Review for 10.1186/s12876-023-02817-0 (2023)

Title: The Development of a Novel, Multilingual IBD Knowledge Questionnaire for Asian
Patients with Inflammatory Bowel Disease
Version: 2 Date: 08 Mar 2023
Reviewer's report:
Disease related knowledge is an important determinant of favourable outcomes and in that
respect, assessing and improving IBD knowledge is extremely important.
This manuscript seeks to bridge a "gap" in IBD knowledge assessment tools by producing a
specific IBD Knowledge score for patients living in Malaysia.
Please see my comments below:
1.The need to develop a questionnaire: How and on what basis was it determined that existing
scores (e.g. CCKNOW) are not appropriate for the Malaysian population? Have any studies
been conducted in this area?
2. What elements of CCKNOW do the authors feel are not discriminatory and specifically for
a Malaysian cohort?
3. What was the level of experience of IBD of the gastroenterologists involved in developing
this questionnaire? How did you define an IBD expert?
4. In testing among doctors and nurses, did yo choose those working in the IBD field and with
IBD patients or was it a random selection of clinical staff?
5. You state that some elements of the CCKNOW are unsuitable from a cultural perspective for
Malaysian cohorts. Which are these?
6. In finalising the questionnaire, aside from lay people, was the questionnaire reviewed and
tested in a sample of people living with iBD? A patient-focus group?
7. You state that patients were "They were briefed prior to administering the questionnaire and
subsequently assessed for their understanding". Please explain. Is this a patient information
leaflet explaining their rights with participation and consent or could this involve information
regarding iBD that could influence outcomes?
8. Questions :"Persons with IBD have an increased risk of having colon cancer" AND "Patients
with Crohn’s disease can have narrowing of the bowel and rupture of the bowel. " need to
be considered. Should they not be worded as "can have an increased risk" because this is not
generalisable and dependent on other factors as we know. Also, narrowing and rupture in CD-
the wording seems challenging to understand because although it appears to test knowledge of
strictures, rupture is not exactly what if often seen thankfully. Did you refer to fistula and if so,
the wording needs to be considered. Indeed a complication of fulminant UC is colon perforation
too.
9. In retesting the questionnaire 2weeks later, is it possible that if the questionnaire was provided,
or even if it was not, that recall and verification could influence scores? Did you see that?
10. It will be useful to see what answers you have provided as ground truth. For example, there
are areas of contention that may need to be considered that cannot categorically be given a clear
answer. In your questionnaire:
A] Q7: exercise in iBD- how did you answer that?
B] Q9:Smoking in IBD- could they have ticked all correct answers instead so that the question
is truly discriminatory?
C] Q10: How IBD drugs work- when you say "improve you immune system" - please explain
what you believe to be the case that is being tested among patients?
D] Q16: the wording seems challenging to understand because although it appears to test
knowledge of strictures, rupture is not exactly what if often seen thankfully. Did you refer to
fistula and if so, the wording needs to be considered. Indeed a complication of fulminant UC
is colon perforation too.
11.Was concurrent validity tested to establish comparisons with CCKNOW, and reliability and
generalizability confirmed using test–retest completion, and between centre cohorts? Is there a
plan to do this?
12. Were associations between IBD knowledge and demographic and patient-specific variables
explored, as well as participant’s views on the acceptability of this questionnaire?
13. There is no discussion on knowledge of IBD patients based on your study and next steps
planned as a result. Additionally, family history of IBD, surgical history, medical treatments
and IBD hospitalisation history,  have shown an association with IBD knowledge levels in the
past. Is there a plan to study these?
14. You point out that your questionnaire may not be applicable across even Asia. What elements
in terms of strengths and discriminatory questions regarding knowledge are your strengths
and what would this questionnaire aside from knowledge not be useful across other nations?
Specifically, what cultural barriers do you feel are not tested in CCKNOW and are tested in
yours but cannot perhaps be tested in other cohorts?