There were no significant differences between those participants who took part in the qualitative interviews and those who did not respond. Demographic and clinical characteristics of those participants who took part in the qualitative interviews and those who declined and/or did not respond, as well as results of independent t-tests comparing demographics of interviewees and non-responders, are available from the authors on request.
Theme 1: perceived paucity of GPs’ knowledge of IBS
Sub-theme 1a: During the diagnostic phase
a) ‘IBS is a last-resort diagnosis’. The fact that an IBS diagnosis was reached by the presence of specific physical symptoms, the assessment of red flags, and, in several cases, the exclusion of organic problems through diagnostic tests was often perceived by participants as the result of a lack of understanding of the real physical cause triggering their symptoms, a ‘last-resort diagnosis’.
Interestingly, patients were not aware that these steps, followed by many GPs, were necessary to reach a correct diagnosis, according to national guidelines, as illustrated by the following quotes:
‘Because I know that the doctors can’t find anything else wrong with you, so what they put on your results is IBS. And I find that really irritating that they sort of call it that as a last resort.’
(Patient [P] 38591,TAU, female [F], diagnosed in [D] 1999)
‘You’re in hospital, you’ve got a camera shoved up your bum and then the doctor says, “no, it’s just classic IBS symptoms”, then you kind of think that’s just a term they use when they haven’t got any other diagnosis.’
(P21339, WCBT, F, D 2008)
‘I had an endoscopy to check if I had Crohn’s disease and I didn’t. So they were pretty much like “well, there’s nothing particularly wrong with you”.’
(P20071, TAU, F, D 2009)
b) Lack of informational support. Interviewees from all groups felt that GPs provided little to no informational support after giving a diagnosis of IBS, often leading to a lack of acceptance of the received diagnosis:
‘I was just desperate […] I didn’t feel that I was getting enough support from actual GPs. I didn’t want to accept that I had IBS because my GP was telling me that I had IBS, but he actually failed to explain to me what it meant and how it would affect me.’
(P10074, WCBT, F, D 2013)
‘I haven’t had a lot of feedback from my doctor about it or advice from them […] You would be given a prescription at the doctor’s and you’re given, maybe, a bit of paper that tells you what it is, but that is it, you’ve got to go off yourself and do your own research to find out about it.’
(P21049, TAU, F, D 2011)
Box 2. Summary of findings and main group differences
Theme | Sub-theme | Common findings across groups | Differences across groups |
---|
1. Perceived paucity of GPs’ knowledge | 1a. During the diagnostic phase | IBS was perceived as a ‘last-resort diagnosis’ Poor informational support | Only CBT participants talked about time constraints, preventing GPs from providing adequate information. Earlier access to CBT was suggested as a valuable support to GPs |
1b. Finding the right treatment | This stage was described as a ‘trial and error’ process lacking tailoring and patient involvement | Only CBT participants reported a shared responsibility with doctors concerning symptom management. Some CBT participants did not intend to return to their GP as they felt in control of their IBS |
1c. Long-term sufferers know more than doctors | Participants reported having more knowledge about IBS than doctors | Although TAU participants tended to report needing reassurance from doctors, CBT participants talked about receiving reassurance from their therapist or the content of the CBT programme |
2. Perceived lack of empathy and support from doctors | 2a. ‘IBS is not serious’ | Participants reported a lack of empathy and support from GPs and consultants due to the functional nature of IBS | |
2b. ‘Just get on with your life’ | Participants reported that doctors told them at some point to ‘get on with their life’ and cope with their IBS | |
| Some interviewees talked about a positive shift in doctors in recent years in terms of empathy and IBS awareness shown by doctors | |
CBT participants frequently reported how the information provided during therapy session(s) increased their understanding of IBS. Self-learning supported by the CBT programme appeared to promote an improved sense of control over symptoms (discussed in ‘Shared responsibility with doctors’ section below):
‘Every time I’ve been to the GP, he just says “oh you suffer from IBS”, but nothing explained. So reading the sessions […] has been really good because it removed that anxiety about IBS. It is completely new information that you read […] an alternative way to manage the symptoms.’
(P38910, TCBT, male [M], D 2010)
‘I found [CBT] helped me understand what’s going on, both from a physiological and psychological side of it, as well as dealing with the symptoms.’
(P25044, TCBT, F, D 2004)
Some CBT participants acknowledged that time constraints during GP consultations led to poor provision of informational support.
These interviewees suggested that offering patients earlier access to the CBT programme could actually help GPs to promote patient understanding about IBS and management options:
‘I don’t believe GPs have enough time to deal with the various issues that the study has addressed. I think that it should be an integral part of the service offered to patients with IBS.’
(P10074, WCBT, F, D 2013)
‘So everything that we worked through in the first section, I think it would be great if doctors could start sort of mentioning that. Or if there were guidance sheets on a website that you can look up. You could work through those sorts of things yourself.’
