Table 1 Information needs categories of patients with IBD

IBD-related basic information

Generalities about the disease

10

[16, 36, 37, 40, 43, 51, 60, 69, 72, 74]

Common symptoms /Extraintestinal manifestation

21

[16, 35, 37, 39, 41,42,43, 45, 48, 51, 52, 55, 59, 60, 66, 68, 73,74,75, 77, 78]

Disease complications

13

[35, 39, 41, 48, 51, 52, 55, 63, 66, 69, 75,76,77]

Etiology

and mechanism

12

[35, 36, 41, 48, 51, 52, 55, 60, 63, 68, 69, 77]

Prognosis/ Risk of cancer

9

[16, 35, 48, 51, 52, 54, 73, 76, 77]

Tests and diagnosis

7

[16, 37, 55, 69, 72, 73, 78]

Vaccination

3

[16, 51, 78]

Treatment

Medication

33

[16,17,18, 35,36,37,38,39,40,41,42,43, 45, 48, 51, 52, 54, 55, 60, 62, 63, 65, 66, 68, 69, 71,72,73,74,75,76,77,78]

Surgery

21

[16, 36, 37, 41, 46,47,48,49,50,51,52, 56, 57, 68,69,70, 72, 73, 76,77,78]

Alternative treatments

8

[16, 17, 36, 43, 48, 51, 55, 74]

Daily life and self-management

Diet and nutrition

29

[16, 18, 35,36,37, 39,40,41, 43, 45, 48, 51, 52, 54, 55, 60, 62, 63, 65, 66, 68, 69, 71,72,73,74, 76,77,78]

Coping with IBD

(e.g., common self-care skills)

22

[16,17,18, 35, 37, 38, 42, 48, 51, 52, 54, 55, 59, 62, 63, 68, 69, 71, 72, 74, 75, 77]

Exercise

6

[35, 39, 55, 62, 73, 74]

Issues in work or learning

10

[16, 39, 48, 52, 54, 66, 73, 74, 76, 77]

Psychological aspects

11

[16, 37,38,39, 45, 51, 55, 65, 66, 74, 75]

Experience of other patients

5

[16, 18, 51, 59, 63]

Travel-related health issues

3

[53, 67, 73]

Sex and

reproductive health

15

[16, 36, 37, 39, 47, 48, 51, 52, 55, 61, 66, 72,73,74, 76]

Miscellaneous needs ^a

27

[16,17,18, 35, 37, 39, 41, 45, 48, 51, 52, 54, 55, 58,59,60, 62, 64,65,66, 68, 69, 71, 73,74,75, 77]