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Edel Berroa, Luis Fernández-Salazar, Nathalie Rodríguez McCullough, José Antonio Garrote Adrados, Are Worries and Concerns Information Side Effects?, Inflammatory Bowel Diseases, Volume 21, Issue 9, 1 September 2015, Page E22, https://doi.org/10.1097/MIB.0000000000000539
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Extract
To the Editor
We have read the article by Colombara et al1 with a lot of interest, and we agree on the importance of patients understanding different aspects related to inflammatory bowel disease (IBD). We care about the worries and concerns of patients and relatives because they are related to quality of life.2 After analyzing the most important patient concerns regarding IBD in 60 patients with IBD and 50 relatives with a Spanish version of the Ratio Form of IBD Patient Concern3,4 that includes 25 items scored from 0 to 100, we concluded that the highest scored 5 items were “Unknown cause of the disease,” “chronic fatigue,” “adverse effects of medication,” “cancer risk,” and “risk of an ileostomy or colostomy bag.”
On January 15, 2015, the Crohn's and Ulcerative Colitis Patients Association (ACCU) in Valladolid (Spain) held a meeting. Our aim was to reduce the concerns of patients and relatives with a presentation by an IBD-specialized physician. Twenty-one patients and 19 relatives attended. On arrival, they were asked to answer a questionnaire with the 5 previously selected items drafted in the same way as in the Ratio Form of IBD Patient Concern. Then, the 5 topics were explained in a simple way using diagrams and charts. Questions from the audience were clarified, and then we asked the attendees to fill in a questionnaire with the same 5 items, but presented in a different order. Scores from both surveys are shown in Table 1. The item “unknown cause of the disease” score was the only one that decreased in the second survey. Therefore, we were unsuccessful in reducing worries and concerns in patients or relatives by giving them further information.
