The information needs of people living with ankylosing spondylitis: a questionnaire surveyReport as inadecuate

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BMC Musculoskeletal Disorders

, 13:243

Epidemiology of musculoskeletal disorders


BackgroundToday, 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.

MethodsParticipants 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.

ResultsDespite 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. The majority 95% of people would like to receive a regular newsletter about AS, containing positive practical and local information. Suggestions were also made for more information about AS to be made available to non-specialist medical professionals and the general public.

ConclusionsThere appears to be sufficient information available for people with AS in the UK and this is mostly accessed by younger AS patients. Many patients, particularly men, choose not to access AS information and concerns were raised about its negative tone. Patients still rely on written and verbal information from their specialists. Future initiatives should focus on the delivery of more positive information, targeting younger participants in particular and increasing the awareness in the general population and wider non-specialist medical community.

KeywordsAnkylosing spondylitis Information sources Information needs Education Information usage AbbreviationsASAnkylosing spondylitis

BASDAIBath ankylosing spondylitis disease activity index, BASDAI

CIConfidence intervals

BASFIBath ankylosing spondylitis functional index

EQ-5DEuro-Qol 5 dimensions

GPGeneral practitioner

NASSNational ankylosing spondylitis society


PASPopulation-based ankylosing spondylitis cohort

RARheumatoid arthritis.

Electronic supplementary materialThe online version of this article doi:10.1186-1471-2474-13-243 contains supplementary material, which is available to authorized users.

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Author: Roxanne Cooksey - Sinead Brophy - Muhammad Jami Husain - Elizabeth Irvine - Helen Davies - Stefan Siebert


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