Background
Irritable bowel syndrome (IBS) is the commonest of the functional gastrointestinal disorders [
1], with an estimated prevalence of 10% [
2]. It is a chronic, relapsing and often life-long disorder, characterized by the presence of abdominal pain/discomfort associated with defaecation, a change in bowel habit, the sensation of abdominal distension, and may include associated non-colonic symptoms. As with other ‘medically unexplained symptoms’ (MUS) people with persistent symptoms of IBS have poor physical function, impaired quality of life and high healthcare costs [
3]. There is evidence of impairment of health-related quality of life (QOL) [
4,
5] and qualitative studies have highlighted how symptoms impact on daily functioning, personal and social relationships, self-image and psychological well-being [
6,
7]. The main predictors for chronicity are psychological distress, symptom duration and disruption of social activities [
8]. Factors associated with persistent symptoms are number and severity of symptoms at baseline [
9,
10].
The majority of patients with IBS are managed within primary care [
11] and of those who consult their GP, it has been estimated that up to a third will go on to develop chronic symptoms [
8]. The NICE (National Institute for Health and Care Excellence) guideline (CG61 2008) [
12] emphasizes establishing a positive diagnosis, identifying symptoms that require prompt referral, but avoiding unnecessary investigations and referrals and working in partnership with the person with IBS. The guideline outlines the evidence for the effectiveness of psychotherapy, cognitive behavioural therapy (CBT) and hypnotherapy in those patients whose symptoms do not respond to pharmacological treatments after 12 months; and emphasizes that the partnership between patient and GP is key, using shared decision-making to aid symptom control [
12].
Patients with IBS disproportionately use primary and secondary care services, with sufferers consulting GPs more frequently than matched controls [
4,
13]. There is evidence of dissatisfaction and frustration voiced by patients and doctors alike. This arises from uncertainties in aetiology and the contested nature of the diagnosis [
14], ineffective treatments and a mismatch between GP and patient explanatory models [
7,
15]. In turn, this can lead to negative stereotyping of patients with IBS by doctors [
7,
14] and for patients, it may lead to a breakdown in trust and disengagement from services [
6,
16].
Bijkerk et al. (2003) report that patients and GPs share similar views on aetiology and symptomology, but differ in treatment approaches found acceptable [
17]. Dixon-Woods and Critchley (2000) report that GPs can hold hostile views about patients with IBS who are frequent attenders and do not improve [
14]. There is little previous work on how a diagnosis of IBS is made in primary care and how this label is applied. Yale et al. (2008) reported that only a small proportion of IBS cases, as recorded in medical records, met case definition criteria, suggesting that diagnosis in primary care may be problematic [
18].
This qualitative study was nested in an NIHR (National Institute for Health Research) programme of work (RP-PG-0407-10136) in which one aim was to validate prospectively a risk assessment tool which was developed following an investigation of the predictors of persistent gastrointestinal symptoms amongst new presenters to primary care [
8]. The aim of the tool is to identify which patients presenting with a new episode of IBS will go on to develop persistent symptoms, and may therefore potentially benefit from referral for more intensive management, including psychological therapies. The participating practices were not expected to use the tool, but recruit patients to the study.
The aim of the study presented here was to explore qualitatively how GPs currently diagnose and manage IBS, whether management described is consistent with the NICE guideline [
12], and GP attitudes towards a predictive, risk assessment tool to aid management and referral decisions in primary care.
Results
Nineteen interviews with GPs were conducted (see Table
1); 17 GPs had agreed that their practice would recruit patients for the larger programme, two GPs had agreed to be interviewed but their practices declined to recruit patients for the main study. The following themes are presented: an accepted illness, categorizing the patient, diagnosing and labeling, approaches to management, and the utility of a predictive tool in decision-making. Data are presented verbatim from transcripts and identified by a code attributed to the respondent.
