RESEARCH ARTICLE Open Access The information needs of people living with ankylosing spondylitis: a questionnaire survey

Background: Today, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with Ankylosing Spondylitis (AS). Methods: Participants in an existing AS cohort study were asked to complete a postal or online questionnaire containing closed and open-ended questions, regarding their information access and needs. Participants were stratified by age and descriptive statistics were performed using STATA 11, while thematic analysis was performed on open-ended question narratives. Qualitative data was handled in Microsoft Access and explored for emerging themes and patterns of experiences. Results: Despite 73 % of respondents having internet access, only 49 % used the internet to access information regarding AS. Even then, this was only infrequently. Only 50 % of respondents reported accessing written information about AS, which was obtained mainly in specialist clinics. Women were more likely than men to access information (63 % (women) 46 % (men)) regardless of the source, while younger patients were more likely to use online sources. The main source of non-written information was the rheumatologist. Overall, the respondents felt there was sufficient information available, but there was a perception that the tone was often too negative. Th