PMID- 22778039
OWN - NLM
STAT- MEDLINE
DCOM- 20130822
LR  - 20220409
IS  - 1557-0681 (Electronic)
IS  - 1478-2189 (Linking)
VI  - 11
IP  - 1
DP  - 2013 Mar
TI  - 'In one ear and out the other - it's a lot to take in': a qualitative study 
      exploring the informational needs of patients with ANCA-associated vasculitis.
PG  - 51-9
LID - 10.1002/msc.1030 [doi]
AB  - OBJECTIVES: To explore the informational needs of patients with anti-neutrophil 
      cytoplasmic antibody-associated vasculitis (AAV). METHODS: Three focus groups and 
      eight one-to-one interviews were conducted with patients with AAV. A purposeful 
      sample of 15 patients (ten female) [disease: three Churg-Strauss 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-to-one 
      interviews. A semi-structured interview guide was used to explore patients' 
      experiences of informational needs. The focus groups and interviews were 
      audio-recorded and transcribed verbatim, and analysed using the framework 
      technique. RESULTS: 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. CONCLUSIONS: 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.
CI  - Copyright (c) 2012 John Wiley & Sons, Ltd.
FAU - Mooney, Janice
AU  - Mooney J
AD  - School of Nursing Sciences, University of East Anglia, Norwich, UK. 
      j.mooney@uea.ac.uk
FAU - Poland, Fiona
AU  - Poland F
FAU - Spalding, Nicola
AU  - Spalding N
FAU - Scott, D G I
AU  - Scott DG
FAU - Watts, Richard A
AU  - Watts RA
LA  - eng
GR  - 17793/Arthritis Research UK/United Kingdom
PT  - Journal Article
PT  - Research Support, Non-U.S. Gov't
DEP - 20120709
PL  - England
TA  - Musculoskeletal Care
JT  - Musculoskeletal care
JID - 101181344
SB  - IM
MH  - Adult
MH  - Aged
MH  - Aged, 80 and over
MH  - Anti-Neutrophil Cytoplasmic Antibody-Associated 
      Vasculitis/diagnosis/*psychology/therapy
MH  - Churg-Strauss Syndrome
MH  - Female
MH  - Humans
MH  - *Information Dissemination
MH  - Interviews as Topic
MH  - Microscopic Polyangiitis
MH  - Middle Aged
MH  - *Patient Education as Topic
MH  - *Physician-Patient Relations
MH  - Polyarteritis Nodosa
MH  - Vasculitis, Central Nervous System
EDAT- 2012/07/11 06:00
MHDA- 2013/08/24 06:00
CRDT- 2012/07/11 06:00
PHST- 2012/07/11 06:00 [entrez]
PHST- 2012/07/11 06:00 [pubmed]
PHST- 2013/08/24 06:00 [medline]
AID - 10.1002/msc.1030 [doi]
PST - ppublish
SO  - Musculoskeletal Care. 2013 Mar;11(1):51-9. doi: 10.1002/msc.1030. Epub 2012 Jul 
      9.