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, investigation

SUBMITTER: Mooney J 

PROVIDER: S-EPMC4103516 | biostudies-literature | 2014 Aug

REPOSITORIES: biostudies-literature