Background and aims:

patients need information for shared decision making. The aims of the study were to ascertain how patients with inflammatory bowel disease (IBD) felt about the information available and the way that their doctors informed them. In addition, how patients used the internet and factors that predicted a positive information evaluation were also assessed.

Method:

a 39-item survey was designed that was distributed via the internet, principally using a Spanish Facebook site.

Results:

four hundred and twenty completed surveys were received. Patients rated the information available with a mean of 8 points (maximum of 10) and 71% felt that their doctor informed them well or very well. Various deficiencies were found such as little information available at the time of diagnosis (58%); doubts after seeing the specialist (70%); insufficient information about IBD complications, disease course and dietary aspects; and a lack of appropriate internet webpage recommendations from specialists or pharmacists. Patients ranked the internet fourth as an information source, followed by their specialist, patient associations and other patients. Independent predictive factors of feeling well informed (≥ 8) included age, OR 1.539 (CI 1.047-2.261), p = 0.028; education, OR 1.544 (CI 1.110-2.147), p = 0,010; IBD evolution time, OR 1.267 (CI 1.003-1,601), p = 0.047; and good or very good information from the specialist, OR 3.262 (CI 2.425-4.388), p < 0.001.

Conclusions:

patients generally felt that they were well informed. However, there were aspects that needed improvement, such as information for younger patients or a lower education level, the information provided at diagnosis, information about specific or insufficiently covered IBD aspects and suggestions from doctors about high quality websites.

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