Quality of life, functional impairment and healthcare experiences of patients with irritable bowel syndrome in Norway: an online survey | BMC Gastroenterology

IBS significantly reduces the quality of life of affected patients in the Western world (specifically, in North America and Europe) [3,4,5,6]. IBS adversely affects daily functioning, thoughts, feelings and behaviours [7]. Feelings of the loss of freedom, spontaneity and social contacts, and of fearfulness, shame and embarrassment have been reported by patients with IBS [1, 7]. Furthermore, IBS symptoms impair earnings and the abilities to travel and have a normal sex life [1, 7, 8]. The quality of life of patients with IBS is reduced by similar degrees as for other chronic diseases such as inflammatory bowel disease, rheumatoid arthritis and kidney failure, and is reduced by greater degrees than for patients with diabetes mellitus, asthma and gastroesophageal reflux [4, 6, 9, 10]. Almost all (97%) of the patients in the present study reported that IBS reduces their quality of life. Of these patients, 73% reported that it affected their quality of life markedly, and on a daily basis in about 34% of them. Most of the included patients reported that IBS impaired their social life (90%), sexual life (69%) and work/study (94%). Moreover, 70% of the patients reported that they felt disgusting. IBS is also an economic burden to the patients due to the extra costs associated with the condition (91%), and the loss of earnings from unemployment (29%) or work absences (12%). Only 23% of the patients reported that their employers understood their condition, with only 6% stating that during their studies the educational institute demonstrated an understanding of their condition. It is noteworthy that 42% of the patients with IBS did not inform their employer about their condition, which could be due to the fear of being stigmatized by their employer and co-workers or even losing their job. Together these findings imply that IBS exerts marked adverse effects on these patients’ quality of life.

In addition to IBS symptoms, 90% of the patients who completed the questionnaire suffered from chronic fatigue. It has also been reported previously that chronic fatigue is associated with IBS in up to 96% of patients with IBS, and it was suggested that IBS and chronic fatigue have the same underlying mechanisms [11, 12]. Associations of 11 intestinal bacteria with both IBS and chronic fatigue were reported very recently, further supporting the assumption of a common pathophysiology [13].

IBS patients constitute a considerable workload for both the primary and secondary healthcare systems, comprising 12–14% of primary-care patient visits and 28% of referrals to gastroenterologists [14,15,16]. IBS as a reason to visit to a physician is more common than for diabetes, asthma and hypertension [17, 18]. There are substantial healthcare costs for resource use related to healthcare delivery, condition investigations, hospitalization, visits to casualty departments and to emergency rooms and treatments [1]. For example, the annual healthcare costs for IBS patients have been estimated at £45.6–200 million in the UK, €3–4 billion in Germany, €43 million in Finland and US$ 2 billion in China). In the USA the healthcare costs have been estimated at US$ 1,562–7,547 per patient annually [19,20,21,22,23,24,25]. In the present survey, 37% of the patients with IBS had to visit their GP more than 3 times before being diagnosed, and 45% more than 10 times. Moreover, investigating their condition required a large number of blood tests, faecal pathological bacterial cultivations, endoscopies, radiological examinations and ultrasound examinations. All of these factors contributed to the substantial healthcare costs.

The uunemployment rate in Norway in December 2022 was 3.4% ( The present survey revealed that the unemployment rate among IBS patients was 38%, which is therefore more than 10-fold that of the general population. Moreover, this study showed that 12% of IBS patients were on sick leave and 37% were absent from work/study for more than 10 days annually. In addition, 94% of the IBS participating patients reported that IBS impaired their work/study. These aspects together indicate that the indirect costs to society in the form of lost work productivity and sickness or disability benefits are considerable.

Many patients with IBS are dissatisfied with the clinical management they receive [1, 26]. The present survey found that 44% of the IBS patients waited more than 2 years before seeking a doctor for their symptoms, and that about half of them had to discuss their symptoms with their GP more than 10 times and 54% waited more than 1 year before being diagnosed. Most of the IBS patients (85%) reported that both GPs and gastroenterologists showed them courtesy and respect when discussing their symptoms, but a considerable proportion of them did not feel that their GP (54%) or gastroenterologist (23%) took their complaints seriously. It noteworthy that it takes time to gain the indispensable patients confidence where MD’s time for each patient is limited. A considerable proportion of the IBS patients reported that they were not satisfied with the help they received from their GP (46%) or gastroenterologist (34%). Only 21% reported that the treatment they received actually helped them. It may therefore be concluded that Norwegian IBS patients, like other IBS patients worldwide, are dissatisfied with the clinical management that is currently applied for their condition. It is worthy of note that 60% of the IBS patients participated in the survey was diagnosed by a gastroenterologist though the guidelines in Norway recommends that IBS patients should be diagnosed in primary care, and that referral to a gastroenterologists should be limited to patients with special features or heavy symptom burden.

Only 18% and 43% of the IBS patients who participated in this survey believed that their GP and gastroenterologist, respectively, were sufficiently knowledgeable about IBS. IBS is diagnosed based on symptom assessments as described by the Rome criteria [27,28,29,30,31,32,33]. The Rome criteria without red flags and medical history and physical examinations are effective in diagnosing IBS. The effectiveness of the Rome criteria was confirmed in a study of about 1,500 Norwegian IBS patients [34]. Despite this established diagnostic method, GPs and gastroenterologists subjecting the survey participants to a unnecessary large number of tests including endoscopy of the upper and lower gastroenterology tracts. The findings in this survey showed that there is a need for physicians who care for this patient group to improve insight and develop communicative skills, which could save resources and suffering.

The main strength of this survey was that it was answered by a relatively large number of IBS patients. However, the main limitation of this study, like other online survey, was that it was answered by people used to digital habits. Moreover, 327 who answered the questionnaire were excluded because they were not diagnosed by a medical doctor. These excluded persons could have IBS, but did not seek medical help.