(P24547, TCBT, F, D 2005)
Sub-theme 1b: Finding the right treatment
a) ‘Trial and error process.’ Several participants reported anger or frustration when trying different unsuccessful treatments for their IBS, particularly soon after the diagnostic phase, describing this iterative phase as an exhausting ‘trial and error process’.
Frequently, this process was perceived as a result of lack of medical knowledge from their GP as opposed to a necessary transition phase to find the right fit for them. GPs did not seem to discuss the fact that there is no ‘one size fits all’ treatment:
‘I was actually expecting it to work; because it had been prescribed by the doctor I had assumed that they would know what they were prescribing me and that it should work […] I was quite livid […] I tried quite a few things, if the doctor can’t get it right — what hope have I got.’
(P20071, TAU, F, D 2009)
‘I think it’s a trial and error. From my experience of doctors, with IBS, they will prescribe you something, then that’s it […] Then you go back and you say it didn’t work, so they try something else.’
(P25119, TCBT, F, D 2014)
b) Poor tailoring and patient involvement. The absence of a tailored treatment seemed to have a detrimental effect on the active role of patients during this phase. Furthermore, participants often felt that GPs prescribed medications without sufficient explanation of how these might work:
‘If a GP doesn’t know how to deal with it and just sends me away, what am I supposed to do? It’s kind of like trying to drill down into what is for that person.’
(P45322, WCBT, F, D 2004)
‘A lot of doctors want to put you in one box and treat you for one specific thing, they don’t look at you as an individual, they say “oh, you take that medication”.’
(P45017, TAU, D 2007)
c) Shared responsibility with doctors. CBT seemed to promote a sense of shared responsibility with doctors in terms of their IBS management.
Specifically, CBT participants felt capable of coping with their IBS symptoms in a more independent way compared with individuals from the TAU group, who still relied on their doctors to look for ongoing solutions:
‘The next phase for me would be to go back to the doctor, see a different doctor to get a different take on it.’
(P29998, TAU, M, D 2014)
‘And I think the difference the CBT can make is that if we really learn to change our bad habits, it can be forever. We can control the problem always.’
(P40496, WCBT, F, D 2015)
‘You can go to the doctor, they could do lots of different things but at the end of the day, you’ve got to do it for yourself. That’s one thing that this study has actually made me do is I’ve been in control at all times. I’ve been able to take charge of my own learning.’
(P28570, WCBT, F, D 2002)
More importantly, a few participants explicitly reported that the CBT received during the trial had changed how frequently they intended to consult their GP. A sense of empowerment appeared to be the main reason underlying the patients’ intentions:
‘It’s a solution which is always in your mind and it will help cut the cost to the health service, which are too high, let’s face it. We’ve all got to do our bit to try not to go to the doctor’s so many times […] I revert to everything I’ve learnt, instead of going to the doctor.’
(P20822, TCBT, F, D 2013)
Sub-theme 1c: Long-term sufferers know more than doctors
Participants who labelled themselves ‘long-term sufferers’ usually expressed the belief that they had more knowledge about IBS symptoms and their management compared with GPs and consultants. Despite this perception, participants from the TAU group tended to report seeking reassurance from doctors, while CBT participants reported receiving reassurance when discussing their symptoms with a therapist or when reading the content of the programme:
‘I really lost total confidence with my first GP […] As a long-time sufferer with several GPs I’ve been through quite an exhaustive list of things that I can do […] often to the point where I feel I’ve known more about it than my doctors […] I’ve seen two consultants — it’s reaffirmed what I know.’
(P20774, TAU, M, D 1999)
‘And when I was saying to [therapist] about symptoms, he was sort of very reassuring.’
(P28849, WCBT, F, D 1987)
‘I think the CBT course can be quite reassuring; that’s why I’ve downloaded things.’
(P29023, WCBT, F, D 2000)
Theme 2: Perceived lack of empathy and support from doctors
Sub-themes 2a and 2b: ‘IBS is not serious’ and ‘Just get on with your life.’
Regardless of the length of the diagnosis, interviewees from all groups reported that GPs tended to embrace a dismissive and distant attitude during consultations due to the fact that IBS is a functional disorder and the poor understanding of the actual impact IBS has on patients’ quality of life:
‘I went to see my GP, they just dismissed all my symptoms and just said I just need to learn to live with it, get on with my life, even though it was like absolutely devastating, my whole life was like falling apart.’
(P40024, TAU, M, D 2013)
‘I think basically the biggest frustration was being [ignored] about your own symptoms — I mean it took a good 6 years to find a doctor that didn’t.’
(P33561, WCBT, F, D 2003)
Some long-term sufferers from all groups reported a positive shift in doctors in recent years in terms of the empathy shown during IBS consultations, as well as an increased validation of their symptoms:
‘I feel medical science is gaining awareness of it. Going back 10 years ago, I don’t think it was treated by GPs seriously at all.’
(P20774, TAU, M, D 1999)
‘My experience of GPs has been mixed. The first GP I went years ago didn’t seem to think it was that big an issue […] The most recent GP was very good and she was very sympathetic […]’
(P16045, TCBT, F, D 2003)