Impact of IBS on patients

Interview conducted by April Cashin-Garbutt, MA (Editor)Jan 16 2017

An interview with Professor Maura Corsetti, MD PhD, conducted by April Cashin-Garbutt, MA (Cantab)

What did the recent IBS Global Impact Report reveal about the personal and economic impact of Irritable Bowel Syndrome (IBS)?

This report reveals a quite alarming situation about the economic impact of IBS on healthcare system, society and patients themselves.

In particular, it disclosed that there are a lot of hidden costs related to the utilization of healthcare resources by means of patients, frequently not recognized as IBS, undergoing many unnecessary investigations and even surgical operations, and not receiving appropriate treatments.

IBS represents also a frequently unrecognized relevant burden for the society in terms of loss of work productivity both for absenteeism (missed days at work) and presenteeism (decreased work productivity).

In my own experience it is indeed not infrequent that these patients are off work for months because of their symptoms. IBS finally significantly impaired the quality of life of these patients who avoid their social activities, as, for example, afraid of not being able to control their diarrhea.

This social impairment also impacts on the quality of life of relatives and partners of these patients who are forced to live a “restricted” life.

Were you surprised by the findings?

As gastroenterologist with specific interest in these functional disorders of course I was aware of many of these aspects. However, many findings still surprised me a lot.

In particular, the fact that in general these patients can wait up to 4 years to receive a proper diagnosis; the relevance of IBS impact on health care systems across different countries and how this economic burden is currently underestimated; the IBS impact on society and quality of life of this patients and their relatives and once again how this aspect is not appreciated.

Why can it take up to an average of 4 years for a patient to receive a positive diagnosis of IBS?

The main reason is because most of the clinicians are not aware of the different aspects of IBS and in particular about the fact it can present with multiple symptoms and associate with many gastrointestinal and other disorders (such as fibromyalgia).

Moreover, as most of the clinicians are not trained to deal with these patients, they feel uncomfortable to make a positive diagnosis of IBS and continue to request investigations to avoid the risk of missing an organic disease (i.e. cancer).

Is there a universally accepted standard of care upon diagnosis? Why not?

No there isn’t and this is the consequences of different aspects. First of all, until recently, we have not been able to offer these patients effective treatments, the efficacy of the available drugs was unclear and the criteria to evaluate new drugs varied a lot across different countries.

In the last years there have been an extensive effort in revising the efficacy of available treatments according to evidence based methodology and also in evaluating the efficacy of new drugs according to similar criteria across different countries.

It is now probably the moment to start collaboration to create a universally accepted standard of care, even though this needs to be accompanied by the support of regulatory agencies of different countries in order to make possible to offer the effective drugs to all the patients who need them.

At the moment for example in UK patients with IBS can get drugs reimbursed by the healthcare while in Italy or other countries this is not the case.

What changes do you think need to be made to the care of patients with IBS?

I honestly think it is time the government realise that IBS is a real disease, which of course represents a relevant problem for patients and their family (how do you cope with having about 10 diarrhea episodes per day and being, for example, a business man who has to fly frequently or a teacher who has to work with other people and use public toilets being afraid you won’t have them free as soon as you need?).

However, this represent a bigger, even if not yet realized in its real burden, problem for healthcare system and society too. These people are indeed using resources, costing money, and they are also not able to perform properly in their job. This affects a lot the “pockets” of the entire society.

I think the direction should be to create an integrated system where all the players involved in the treatment of these patients seat together to decide a common diagnostic and therapeutic pathway based on evidences.

The specific aim should be to fill the gaps of knowledge with high-quality multicentre studies where necessary and to improve the management of this patients, also in a cost-effective way.

How useful are the Rome IV Diagnostic Criteria and do you think any additional guidelines are needed?

The Rome criteria have been quite useful to allow the enrolment of a homogeneous population of IBS patients for clinical trials investigating the efficacy and safety of treatments. The update Rome IV version recently released has made an effort to further simplify the criteria in order to make more useful their application also in clinical practice.

I definitely think these criteria are useful also in clinical settings even though we probably need to be more effective in communicating how simple they are. And of course there is room to improve them but I don’t think we need to waste all the important work has been done in the years to develop these criteria.

Is there a lot of variation in patient experience of IBS? How can this be accounted for?

Of course each patients is different from another as he/she has her/his own history. However, all these patients share the same terrible burden of a disease that has been so long considered as a psychological disturb, ignored by doctors themselves and by the society, and that now represent one of the major causes of consultation in gastroenterology department and I suspect also in other field where these patients are frequently treated or even operated as not properly diagnosed.

Moreover, it should be underlined that IBS can also overlap with many other organic disease, like ulcerative colitis and post-surgical conditions. Indeed we are finally recognizing that it is quite possible that IBS could be the reason of many cases of refractory symptoms in patients with inflammatory bowel diseases in remission.

What additional research is needed to further understand IBS?

In the last years there have been a great progress in the understanding the possible mechanisms of IBS. We are becoming aware of the possible effect of different foods in the modulation of gut function and we now have new techniques to study also factors like gut secretion. I think we have to continue in this direction and in particular try to aim to develop better instruments to measure the burden and economic costs of IBS and to assess gut function, its response to physiological stimuli and how to assess the effect of drugs to modulate these aspects.

What do you think the future holds for people with IBS?

I think we are going in the right direction and luckily in this field there a lot of passionate clinicians and researchers who have been trained in the management of IBS, continue to enjoy studying to improve their knowledge and develop better diagnostic and therapeutic approach for this disorders. Patients should be reassured….we are working for them!

Where can readers find more information?

They can start reading the report. Then I am in the process of writing together with other international experts a further commentary on this topic making a proposal on how the management of these patients could be improved. However I am also more than happy to suggest other sources of information personally. I am quite busy, but I always find time to inform and discuss with my patients their doubts.

About Professor Corsetti

Prof Maura Corsetti, MD PhD, Clinical associate Professor in Gastroenterology. Nottingham Digestive Diseases Centre, University of Nottingham.

Maura obtained her Specialization (2000) and PhD (2004) in Italy, where she then worked for eight years as referral consultant for functional bowl disorders (i.e. IBS) and lead of the Motility Unit of one of the most important university hospital in Milan, the San Raffaele University Hospital.

She then moved to Belgium, where she spent also part of her PhD, to work in the lab of Prof Jan Tack as Senior Research Supervisor (2012-2016). During this period she acquired the expertise, unique in

Europe, to study the colonic motility in adults by means of a new technique, the colonic high-resolution manometry. She recently moved to UK to join, as Associate Professor in Gastroenterology, the Nottingham Digestive Diseases Centre. She is now the referral consultant for functional bowel disorders, lead the Motility Unit at Queen’s Medical Centre of Nottingham and continues her research focusing on the role of altered motility in the pathophysiology of symptoms of functional disorders.

Combining her expertise in the study of gut motility with that of the team working on the Nobel Prize winning MRI center of Nottingham, she is now working together with Prof Robin Spiller to develop a non-invasive technique to study gut function and to assess the effect of new treatments.