Development of an evidence-based patient information medium: empowering newly diagnosed patients with primary biliary...

We explored patients' experiences of receiving a diagnosis of the liver disease primary biliary cirrhosis (PBC) through qualitative interviews. Findings were used to develop a patient information DVD with expert clinicians describing PBC and patients talking about their experiences. The DVD was premièred to an audience of PBC, patients who provided positive feedback. This research identified areas leading to a positive diagnosis experience, such as knowledge, information, consistency, a positive approach, simplification and repetition. We believe that introducing such a DVD into clinical practice, following diagnosis, will make a real difference to the quality of life of newly-diagnosed PBC patients.