{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T03:18:43Z","timestamp":1787800723264,"version":"build-2784847793"},"reference-count":35,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2012,7,9]],"date-time":"2012-07-09T00:00:00Z","timestamp":1341792000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Musculoskeletal Care"],"published-print":{"date-parts":[[2013,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objectives<\/jats:title><jats:p>To explore the informational needs of patients with anti\u2010neutrophil cytoplasmic antibody\u2010associated vasculitis (AAV).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Three focus groups and eight one\u2010to\u2010one interviews were conducted with patients with AAV. A purposeful sample of 15 patients (ten female) [disease: three Churg\u2013Strauss syndrome (CSS); nine granulomatosis with polyangiitis (GPA); one microscopic polyangiitis (MPA); two polyarteritis nodosa (PAN)] participated in the focus groups. Eight (five female) (disease: three CSS; four GPA; one MPA) participated in the one\u2010to\u2010one interviews. A semi\u2010structured interview guide was used to explore patients\u2019 experiences of informational needs. The focus groups and interviews were audio\u2010recorded and transcribed verbatim, and analysed using the framework technique.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Emergent themes were: reaction to diagnosis, need for information on disease management and access to knowledgeable practitioners. When given the initial diagnosis, all patients described themselves as being too ill to take in information and that they later found it difficult to find information. Most information received at diagnosis was in the form of verbal information given by the hospital doctor. Patients wanted positive but truthful information in the form of a booklet.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Receiving the diagnosis of a rare, potentially life\u2010threatening 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. Copyright \u00a9 2012 John Wiley &amp; Sons, Ltd.<\/jats:p><\/jats:sec>","DOI":"10.1002\/msc.1030","type":"journal-article","created":{"date-parts":[[2012,7,9]],"date-time":"2012-07-09T09:54:04Z","timestamp":1341827644000},"page":"51-59","source":"Crossref","is-referenced-by-count":23,"title":["\u2018In One Ear and Out the Other \u2013 It's a Lot to Take in\u2019: A Qualitative Study Exploring the Informational Needs of Patients with ANCA\u2010Associated Vasculitis"],"prefix":"10.1002","volume":"11","author":[{"given":"Janice","family":"Mooney","sequence":"first","affiliation":[{"name":"School of Nursing Sciences University of East Anglia  Norwich UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fiona","family":"Poland","sequence":"additional","affiliation":[{"name":"School of Allied Health Professionals University of East Anglia  Norwich UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicola","family":"Spalding","sequence":"additional","affiliation":[{"name":"School of Allied Health Professionals University of East Anglia  Norwich UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D. 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