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

<p>Abstract</p> <p>Background</p> <p>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...

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Main Authors: Cooksey Roxanne, Brophy Sinead, Husain Muhammad Jami, Irvine Elizabeth, Davies Helen, Siebert Stefan
Format: Article
Language:English
Published: BMC 2012-12-01
Series:BMC Musculoskeletal Disorders
Subjects:
Online Access:http://www.biomedcentral.com/1471-2474/13/243
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author Cooksey Roxanne
Brophy Sinead
Husain Muhammad Jami
Irvine Elizabeth
Davies Helen
Siebert Stefan
author_facet Cooksey Roxanne
Brophy Sinead
Husain Muhammad Jami
Irvine Elizabeth
Davies Helen
Siebert Stefan
author_sort Cooksey Roxanne
collection DOAJ
description <p>Abstract</p> <p>Background</p> <p>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).</p> <p>Methods</p> <p>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.</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>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.</p>
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spelling doaj.art-b44d09747a0046f7b497e66217cf40d62022-12-21T22:02:09ZengBMCBMC Musculoskeletal Disorders1471-24742012-12-0113124310.1186/1471-2474-13-243The information needs of people living with ankylosing spondylitis: a questionnaire surveyCooksey RoxanneBrophy SineadHusain Muhammad JamiIrvine ElizabethDavies HelenSiebert Stefan<p>Abstract</p> <p>Background</p> <p>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).</p> <p>Methods</p> <p>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.</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>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.</p>http://www.biomedcentral.com/1471-2474/13/243Ankylosing spondylitisInformation sourcesInformation needsEducationInformation usage
spellingShingle Cooksey Roxanne
Brophy Sinead
Husain Muhammad Jami
Irvine Elizabeth
Davies Helen
Siebert Stefan
The information needs of people living with ankylosing spondylitis: a questionnaire survey
BMC Musculoskeletal Disorders
Ankylosing spondylitis
Information sources
Information needs
Education
Information usage
title The information needs of people living with ankylosing spondylitis: a questionnaire survey
title_full The information needs of people living with ankylosing spondylitis: a questionnaire survey
title_fullStr The information needs of people living with ankylosing spondylitis: a questionnaire survey
title_full_unstemmed The information needs of people living with ankylosing spondylitis: a questionnaire survey
title_short The information needs of people living with ankylosing spondylitis: a questionnaire survey
title_sort information needs of people living with ankylosing spondylitis a questionnaire survey
topic Ankylosing spondylitis
Information sources
Information needs
Education
Information usage
url http://www.biomedcentral.com/1471-2474/13/243
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