Table 2 Consensus statements for IBD research priorities
Number | Statement | Results | Grade | Rank |
|---|---|---|---|---|
Domain 1: understanding the global epidemiological burden | ||||
1.1 | Geospatial and temporal analyses of the global incidence and prevalence of IBD should study the evolution of IBD across four epidemiological stages: emergence (stage 1); acceleration in incidence (stage 2); compounding prevalence (stage 3); and prevalence equilibrium (stage 4). Transition across epidemiological stage offers the opportunity to study the genetic, environmental and microbial determinants of the pathogenesis of IBD | A + SA = 90.8% | A | 2 |
A = 74.9% SA = 15.9% SD = 1.4% D = 0.5% NQ = 7.3% | ||||
1.2 | The rising prevalence of IBD in stage 3 (compounding prevalence) is forecast to lead to a prevalence that exceeds 1% of the population over the next decade in developed nations. Therefore, high-quality population-based research on health-care system delivery is necessary to prepare personnel, resources and medical infrastructure to address the rising number of people with IBD and an ageing IBD population with greater burden of comorbidities | A + SA = 96.2% | A | 1 |
A = 84.1% SA = 12.1% SD = 1% D = 0 NQ = 2.8% | ||||
1.3 | Standardization of study design and analyses of epidemiological research across different geographical jurisdictions is required to address the heterogeneity in epidemiological data between regions and to differentiate improved detection from changing biology of IBD | A + SA = 92.2% | A | – |
A = 72.9% SA = 19.3% SD = 1.5% D = 0.5% NQ = 5.8% | ||||
1.4 | Unexplained rising incidence of paediatric-onset IBD, including very early-onset IBD necessitates studies on genetic, environmental, dietary and microbial exposures occurring during early life or in utero. Since children with IBD are exposed to fewer environmental factors over their shorter lifetime, we should be better able to identify risk and/or protective factors that may be subject to intervention | A + SA = 91.3% | A | – |
A = 73.4% SA = 17.9% SD = 2.4% D = 1.0% NQ = 5.3% | ||||
1.5 | Cohorts of individuals at higher risk of developing IBD may identify biomarkers (for example, genetic, serological, proteomic, metabolomic, microbial) of individuals at high risk of developing IBD who could be targeted for future interventional studies that modify the environmental and behavioural determinants of IBD or clinical trials to prevent the onset of IBD | A + SA = 95.2% | A | – |
A = 72.5% SA = 22.7% SD = 1.0% D = 1.0 % NQ = 2.8 % | ||||
1.6 | There is a need for epidemiological research for under-represented populations with IBD, including age-stratified, sex and gender groups, ethnic minority groups, indigenous peoples, people of low socioeconomic status, and migrants and their offspring who travel between countries of differing incidence | A + SA = 94.2% | A | 3 |
A = 74.4% SA = 19.8% SD = 2.9% D = 1.0 % NQ = 1.9% | ||||
1.7 | Global surveillance of phenotyping, diagnosis, course and management using standardized definitions are necessary to compare IBD across different regions throughout the world and allow for the development of cascading guidelines that account for access and availability of health-care resources in each country. | A + SA = 95.6% | A | – |
A = 71.5% SA = 24.1% SD = 2.1% D = 0% NQ = 2.3% | ||||
Domain 2: defining and implementing care models | ||||
2.1 | Patients, their carers, relatives, patient organizations and relevant health-care providers should be engaged in the design of patient-centred IBD care models | A + SA = 95.7% | A | – |
A = 69.1% SA = 26.6% SD = 3.4% D = 0.1% NQ = 0.8% | ||||
2.2 | Specialized models of care for timely IBD diagnosis, prognostic evaluation and evidence-based management should be implemented, with consideration given to hub-and-spoke models that leverage multidisciplinary teams and technology to improve access to care | A + SA = 95.7% | A | – |
A = 77.3% SA = 18.4% SD = 0.5% D = 0 NQ = 3.8% | ||||
2.3 | Health system decision-makers should be engaged and informed about the direct and indirect financial implications of emerging and evolving models of care in IBD | A + SA = 98.6% | A | 3 |
