To compare the importance of issues of concern ranked by physicians and children with inflammatory bowel disease (IBD).
An item list consisting of 96 items-of-concern, identified by individual interviews and focus group sessions with 81 children with IBD, was administered to a second group of children with IBD (n = 117) asking them to rate the importance of each item to their lives on a 7-point scale. Twenty-one pediatric gastroenterologists experienced with treating children with IBD were asked to mark on the same questionnaire how important they thought each item was to their patients.
Of the top 10 most important items identified by children with IBD only two were ranked in the top 10 by physicians. Most striking was the item: "having to take medication," which was scored number 3 by the children and did not appear in the top 50 of physicians. Physicians significantly overestimated the importance of four IBD symptoms (bothered by diarrhea, embarrassed by bad odor, worried about having accident in pants, and worries about passing gas) whereas they underestimated the importance of three other items (bothered by having to take medicines, worries about future health problems, and worries about weight).
Physicians' views of what issues and concerns are most important to children with IBD differ from those stated by the children themselves. Physicians overestimate the importance of physical symptoms. Children should be included in the development phase of instruments assessing health perceptions.