Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey

Table 2 Mean rating (adjusted to a scale from 1-5) of the 28 questionnaire items

		(A) Importance at time of diagnosis		(B) Actual amount received		(C) Helpfulness currently
	Item	mean	± CI	mean	± CI	mean	± CI
1	Common symptoms of IBD	4.4	0.1	1.7	0.1	3.1	0.2
2	Complications that may arise from IBD	4.1	0.1	1.5	0.1	3.6	0.1
3	What is known (or not known) about the causes of IBD	3.9	0.1	1.3	0.1	3.5	0.2
4	Medication treatments for IBD	4.5	0.1	1.7	0.1	4.1	0.1
5	Possible side effects of medications	4.4	0.1	1.3	0.1	4.1	0.1
6	Surgical treatments that may be required for IBD	3.7	0.1	1.1	0.1	3.3	0.2
7	How to manage pain related to IBD	4.4	0.1	0.7	0.1	3.9	0.1
8	How to manage symptoms other than pain of IBD	4.3	0.1	0.8	0.1	3.9	0.1
9	How to adjust medications when symptoms cause more problems	4.5	0.1	0.9	0.1	4.0	0.1
10	When to contact your doctor	4.6	0.1	1.5	0.1	3.4	0.2
11	How IBD or the medications may affect their fertility	4.2	0.1	0.4	0.1	3.6	0.2
12	How to manage time away from work or school related to IBD	4.3	0.1	0.4	0.1	3.6	0.2
13	Insurance coverage if they run out of sick days at their work place	4.5	0.1	0.3	0.1	4.0	0.1
14	Changes to diet that may be helpful when the disease is active	4.6	0.1	1.5	0.1	3.9	0.1
15	Changes to diet that may be helpful when the disease is inactive	4.5	0.1	1.2	0.1	3.9	0.1
16	What foods offer the best nutritional value	4.3	0.1	0.9	0.1	3.8	0.1
17	What nutritional deficiencies you may be at risk for	4.4	0.0	1.0	0.0	3.8	0.0
18	When to use nutritional supplements	4.1	0.1	0.8	0.1	3.5	0.2
19	Patient's children risk of developing IBD at some point in their life	3.9	0.1	0.5	0.1	3.5	0.2
20	Informing family members about IBD	3.7	0.1	0.3	0.	2.3	0.2
21	Sources of support in coping with IBD	4.3	0.1	0.6	0.1	3.5	0.2
22	Long-term prognosis/outcome of IBD	4.3	0.1	0.7	0.1	3.9	0.1
23	Risk of developing cancer	4.1	0.1	0.7	0.1	3.8	0.1
24	Alternative medicine treatments for IBD	4.1	0.1	0.5	0.1	3.8	0.1
25	How to deal psychologically with the diagnosis of IBD	4.4	0.1	0.5	0.1	3.8	0.2
26	Tools for dealing with stress affecting or resulting from the disease	4.2	0.1	0.4	0.1	3.8	0.1
27	How IBD may affect military service	3.9	0.1	0.8	0.1	1.8	0.2
28	Religious topics that may be related to IBD	2.9	0.2	0.2	0.1	1.9	0.2

A: Rating of the importance of information for a friend or family member with new onset inflammatory bowel diseases; B: Rating of actual amount of information received within 2 mo following diagnosis; C: Rating of helpfulness of information currently. IBD: Inflammatory bowel diseases.