified, a more concentrated information intervention can be started, led by patient organizations with vested interest. Physicians can and should take advantage of resources that already exist which can help to give their patients the education they need, such as the Vasculitis Foundation’s disease-specific brochures.
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