ABSTRACT
In rheumatic diseases increasing levels of patient education are associated with improved skills and attitudes in addition to improved knowledge. AA amyloidosis is a rare but serious complication of chronic inflammatory disease. Symptoms related to amyloidosis are often non-specific and the diagnosis, often delayed, depends on invasive biopsy procedures. This chapter identifies the perceived information needs of patients with AA amyloidosis, designed a patient information leaflet, and assesses it by sending it to patients and their main carers. It demonstrates that opinion can be gathered from patients about their needs for written information to allow the preparation of a leaflet for a rare condition. The leaflet then prepared met with little criticism and much welcome by patients and carers alike, and when assessed for usefulness, understandability and presentation scored with levels of acceptability close to those for leaflets produced by a national charity with an interest in patient education.
