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Dario Gregori, Reply to Are Worries and Concerns Information Side Effects?, Inflammatory Bowel Diseases, Volume 21, Issue 9, 1 September 2015, Page E23, https://doi.org/10.1097/MIB.0000000000000555
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In their letter, Berroa et al raise an important point regarding the role played by information in managing patients with inflammatory bowel disease (IBD). The points raised in their comment, although we found them not strictly related to the article by Colombara et al1 to which they refer, are 2-fold:
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For what concerns impact of disease knowledge on worsening health related quality of life although there are some reports in this direction,2 the subject is still matter of debate also because of the limitations of such evidence, like small sample size in not-newly diagnosed patient populations. Instead, disease knowledge is emerging as a need stemming directly from patients, reporting a strong desire to obtain information regarding disease progression, especially extraintestinal symptoms3 and without showing any specific influence on health related quality of life.4
The way that information is provided is likely to impact the way that the same is eventually digested by patients. In agreement with Berroa et al, we believe that providing an individualized information to patients might be the best option. Nevertheless, the quantity of information available and the need of a constant updating and tailoring to match the development of patient condition might constitute a significant burden in the day-by-day management of patients with IBD. In this sense, recent studies, where novel, Internet-based techniques in delivering information to patients are used, are providing promising results, showing that e-administered information could improve health related quality of life, adherence, knowledge about the disease, and reduce health care costs in patients with IBD.5 One of the mechanisms behind these important effects might be the capability from the patient, using such instrument, to tailor the information flow to her/his specific needs and her/his capability to absorb it.
