A Qualitative Study Exploring the Informational Needs of Patients with ANCA-Associated Vasculitis
Musculoskeletal Care, 07/11/2012
Mooney J et al. – Receiving the diagnosis of a rare, potentially life–threatening disease and then dealing with its complex treatment causes anxiety and fear and can impede information retention and recall. Patients want information on diagnosis and treatment but this should be tailored to individual needs, including timing that is appropriate for them. All patients wanted the opportunity to discuss their illness and its management with a knowledgeable healthcare practitioner but also wanted printed forms of information to assimilate at their own pace.