title: The informational needs of patients with ANCA-associated vasculitis-development of an informational needs questionnaire.
abstract: OBJECTIVE
  The aim of the study was to compare the informational needs of patients with ANCA-associated vasculitis (AAV).
  
  
  METHODS
  We developed a Vasculitis Informational Needs Questionnaire that was distributed to members of Vasculitis UK (VUK) by mail and registrants of the Vasculitis Clinical Research Consortium (VCRC) online registry with self-reported AAV. Patients were asked to use a 5-point scale (1 = not important, 5 = extremely important) to rank aspects of information in the following domains: disease, investigations, medication, disease management and psychosocial care. The source and preferred method of educational delivery were recorded.
  
  
  RESULTS
  There were 314 VUK and 273 VCRC respondents. Respondents rated information on diagnosis, prognosis, investigations, treatment and side effects as extremely important. Information on patient support groups and psychosocial care was less important. There was no difference in the ratings of needs based on group, sex, age, disease duration, disease or method of questionnaire delivery. The most-preferred methods of providing information for both groups were by a doctor (with or without written material) or web based; educational courses and compact disc/digital video disc (CD/DVD) were the least-preferred methods.
  
  
  CONCLUSIONS
  This study demonstrates that people with AAV seek specific information concerning their disease, treatment regimes and side effects and the results of investigations. Individuals preferred to receive this information from a doctor. Patients with AAV should be treated in a similar manner to patients with other chronic illnesses in which patient education is a fundamental part of care.
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK. j.mooney@uea.ac.uk.
authors.forename: Janice
authors.initials: J
authors.lastname: Mooney
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Nicola
authors.initials: N
authors.lastname: Spalding
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Fiona
authors.initials: F
authors.lastname: Poland
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Grayson
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Renee
authors.initials: R
authors.lastname: Leduc
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Carol A
authors.initials: CA
authors.lastname: McAlear
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Rachel L
authors.initials: RL
authors.lastname: Richesson
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Denise
authors.initials: D
authors.lastname: Shereff
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Peter A
authors.initials: PA
authors.lastname: Merkel
authors.affiliation: School of Nursing Sciences, School of Allied Health Professionals, University of East Anglia, Norwich, UK, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Pediatrics Epidemiology Center, University of South Florida, Tampa, FL, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, Duke University School of Nursing, Duke University, Durham, NC, USA and Norwich Medical School, University of East Anglia, Norwich, UK.
authors.forename: Richard A
authors.initials: RA
authors.lastname: Watts
mesh_terms: D000368:Aged; D056648:Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis / Q000175:diagnosis*; D006301:Health Services Needs and Demand; D006801:Humans; D008875:Middle Aged; D011379:Prognosis; D012042:Registries; D011795:Surveys and Questionnaires
keywords: ANCA-associated vasculitis; eosinophilic granulomatosis with polyangiitis; granulomatosis with polyangiitis; informational needs questionnaire; microscopic polyangiitis; vasculitis