Online patient information about abdominal aortic aneurysms analysed

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Researchers from Leeds, UK, have found that the quality and readability of online patient information specifically for abdominal aortic aneurysms (AAAs) is poor and requires significant improvement. The study, which has been published in the July issue of Journal of Vascular Surgery (JVS), reports that clinicians treating patients with AAAs should be aware of the limitations of the online “lay literature.”

Study co-author Marc A Bailey, Academic Clinical Fellow at the Leeds Vascular Institute noted that more than a decade ago, JVS reported that the quality of sites dealing with a number of vascular diseases was poor, with one-third of such sites containing information the authors concluded was misleading, unconventional or incorrect. Given the increased accessibility and exponential use of the Web, these data are now historic.

Researchers concluded that because the UK National Health Service AAA Screening Programme is being rolled out and expected to be fully implemented by March 2013, it is pertinent to reassess the online information screened individuals from the UK would have at their disposal.

Twenty-eight people participated in focus groups in Leeds, Bristol, Manchester, Aberdeen and Cardiff in conjunction with the Vascular Society of Great Britain and Ireland (VSGBI) National AAA Quality Improvement Programme (NAAAQIP). The goal was to determine patients’ experiences of and preferences for education and counseling about their AAAs in addition to their access to information technology and experience with the Internet using structured questionnaires.

Seventy-nine of them expressed a preference for face-to-face counseling about their AAAs, with only 7% favoring the use of the Internet. However, 75% of the patients had direct or indirect access to the Internet and reported competence in its use. Of these, 57% had used the Internet to research health-related queries and reported it to be a useful adjunct to face-to-face counseling.

In addition the first 50 hits from the three largest search engines by market share (Google, Yahoo! And Bing) returned for a search of “abdominal aortic aneurysm” were objectively and subjectively assessed for quality and readability, organisation type and Health on the Net Foundation status were noted. Each unique site containing AAA information was scored for quality using the University of Michigan Consumer Health Web Site Evaluation Checklist; readability was calculated using the Flesch Reading Ease (FRE) score.

Of 150 hits, 112 were relevant, with 55 unique sites for assessment and did not have duplication of material. Overall, the FRE score was 39 (range, 29-47) and equivalent to difficult text (but readable for those with an above average rather than standard reading levels) and the Michigan score was 36 and considered a “weak site” (range, 25-56). There was good inter-observer agreement (rs _ 0.83; P _ .01) that Michigan and FRE scores were poorly correlated (rs _ 0.064; P _ .6). Sites containing discussion on the merits of endovascular/open repair and the concept of an intervention threshold had the highest Michigan Scores (58.5 [50-59.75] vs. 28 [13-36.5]; P<.001). Search engine ranking, Health on the Net Foundation status, country of origin, and organisation type did not affect quality or readability.

“These patients may have had significant education before they come into contact with the health care profession and information sought from the Web which can impact treatment decisions,” said Bailey. “Patient choice has an important role in the management of AAA particularly in choosing between open and endovascular repair in anatomically and medically suitable patients; treatment location also is important now that the volume-outcome relationship in aneurysm surgery is established.”

Researchers said further work is required to enhance the quality and readability of online AAA information to patients, but ensuring the accessibility of this information to patients remains a significant challenge for the international community with a vested interest in AAAs.

Investigation of Web sites by clinicians for statements on the risk–benefit threshold for treatment and a coherent discussion on the advantages and disadvantages of EVAR can help establish higher-quality sites in the clinical setting.

“It is important that clinicians treating patients with AAA are aware of the limitations of the currently available online information that their patients may have access to and we encourage active involvement in improving quality,” added Bailey. “It is imperative that sites are accurate, accessible, current, coherent and comprehensive.”

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