Expert opinions on informational and supportive needs and sources of obtaining information in patients with inflammatory bowel disease: a Delphi consensus study

BACKGROUND: The present study introduces informational and supportive needs and sources of obtaining information in patients with inflammatory bowel disease (IBD) through a three-round Expert Delphi Consensus Opinions method. METHODS: According to our previous scoping review, important items in the area of informational and supportive needs and sources of obtaining information were elucidated. After omitting duplicates, 56 items in informational needs, 36 items in supportive needs, and 36 items in sources of obtaining information were retrieved. Both open- and close-ended questions were designed for each category in the form of three questionnaires. The questionnaires were sent to selected experts from different specialties. Experts responded to the questions in the first round. Based on the feedback, questions were modified and sent back to the experts in the second round. This procedure was repeated up to the third round. RESULTS: In the first round, five items from informational needs, one item from supportive needs, and seven items from sources of obtaining information were identified as unimportant and omitted. Moreover, two extra items were proposed by the experts, which were added to the informational needs category. In the second round, seven, three, and seven items from informational needs, supportive needs, and sources of obtaining information were omitted due to the items being unimportant. In the third round, all the included items gained scores equal to or greater than the average and were identified as important. Kendall coordination coefficient W was calculated to be 0.344 for information needs, 0.330 for supportive needs, and 0.325 for sources of obtaining information, indicating a fair level of agreement between experts. CONCLUSIONS: Out of 128 items in the first round, the omission of 30 items and the addition of two items generated a 100-item questionnaire for three sections of informational needs, supportive needs, and sources of obtaining information with a high level of convergence between experts' viewpoints.