Dr Joana Torres, Gastroenterologist, Expert in Clinical IBD and UEG* Rising Star Awardee, highlights the most challenging aspects of living with inflammatory bowel disease and the unmet medical needs in IBD management
Inflammatory bowel disease (IBD) is a chronic, life-long disease that evolves in a relapsing and remitting mode, potentially resulting in progressive bowel damage and, ultimately, disability. The cause of the disease remains unknown, but IBD is believed to result from a complex interaction of environmental factors, genetic susceptibility and altered microbiome (the intestinal flora or the bugs that live inside our intestines).
So far, no curative treatment is available. While the disease can occur at any age, it is typically diagnosed in late adolescence or early adulthood. IBD is characterised by chronic and irreversible inflammation in the gut. Typical symptoms include abdominal pain, diarrhoea, rectal bleeding, anaemia, fatigue, and weight loss. In addition, up to 50% of patients may experience extra-intestinal manifestations, the most frequent being joint pain.
Two types of inflammatory bowel disease
There are two types of inflammatory bowel disease – Crohn’s disease [CD] and Ulcerative Colitis [UC]. Crohn’s disease can affect any gastrointestinal tract site, from the mouth to the anus. In CD, all layers of the bowel wall can be affected by the inflammatory process, so untreated or poorly treated inflammation can lead to complications that frequently require surgical treatment. (1) It is estimated that around 50% of CD patients will have their first bowel surgery after ten years of disease. Unfortunately, surgery is not curative, and many patients relapse, eventually needing more surgeries.
Ulcerative colitis typically affects only the colon, and inflammation spreads continuously from the anus to the most proximal extent, leading to an increased risk of colorectal cancer. (2)
Most epidemiological studies show that the incidence of IBD continues to increase significantly in many regions of the world (3) and in the paediatric population. (4) Being a life-long chronic disease with a young age at onset, IBD’s prevalence will continue to increase in the following decades. By 2030, around 1% of the population is expected to live with IBD.
The impact of IBD on patients and society is significant, as the disease is usually diagnosed at a young age and affects people in their most productive years, impacting their quality of life, including their social and personal interactions, education, employment prospects and workability. (5)
Inflammatory bowel disease: Unmet medical needs
Over the past two decades, many advances have been made in the therapeutic management and monitoring of IBD, yet several unmet medical needs remain:
Delay in diagnosis
Delay in diagnosis, especially in CD, can reach up to 24 months and may be associated with more severe and complicated disease, highlighting the need for greater public awareness of disease symptoms in the general population and outside of specialised care.
Approaching the patient holistically
Living with IBD is not easy. Many patients experience insufficient recognition of their symptoms and their disease, have difficulty accessing specialised care or getting early access to drugs. Besides, aspects of the disease such as anxiety, fatigue, stress, poor diet or sleep are still not adequately addressed. Restoring the quality of life should be the ultimate long-term outcome in IBD management, and this often requires a multidisciplinary approach that is frequently missing outside large academic centres.
Difficulty in reaching disease remission & predict disease course and response to therapies (personalised medicine)
Despite major advances in drug development and better therapeutic strategies, the proportion of patients achieving a complete response remains regrettably low. (7) The fact is that once diagnosed, drug-free remission is not possible in most patients. (8) It is estimated that even with advanced therapies, remission is at best around 50%, highlighting the need to develop better therapies. Furthermore, there are significant differences in the presentation and progression of the disease in each patient. Despite this heterogeneity, current treatment algorithms suggest a standard approach to all patients without considering the individual and molecular specificities of the disease or individual patients’ risk factors for therapy-related complications. However, it is clear that IBD treatment needs to move away from a “one size fits all” approach. There is a pressing need to identify biomarkers that could predict response to therapy or therapy-specific complications. (6)
Lack of preventive intervention
Currently available drugs used to treat IBD cannot fully reverse the pathological processes of inflammation to a pre-disease state. Therefore, to efficiently modify disease course and the long-term consequences of IBD, an effective intervention should ideally target the processes that prompt disease initiation or the secondary triggers that promote disease progression. (9) However, to date, no set of validated biomarkers can accurately and precisely predict disease onset, nor any known intervention that can intercept disease initiation.
In summary, inflammatory bowel disease is a disease of a lifetime whose burden is expected to increase further over the following years. Therefore, there is a clear need to invest in new research avenues, therapeutic strategies and prevention measures.
* United European Gastroenterology (UEG) unites over 50,000 engaged professionals from national and specialist societies, individual digestive health experts and related scientists from all fields and career stages
1. Torres J, Mehandru S, Colombel JF, et al. Crohn’s disease. Lancet 2017;389(10080):1741-55. doi: 10.1016/s0140-6736(16)31711-1 [published Online First: 2016/12/05].
2. Ungaro R, Mehandru S, Allen PB, et al. Ulcerative colitis. Lancet 2017;389(10080):1756-70. doi: 10.1016/s0140-6736(16)32126-2 [published Online First: 2016/12/05].
3. Ng SC, Shi HY, Hamidi N, et al. Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: a systematic review of population-based studies. Lancet 2017;390(10114):2769-78. doi: 10.1016/s0140-6736(17)32448-0 [published Online First: 2017/10/21].
4. Kuenzig ME, Fung SG, Marderfeld L, et al. Twenty-first Century Trends in the Global Epidemiology of Pediatric-Onset Inflammatory Bowel Disease: Systematic Review. Gastroenterology 2022;162(4):1147-59.e4. doi: 10.1053/j.gastro.2021.12.282 [published Online First: 2022/01/08].
5. Rocchi A, Benchimol EI, Bernstein CN, et al. Inflammatory bowel disease: a Canadian burden of illness review. Can J Gastroenterol 2012;26(11):811-7. [published Online First: 2012/11/21].
6. Verstockt B, Noor NM, Marigorta UM, et al. Results of the Seventh Scientific Workshop of ECCO: Precision medicine in IBD – disease outcome and response to therapy. J Crohns Colitis 2021 doi: 10.1093/ecco-jcc/jjab050 [published Online First: 2021/03/18].
7. Danese S, Parigi TL, Peyrin-Biroulet L, et al. Defining difficult-to-treat inflammatory bowel disease: why and how. Lancet Gastroenterol Hepatol 2021 doi: 10.1016/S2468-1253(21)00141-2 [published Online First: 2021/05/22].
8. Torres J, Boyapati RK, Kennedy NA, et al. Systematic Review of Effects of Withdrawal of Immunomodulators or Biologic Agents From Patients With Inflammatory Bowel Disease. Gastroenterology 2015;149(7):1716-30. doi: 10.1053/j.gastro.2015.08.055 [published Online First: 2015/09/19].
9. Torres J, Halfvarson J, Rodriguez-Lago I, et al. Results of the Seventh Scientific Workshop of ECCO: Precision medicine in IBD- prediction and prevention of inflammatory bowel disease. J Crohns Colitis 2021 doi: 10.1093/ecco- jcc/jjab048 [published Online First: 2021/03/18].
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