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

Table 1 Socio-demographic characteristics of all participants, n (%)/mean ± SD

Characteristics	Patients	HCPs
n	11	8
Age, (range)	35.2 ± 13.9	45 ± 16.9
Female sex	8 (72.7)	7 (87.5)
Years of IBS diagnosis	12.3 ± 10.5
Type of IBS classification
IBS-M	4 (36.4)
IBS-U	1 (9.1)
IBS-C	2 (18.2)
IBS-D	1 (9.1)
Unknown	3 (27.3)
Education patients
Senior general secondary education or pre-university education	3 (27.3)
Secondary vocational education	1 (9.1)
University of applied sciences	4 (36.4)
University	3 (27.3)
Employment status
Incapacitated for work due to IBS	1 (9.1)
Part-time job	4 (36.4)
Full-time job	2 (18.2)
Student	4 (36.4)
Profession
Family physician		3 (37.5)
Dietitian		3 (37.5)
Gastroenterologist		1 (12.5)
Pediatrician		1 (12.5)
Work experience (years)		17 ± 15.3
Experience in IBS-care (years)		13.6 ± 12.1

IBS: Irritable bowel syndrome; IBS-M: Irritable bowel syndrome mixed subtype; IBS-U: Irritable bowel syndrome unsubtyped; IBS-C: Irritable bowel syndrome constipation subtype; IBS-D: Irritable bowel syndrome diarrhea subtype; HCP: Health care professional.

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.

Table 3 Quote related to the management process of irritable bowel syndrome

No.	Quote	Participant
10	Most people have a clear idea of what triggers their symptoms, and in some cases it’s quite extreme when they have decided on their own to eliminate gluten and lactose, which restricts their diet significantly	Female FP (34 years)
11	Well, that was basically it (red: Prescribed fiber sachets). When that didn’t work, it was more like, ‘This is what we can do, and that’s it.’ So, with my background as a dietitian, I found that a bit of an unsatisfying answer, which led me to start experimenting and researching on my own. But at that time, I didn’t get much help from my FP	Female patient and dietitian (33 years)
12	Well, I went to the doctor a few times because my intestines were often inflamed. To be honest, the doctor never really did anything specific about it. So, no, I never really received treatment, because nobody offered. I’m not even sure if there is a treatment. I was never provided with any guidance, so I’ve basically just managed it on my own since then	Female patient (24 years)
13	No, you basically have to figure it out yourself. Back then, they’d just say, ‘Well, you have this, but it’s nothing serious, figure it out on your own.’ That was 30 years ago. Now I’ve learned, for example, that eating bell peppers doesn’t sit well with me, so I try to avoid them. And if they’re in my food, I just push them to the side of my plate and pick them out	Male patient (55 years)
14	The low-FODMAP diet really did help me realize that I couldn’t tolerate certain things. But once you’re back in a more normal phase, symptoms always come back	Female patient (30 years)
15	It’s not that you’re completely put under hypnosis, but rather that you’re guided to visualize how to relax your own body. That’s the main focus, and it’s a really nice approach. But of course, everything takes time and money, and it’s not 100% effective	Pediatrician (60 years)
16	I find it hard to say what they should do differently, but I’ve been seeing doctors for years about stomach issues. They shouldn’t downplay it, and if I want a referral to a gastroenterologist, I should be able to get one	Female patient (22 years)
17	A big challenge is that people still associate hypnosis with showmen such as Rasti Rostelli, so you end up having to explain what it isn’t before explaining what it is. But overall, we’ve already made huge progress in pediatric care	Female pediatrician (60 years)
18	Sometimes I can manage to eat a little piece of apple, but I shouldn’t eat a whole apple. You know what I mean? So, I’m not sure if a distinction can be made there as well	Female patient (30 years)

FP: Family physician; FODMAP: Fermentable oligosaccharides disaccharides monosaccharides and polyols.