Ankylosing spondylitis

The information needs of people living with ankylosing spondylitis: a questionnaire survey

Nice to know that Ankylosing Spondylitis is making more news these days and that researchers are starting to take a notice of this disease. This questionnaire survey has a lot interesting information.  For example men are less likely to search out information about AS over women and that the younger generation is looking elsewhere, the internet, over the “older” generation. According to this questionnaire, Rheumatologist are the ones disseminating information more frequently but not in such a positive manner. If this questionnaire is accurate then we need to arm the docs with more information since we all know that there are a plethora of associations, blogs, support group and medical data available that give a more positive note to this disease.

You can find the original article here.

The information needs of people living with ankylosing spondylitis: a questionnaire survey

Today, health care is patient-centered 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 utilization, 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.
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.

Conclusions: There 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.

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

Credits/Source: BMC Musculoskeletal Disorders 2012, 13:243

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