An Evolving Redefinition of Severity in Irritable Bowel Syndrome (IBS)

Moderate or severe IBS can be costly in many ways. There are obviously physical costs as people struggle with symptoms and/or the side effects of various treatments. There are social costs, as chronic symptoms strain relationships with many family members and friends and lead many people with IBS to avoid outings or events, isolate themselves or wonder how or if to discuss IBS with those who do not have it. There are educational or employment costs as a result of sometimes unpredictable absences or decreased productivity even though one may be at work or in school.  Some people with IBS are not able to maintain employment at all as a result of IBS or a combination of IBS and other medical conditions or disabilities and may seek disability benefits in their countries, such as Social Security or veteran’s benefits in the U.S.  Of course, there are also financial costs, both to individuals and society, for medical care and/or items or personal assistance that people may need as they attempt to accommodate IBS in their daily living on a long term basis.

The Unmet Needs Survey, an in-depth ongoing study begun in 2007 by IFFGD and the University of North Carolina Center for Functional GI and Motility Disorders,  has begun to quantify these issues in detail. This online study is open to all adults from any country with IBS symptoms, whether officially diagnosed or not.  The first report, “IBS Patients: Their Illness Experience and Unmet Needs” was published in the medical literature and by IFFGD in 2009. These results, as well as other data from literature reviews and Rome Foundation focus groups, appear to be beginning to change historical perceptions of IBS, even within the functional GI field itself. In July 2011, the Rome Foundation Working Team Committee, consisting of eight leading professionals in the field from the United States, Australia, the United Kingdom and Spain, published a report, “Severity in Irritable Bowel Syndrome: A Working Team Report” in the American Journal of Gastroenterology. In part, the report found  that,“severity in IBS is defined as a biopsychosocial composite of patient-reported gastrointestinal and extraintestinal symptoms, degree of disability, and illness-related perceptions and behaviors” as well as  “…both visceral and central nervous system physiological factors  affect severity; as severity increases, the central nervous system provides a greater contribution…” and  “…severity is related to and influences health-related quality of life and health behaviors…”

 Another interesting change mentioned is the categorization of IBS severity into approximately 40% mild, 35% moderate and 25% severe under this evolving standard. The authors acknowledge in the article that their own previously published and widely quoted figures of 70% mild, 25% moderate and 5% severe have appeared to underestimate the overall prevalence of severe IBS for various reasons. The report offers several recommendations to their colleagues for future research and development of guidelines to confirm and assess this emerging information and how it can be applied to the diagnosis, treatment and research of IBS in the years to come.

While the idea that many more people with IBS struggle with moderate or severe symptoms and diminished quality of life than previously believed is unfortunate, in some ways, the information appears to be promising for the IBS community. This is because it officially validates the complexity and seriousness of the experiences of those of us who happen to be part of the moderate to severe subset. For decades, IBS has not been widely regarded as a priority because the percentage of people who are significantly hindered by it was believed to be a very small minority. If, in fact, these newer statistics hold up to further scientific scrutiny, then those who are considered to have moderate or severe IBS actually will comprise a slight majority of all people with IBS. In that case, it likely will be easier for people with IBS, our loved ones, and the professionals who work on our behalf to advocate for our needs in the manner that the high prevalence of IBS deserves.

Readers of this blog are encouraged to participate in the Unmet Needs Study, to read the first set of results and to read the Rome Foundation article as linked above. Here we see an example of a large number of study volunteers having a direct impact on the work of functional GI thought leaders. It will take many years for all of their recommendations to be put into practice and to bear fruit, but this report does appear to be positive forward motion toward that end.

• Posted in: Clinical Trials ♦ Functional Gastrointestinal and Motility Disorders ♦ IBS ♦ Irritable Bowel Syndrome ♦ Research