Understanding irritable bowel syndrome care: Co-create with patients and providers for diagnostic and management innovations

Table 2 The quotes related to the diagnostic process of irritable bowel syndrome

No.	Quote	Participant
1	I noticed that when I was stressed, I had stomach pain and when I was not stressed, I still had stomach pain… But I find it hard to figure out. One time I can eat fries and feel fine because I go for a walk afterward, but another time I eat fries and then lie on the couch, and my body doesn’t handle it well. Things like that make a difference	Female patient (30 years)
2	At the end of 2017, I started having a lot of bowel problems and stomach pain again, so I went to the doctor. They did blood tests to check for a gluten allergy, but everything looked normal, so she said, ‘You have irritable bowel syndrome’	Female patient (30 years)
3	Patients often come with long-standing abdominal pain and want something done. They don’t immediately accept it when I say, ‘You meet the criteria for IBS.’ I ask, ‘What are you hoping for from me? Of course, I’ll examine your abdomen, but what did you have in mind?’ And they almost always ask for at least a blood test	Female FP (34 years)
4	I think people feel more heard when you take their symptoms seriously. But first, you need to do thorough testing, otherwise they feel like it’s just being brushed off as IBS. That’s where the challenge lies	Female FP (30 years)
5	Quite often, people mention they frequently experience a bloated stomach, or excessive bathroom usage, but there is no corresponding diagnosis recorded but I do see a long list of episodes - diarrhea, abdominal complaints, constipation - and yet the possibility of IBS has never been discussed with them. When I notice these patterns, I try to bring it up	Female FP (30 years)
6	For me, it (red: Diagnostic process) was a bit vague. I just thought I had IBS, and then the doctor said, ‘Yes, you’re familiar with the term.’ But it was never really explained to me. Then I was just referred to a website with things to try, and I thought, ‘I don’t know.’ I’ve just had poor experiences with FPs, so I’m a bit skeptical and don’t take it very seriously	Female patient (22 years)
7	I really wish there was a way to get more specific advice based on tests, like stool, blood, or breath analysis, so I would know what to try, like which probiotics or foods to avoid without having to experiment with all sorts of diets. That would be really helpful, because sometimes I still don’t know why I feel the way I do	Female patient (30 years)
8	Accepting the diagnosis - and acknowledging that it is not always as straightforward - is a fundamental prerequisite for starting the treatment process	Female FP (34 years)
9	A device like that would have been amazing. I wouldn’t have had to go through those unnecessary endoscopies, and I could have known my diagnosis with more certainty. I’m almost sure I have IBS, but I still don’t have an official diagnosis	Male patient (50 years)

IBS: Irritable bowel syndrome; FP: Family physician.