OBJECTIVES: The purpose of the study was to explore the informational needs of patients, carers, and partners of people living with vasculitis in Australia.

METHODS: The questionnaire was developed by adaptation of the Vasculitis Specific Informational Needs Questionnaire (VINQ) and the Vasculitis Patient-Powered Research Network (VPPRN). A link to the Australian Vasculitis Patients Informational Needs Questionnaire (AVPINQ) was posted on the websites of Australian and New Zealand Vasculitis Society (ANZVASC) and LinkedIn.com. Patients responded to questions about their disease history, experience of patient education and source, and identified whether they wanted more information in any of the following areas: disease information, investigative tests, treatment options, physical support, psychological support, social support, employment support and financial support.

RESULTS: Seventy-eight questionnaires were completed and available for analysis. More than 90% of respondents (n=72) had not heard of their type of vasculitis before they received their diagnosis. 51% of respondents received information about vasculitis at the time of diagnosis. All respondents went on to source their own information following diagnosis. Despite accessing this additional information, 74.4% of respondents wanted information related to psychological state, 69.2% of respondents wanted more disease information, and 61.5% wanted to know more about their physical health. The order of preference of source of information was reported as verbal information from a doctor, written material alone, written material and a verbal conversation together, internet search, video, an educational group, verbal conversion with a nurse or clinical educator, and a 1–2-day course.

CONCLUSIONS: This study shows that Australian patients, carers and partners need information about vasculitis and the implications of living with this rare chronic condition. Patient education is an important aspect of disease management and patient-centered care. Developing specific vasculitis patient educational resources like those associated with more common chronic illnesses would benefit this patient group.