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Title: What are the informational needs of patients with ANCA-associated vasculitis? : a mixed methods study
Author: Mooney, Janice
ISNI:       0000 0004 5352 131X
Awarding Body: University of East Anglia
Current Institution: University of East Anglia
Date of Award: 2014
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Background: The ANCA-associated vasculitides (AAVs) are a group of rare, potentially life-threatening conditions which if untreated can be fatal. Little is known about the information needs of people with AAV. Objectives: To explore what it is like to be diagnosed with AAV and to find out the informational needs of this group. Study design: A mixed methods approach using focus groups and one-to-one interviews, then a questionnaire surveying the membership of Vasculitis UK (VUK) and the Vasculitis Clinical Research Consortium (VCRC). Results: Emergent themes from the first phase were: reaction to diagnosis, need for information on disease management and access to knowledgeable practitioners. There were 314 VUK, 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 information needs based on group, sex, age, disease duration, disease, or method of questionnaire delivery. Conclusion: Receiving the diagnosis of a rare, potentially life-threatening disease causes anxiety and fear and can impede information retention and recall. 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. Recommendations: 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.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available