A = 80.7% SA = 17.9% SD = 0.5% D = 0 NQ = 0.9% | ||||
2.4 | Context-specific and resource-specific IBD multidisciplinary models of care should be developed to promote evidence-based diagnosis, prognostic evaluation and management of patients with IBD | A + SA = 95.7% | A | – |
A = 78.3% SA = 17.4% SD = 2.4% D = 0 NQ = 1.9% | ||||
2.5 | Medical societies and health authorities should develop clear guidance on care pathways that promote the timely referral of patients with suspected or proven IBD within relevant health-care settings, incorporating context-specific adaptations where needed | A + SA = 96.1% | A | 2 |
A = 82.1% SA = 14.0% SD = 2.4% D = 1.0% NQ = 0.5% | ||||
2.6 | IBD specialists should collaborate with primary care experts, general internists, general surgeons, nurses, dieticians and psychologists to determine how patients with alarm symptoms or bad prognostic features can be identified in primary care settings and referred to adequate specialized care | A + SA = 98.5% | A | 1 |
A = 87.9% SA = 10.6% SD = 1.1% D = 0.4% NQ = 0% | ||||
Domain 3: defining and implementing treatment strategies | ||||
3.1 | Clinical pathways should be developed to optimize the early identification, diagnosis and appropriate medical and surgical interventions in patients with IBD | A + SA = 98.1% | A | 1 |
A = 88.9% SA = 9.2% SD = 0.7% D = 0.7% NQ = 0.5% | ||||
3.2 | The role of presymptomatic diagnosis and/or prevention should be assessed to mitigate the risk of IBD by delaying diagnosis, attenuating the disease course, preventing disease onset and modifying the natural history of IBD | A + SA = 93.3% | A | – |
A = 69.6% SA = 23.7% SD = 4.8% D = 1.4% NQ = 0.5% | ||||
3.3 | Thresholds and treatment strategies across the spectrum of IBD, including mild-to-moderate and moderate-to-severe disease, should be clearly defined | A + SA = 95.1% | A | – |
A = 71.0% SA = 24.1% SD = 2.9% D = 0 NQ = 2.0% | ||||
3.4 | The most mechanistically appropriate and operationally feasible pharmacological and non-pharmacological combination treatment regimens that safely maximize treatment efficacy for patients with IBD should be evaluated | A + SA = 96.1% | A | 3 |
A = 81.2% SA = 14.9% SD = 1.4% D = 1.0% NQ = 1.5% | ||||
3.5 | The nuances of unique patient populations, such as paediatric patients, older patients, pregnant patients and those with comorbid immune-mediated disorders or primary sclerosing cholangitis should be recognized. The impact of different sexual orientation, and racial, ethnic and minority backgrounds, should be recognized | A + SA = 93.2% | A | – |
A = 73.4% SA = 18.8% SD = 4.8% D = 1.0% NQ = 2.0% | ||||
3.6 | New methods and tools should be developed to evaluate fibrosis and penetrating complications, which might lead to the development of drugs with other mechanisms of action beyond control of inflammation for the treatment of Crohn’s disease | A + SA = 94.2% | A | 2 |
A = 81.6% SA = 12.6% SD = 2.4% D = 0.5% NQ = 2.9% | ||||
Domain 4: promoting education and awareness initiatives | ||||
4.1 | Updated curricula should be developed, evaluated and funded, focusing on undergraduate and postgraduate medical schools, as well as specialist colleges and societies dedicated to IBD | A + SA = 93.2% | A | – |
A = 70.5% SA = 22.7% SD = 4.3% D = 0.5% NQ = 2.0% | ||||
4.2 | The availability of educational courses and toolkits on IBD, including thorough formal medical curricula and continuing education, should be expanded with particular emphasis on addressing diet and nutrition. Collaboration across disciplines, including medical and surgical specialties, is crucial to ensure comprehensive education and up-to-date guidance for managing IBD | A + SA = 96.1% | A | 3 |
A = 78.7% SA = 17.4% SD = 2.9% D = 0.5% NQ = 0.5% | ||||
4.3 | Best practice educational resources for primary care providers and specialists should be developed on the importance of early diagnosis and referral to appropriate specialists for the diagnosis and management of IBD | A + SA = 96.7% | A | 2 |
A = 81.2% SA = 15.5% SD = 1.0% D = 1.3% NQ = 1% | ||||