Table 1
Details of GPs interviewed
Gender | Male | 11 | |
| Female | 8 | |
Age group | 30-39 | 7 | |
| 40-49 | 5 | |
| 50+ | 7 | |
Ethnic origin | White | 13 | |
| Asian/ Asian British | 5 | |
| Black/ Black British | 1 | |
Status | Principal | 17 | |
| Salaried | 2 | |
Mean (range) years in practice | | 15.4 | (4 to 28) |
Type of practice | Inner City | 2 | |
| Urban | 9 | |
| Suburban | 8 | |
An accepted illness
All GPs recognized the existence of IBS and suggested that the diagnosis is not contentious:
‘I do think it exists, I really do. I think people's lives can be made - it's a label isn't? People who have got constipation predominant IBS might - you could just call them constipated. It's a real condition, people get a lot of pain from it. There are people that seem to get more anxious about it. But we all get a dodgy tummy if you've got an exam or something like that. So I definitely think it exists.’ GP11
All GPs described IBS, however, as a complex condition with a biopsychosocial aetiology, with patients presenting symptoms related to ‘stress’ and lifestyle which could be difficult to untangle:
‘I think there's a lot of psychology with irritable bowel, not that necessarily the psychology causes the irritable bowel but I think for a fairly benign condition it can cause a lot more upset than you'd expect.’ GP9
GPs suggested that most patients are ready to accept the link between psychosocial issues and bowel symptoms, and may even have considered this before consulting:
‘Whereas if I involve them throughout the process right from the beginning, er, they adhere to it. I haven't had a single problem with bringing up psychological issues with any of my patients, yeah.’ GP13
Some GPs alluded to their own experiences, which made symptoms in patients more real, understandable and perhaps a more acceptable diagnosis to make:
‘I think I’ve dealt with it so much, I’ve experienced it as well and so I think when you’ve experienced it you know how severe some of the symptoms can be.’ GP11
Categorizing the patient
Most GPs recognised the chronicity of IBS and some suggested that there were a minority of patients who did not improve, attended frequently and were difficult to manage:
‘I suspect to patients it's a complete nightmare cos it's the daily thing of living with it, but in general, I have to say my experience is that we can help patients but, you know, to improve their quality of life enormously is not necessarily that easy with irritable bowel.’ GP9
Only a minority of GPs felt there was little they could offer to patients with IBS:
‘It’s only really if it’s…if there’s no obvious trigger and if it’s causing significant impact on their life. That’s when it becomes very challenging because I think it’s relatively limited what you can do.’ GP6
GPs recognized that other patients do not return and attributed this to patients either being satisfied with the management offered, or that they simply ‘put up with’ their symptoms:
‘But sometimes they just never come back and then you just assume they've got better [laughter].’ GP14
‘Whether it’s that they just manage it or whether it’s just that we don’t ask them about it any more and they just put up with it I don’t know.’ GP8
It was thought that only a minority of patients would become frequent attenders:
‘I mean there are, I guess a sub group of patients with IBS who are the real sort of somatisers I guess, the real patients that, erm, could be termed doctors heart sink patients, erm, so patients that, that are generally very anxious but are anxious about their health, they’re anxious about every little symptom. There is a small group of patients with IBS who fit into that group and so that group of patients have certain patterns, but I wouldn’t say that all patients with IBS are like that.’ GP18
Diagnosing and labeling
GPs suggested that the first step in making the diagnosis and managing people with IBS is ensuring that the patient’s concerns are listened to:
‘…it helps just to reassure the patient that you’re taking the symptoms seriously. I think that’s probably the biggest worry they have, because when you have some functional symptom and you’ve nothing to show the doctor, it’s almost inevitable that you’re going to wonder whether he’ll take it seriously…’ GP3
Most GPs were aware of the NICE guideline [
12] for IBS but only a minority of GPs suggested using the guideline [
12] to assist them in managing a patient:
‘I am aware of them, yeah I am aware of them, the problem with the NICE guidelines is there's millions of them and it's absolutely impossible in normal general day to day practice to be au fait with them all. I would look at them if I really was struggling with managing a patient’. GP9
The NICE guideline suggests that the diagnosis of IBS should be made in a positive manner considering the symptoms which pointed towards the diagnosis: many GPs felt uncomfortable with this approach, and although few described referring to secondary care to obtain a diagnosis unless there were clear ‘red flag’ symptoms, they described IBS as a diagnosis of exclusion, and the diagnostic process as tentative and iterative, by exclusion of sinister symptoms, the approach taught at medical school:
‘So to a certain extent there’s always a degree of diagnostic uncertainty because… although I know the term isn’t really favoured any more, but pretty much it’s a diagnosis of exclusion.’ GP18
‘So now it’s very difficult, yeah, I read the NICE guidelines and it is about positive, it’s not a diagnosis of exclusion any more, it’s about positive symptoms. I’ve read all that but it’s still very hard to go away from something that was drummed in.’ GP11
Making a diagnosis based on the patient response to medication was also described:
‘…and, you know, their full blood count would be alright, their coeliac screen would be negative, erm…and then we'd…you know, I'd often give them a trial of Mebeverine or something and that quite often does help, and then they just stay on that.’ GP14
GPs reported that they did not initially add a Read code for IBS to the patient record, but delayed until they were more confident in the diagnosis. Thus, codes such as ‘abdominal pain’, ‘diarrhoea’ or ‘constipation’ would remain on the patient record, rather than IBS, and patients who do not return with their gastrointestinal symptoms would not be coded as having IBS:
‘I’d probably put a symptom as the coding on the computer at that stage; the most predominant symptom, but if the patient has come in with the same sorts of things over and over again and it’s looking very much like IBS, and it responds to IBS type treatment, then I’d code it.’ GP1
Approaches to management: NICE-compliant?
