ECCO 2018: Returning to a normal life with IBD
Even with access to more potent and sophisticated drugs than ever before, IBD professionals still have a long way to go in optimising treatment and alleviating the long-term impact of the disease. Patient empowerment and patient-centred care are essential for reducing the burden of IBD; however, to achieve these clinicians must have a clear understanding of patients’ goals and perspectives…
Articles by Maria Dalby. Interviews by Peter Mas Mollinedo.
Professor Jean-Frederic Colombel (Icahn School of Medicine at Mount Sinai, NY, USA) explains how disability if defined in IBD.
Even with access to more potent and sophisticated drugs than ever before, IBD professionals still have a long way to go in optimising treatment and alleviating the long-term impact of the disease. Patient empowerment and patient-centred care are essential for reducing the burden of IBD; however, to achieve these clinicians must have a clear understanding of patients’ goals and perspectives.
The fact that IBD has a detrimental impact on patients’ quality of life is well known; however, the more objective concept of disability is relatively new in this setting. In a plenary talk at ECCO 2018, Professor Jean-Frédéric Colombel from Mount Sinai Hospital in New York emphasised that based on the definition of disability as impaired body function, limitation of activity and restriction of participation that is influenced by disease, personal and environmental factors, IBD is a chronic disabling condition that affects all dimensions of life – physical, psychological, familial and social.1,2
Professor Colombel and his team have recently collaborated with the WHO to develop an IBD Disability Index (IBD-DI), a huge undertaking which involved healthcare professionals from all levels of IBD care all over the world and took a decade to complete.3,4 Validation of the IBD-DI in a population-based French cohort showed that female gender, long disease duration and high clinical disease activity were significant risk factors for high disability scores, but also that 16% of patients with inactive disease had severe disability.3 Applying the IBD-DI in a cross-sectional study at university hospitals in New Your City revealed that having Medicaid health insurance or an annual household income lower than 25,000 USD were greater risk factors for disability in IBD than having active disease.5 Long-term experience from rheumatoid arthritis and multiple sclerosis indicates that disability can be prevented to a large extent by initiating early treatment with effective therapies;6,7 in IBD, the results of the REACT study have shown that early intervention with combination immunosuppressive therapy in CD results in lower rates of hospital admission, surgery and severe complications – acceptable surrogate markers for disability in Professor Colombel’s opinion – after two years.8 Patient engagement, shared decision-making and recognition of caregiver burden are all key to promoting treatment adherence and maximising success.
Professor Laurent Peyrin-Biroulet (Nancy University Hospital, France) and Dr Michael Scharl (University Hospital Zurich, Switzerland) describe what returning to a normal life means for patients with IBD.
Highlighting the patient perspective on IBD treatment, Dr Corey Siegel from New Hampshire delivered the straightforward message that healthcare professionals can do much better in IBD care. Two decades on from the first approval of infliximab for CD, only a handful of patients receive first-line biologic therapy and less than one patient in five receive biologic therapy at any point.9 In Dr Siegel’s opinion cost is not the main reason for this failure to take advantage of effective treatments early in the disease – more likely it is caused by reluctance on the part of the physician, and/or patients’ perception that biologic therapies may be dangerous. Nevertheless, the shifting of IBD treatment goals in the biologic era – from symptom control to long-term prevention of bowel damage and complications – means clinicians have to adopt a more proactive approach to treatment, and this includes educating patients to help them understand the long-term implications of the disease. Dr Siegel stressed that this can only be achieved by understanding of patients’ goals of therapy. Surveys have shown that patients fear the long-term risk of developing cancer or having an ostomy more than they fear adverse drug effects,10 and also that patients perceive biologics as more risky than immunomodulators but still less than bowel resection and steroids.11 Adopting a patient-centred approach need not be more complicated than asking the patient “What is your greatest concern or goal related to your IBD?” and encourage the patient to think beyond specific symptoms – this will allow the clinician to focus the consultation and proactively address issues and barriers to long-term quality care.
- Casellas F, Lopez-Vivancos J, Vergara M, et al. Impact of inflammatory bowel disease on health-related quality of life. Dig Dis 1999;17:208-18.
- Allen PB, Gower-Rousseau C, Danese S, et al. Preventing disability in inflammatory bowel disease. Therap Adv Gastroenterol 2017;10:865-876.
- Gower-Rousseau C, Sarter H, Savoye G, et al. Validation of the Inflammatory Bowel Disease Disability Index in a population-based cohort. Gut 2017;66:588-596.
- Peyrin-Biroulet L, Cieza A, Sandborn WJ, et al. Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health. Gut 2012;61:241-7.
- Agrawal M, Cohen-Mekelburg S, Kayal M, et al. P826 Lower socioeconomic status is associated with disability in inflammatory bowel disease patients. Journal of Crohn’s and Colitis 2018;12:S533-S534.
- Burmester GR, Kivitz AJ, Kupper H, et al. Efficacy and safety of ascending methotrexate dose in combination with adalimumab: the randomised CONCERTO trial. Ann Rheum Dis 2015;74:1037-44.
- Kappos L, Freedman MS, Polman CH, et al. Effect of early versus delayed interferon beta-1b treatment on disability after a first clinical event suggestive of multiple sclerosis: a 3-year follow-up analysis of the BENEFIT study. Lancet 2007;370:389-97.
- Khanna R, Bressler B, Levesque BG, et al. Early combined immunosuppression for the management of Crohn’s disease (REACT): a cluster randomised controlled trial. Lancet 2015;386:1825-34.
- Siegel C, Yang F, Eslava S, et al. DOP060 Real-world treatment pathway visualizations show low use of biologic therapies in Crohn’s disease and ulcerative colitis in the United States. Journal of Crohn’s and Colitis 2017;11:S61-S62.
- Thompson KD, Connor SJ, Walls DM, et al. Patients with Ulcerative Colitis Are More Concerned About Complications of Their Disease than Side Effects of Medications. Inflamm Bowel Dis 2016;22:940-7.
- Koliani-Pace JL, Haron A, Thompson K, et al. Patients Perceive Biologics to be Riskier and More Dreadful Than Other IBD Medications. Am J Gastroenterol 2017; 112:P2161.