All GPs suggested that giving lifestyle advice, predominantly about diet, to help the patient self-manage their condition, was the first step in management, although most conceded that patients had already tried to modify their diet before consulting:
‘Some patients have already identified it – ‘My problems seem far worse when I eat such and such…’ so then we say hang on, why don’t you just not eat such and such and see how you do and if they feel that their symptoms have been looked into adequately enough, and they’re reassured that it’s IBS then they’re happy to do that.’ GP18
Some GPs suggested that a focus on the related psychological symptoms within early consultations might lead to improvement in gastrointestinal symptoms:
‘Then I tend to sort of not label them as IBS straightaway, yeah. I will manage the stress, I will manage their anxiety, I'll manage the depression and see what happens with the symptoms.’ GP13
Despite acknowledging the link between psychological symptoms and IBS, all GPs were reluctant to refer patients with IBS for psychological therapies, which is against the recommendation in the NICE guideline [
12]. GPs described such primary care mental health services as scarce resources with long waiting times, so they felt the need to reserve these interventions for those patients who they felt had more overt mental health symptoms, rather than a condition such as IBS:
‘We can refer to the Mental Health team for the depression, with the hope that it might help the IBS symptoms at the same time. We couldn't refer primarily for the IBS.’ GP12
Although psychological therapies such as CBT and hypnotherapy are recommended interventions for IBS in the NICE guideline [
12] some GPs expressed doubt about the evidence-base for these interventions:
‘…the NHS does need to be careful about where it puts its money because…, perhaps we ought to be putting the money into more evidenced based things.’ GP12
‘I need to be sort of…I’m not quite sure of the link between why CBT might work, the connection between the psychological component and the patient’s IBS, and CBT. I’m assuming there are studies to show that it does work?’ GP2
GPs recognized that many patients sought help from complementary therapists and either encouraged this or at least did not discourage this approach, which is not advocated by the NICE guideline:
‘…what I would call a functional bowel disorder and helping manage triggers, a bit, in terms of diet and lifestyle and looking at stress and if they…you know, if they’re doing that and they want to do a bit of homeopathy, as well, okay.’ GP19
One GP described delivering acupuncture to patients with IBS:
‘Again it’s a balance between getting… being swamped with IBS patients…I told you about a patient who I knew as a friend who, erm, had IBS and he had leakage and when he used to go running, he was very fit, you know, and he used to soil himself I suppose and he tried all medication and I acupunctured him and it stopped him overnight.’ GP16
Despite some recognition that there might be a group of patients who may become frequent attenders, GPs did not feel that a risk assessment tool to predict which patients might become high users of care, and thus might benefit from early intervention, would have any utility particularly given the perceived lack of availability of any treatments or referral options:
‘But don’t we intervene anyway? It’s not as if we sit there doing nothing unless we think someone’s going to be a high consulter, so what actual outcome is that going to have to me and my practice?’ GP6
Other GPs expressed concern about the practicalities of administering such a tool in a time-limited primary care consultation:
‘…I can't be doing with having piles of bits of paper, every speciality has got dozens of bits of paper like this and we work across every single speciality, so having bits of paper in the room is a complete loss.’ GP4
‘…they’re a pain though, using questionnaires in consultations because you have to find it, you have to print it off if you’ve got it on your computer, if you give it to your patient they then…you can send them away to fill it in but if they fill it in there and that’s in a ten minute consultation.’ GP11
So the value of a tool to predict which patients might benefit from early intervention for their abdominal symptoms, and direct management decisions, was perceived to be limited to GPs.
Acknowledgements
We would like to thank all the GPs who gave up their time to be interviewed.
On behalf of the Salford NIHR GI programme Grant Research Group:
Karen Armstrong, David Backhouse, Paula Beech, Peter Bower, Carolyn Chew-Graham, Andrew Clough, Anne Kennedy, Karina Lovell, Jim Nuttall, Sarah O’Brien, Karen Procter, David Reeves, Gerry Richardson, Anne Rogers, David Thompson, and Peter Whorwell.
NIHR disclaimer
This paper presents independent research commissioned by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research funding scheme (RP-PG-0407-10136). The views expressed in this paper are those of the authors and not necessarily those of the NHS, NIHR or the Department of Health.
Competing interests
This study is part of a wider study to test the validity of a risk assessment questionnaire in patients with IBS.
Authors’ contributions
EFH participated in the study design, data collection and analysis, and contributed to writing the paper. VH participated in data collection and analysis, and contributed to writing the paper. SH contributed to data analysis and writing the paper. SJO’B contributed to data analysis and writing the paper. DGT contributed to data analysis and writing the paper. PB contributed to study design, participant recruitment and writing the paper. CCG designed the study, supervised data collection and analysis, and led writing the paper. All authors read and approved the final manuscript.