4.4 | Awareness of the holistic management required for IBD encompassing biopsychosocial needs should be promoted among health-care providers and patients | A + SA = 96.6% | A | – |
A = 76.8% SA = 19.8% SD = 2.4% D = 1.0% NQ = 0% | ||||
4.5 | Strategies involving paediatric professionals should be developed to increase awareness of the challenges in transitioning from paediatric to adult-based care. Emphasis should be placed on empowering parents to gradually step back from their roles, while supporting young adults in taking ownership of their health-care responsibilities | A + SA = 95.2% | A | – |
A = 75.4% SA = 19.8% SD = 1.4% D = 1.5% NQ = 1.9% | ||||
4.6 | All patients with IBD should be educated on the importance of early diagnosis and effective intervention, the definition and route to sustained quality of life, disease modification and functional remission | A + SA = 96.6% | A | 1 |
A = 82.1% SA = 14.5% SD = 2.4% D = 1.0% NQ = 0 | ||||
Domain 5: integrating patients and community perspectives | ||||
5.1 | It is important to better understand patients’ care goals and how to best align these with the clinical goal of achieving endoscopic healing reflected by the disappearance of ulcers and normalization of the mucosa | A + SA = 96.6% | A | 2 |
A = 79.7% SA = 16.9% SD = 1.0% D = 1.0% NQ = 1.4% | ||||
5.2 | There is a need to learn how to effectively partner with primary care providers to co-manage IBD throughout a patient’s journey. Specifically relevant are a nurse-led IBD advice line and a dedicated ‘flare clinic’ | A + SA = 94.2% | A | – |
A = 69.6% SA = 24.6% SD = 3.9% D = 0.5% NQ = 1.4% | ||||
5.3 | Novel health-care delivery models should be developed to ensure equitable access to specialty IBD centres for all patients. It is essential to create coordinated pathways for transitioning between primary gastrointestinal care and specialty IBD centres based on patient needs, as well as to establish standards of care for patients with IBD transitioning from paediatric to adult gastrointestinal care | A + SA = 95.2% | A | 3 |
A = 77.8% SA = 17.4% SD = 1.4% D = 1.5% NQ = 1.9% | ||||
5.4 | It is important to identify community resources needed to better support and empower patients with IBD | A + SA = 96.6% | A | – |
A = 73.9% SA = 22.7% SD = 1.4% D = 0.6% NQ = 1.4% | ||||
5.5 | There is a need to gain a deeper understanding of how IBD affects patients’ lives beyond gastrointestinal symptoms; specifically, allocating resources for psychosocial support and addressing the mental health needs of patients | A + SA = 95.6% | A | 1 |
A = 80.7% SA = 14.9% SD = 3.4% D = 0.5% NQ = 0.5% | ||||
5.6 | It is necessary to learn how the burden of IBD may impact the family, friends and caregivers of patients | A + SA = 94.1% | A | – |
A = 71.9% SA = 22.2% SD = 4.3% D = 0.5% NQ = 1.1% | ||||
Domain 6: promoting leadership and policies for health equity | ||||
6.1 | Institutions responsible for delivering IBD care should encourage studies that illustrate the extent of health-care and health inequities across socioeconomic, demographic, regional and cultural gradients. Research should also specifically examine the impact of governance models and policies on health-care access, experience and outcomes in IBD | A + SA = 91.8% | A | – |
A = 68.1% SA = 23.7% SD = 5.5% D = 0.5% NQ = 2.2% | ||||
6.2 | The development of core outcome sets or benchmarking of measurable minimum standards in health and health-care equity in IBD would provide objective end points for research. These outcome sets should be individualized and tailored for different strata of IBD-associated health inequity at institutional, local, national and international levels | A + SA = 92.2% | A | 3 |
A = 71.5% SA = 20.7% SD = 1.9% D = 1.0% NQ = 4.9% | ||||
6.3 | SDOH encompass socioeconomic and contextual factors outside of medical care that influence outcomes in IBD. There is a pressing need for national and international IBD research partnerships that address the impact of SDOH and how these can be ameliorated to improve outcomes for disadvantaged groups | A + SA = 92.7% | A | – |
A = 68.6% SA = 24.1% SD = 2.4% D = 0.6% NQ = 4.3% | ||||
6.4 | Similar to other autoimmune diseases, IBD prevalence is rising rapidly in newly industrialized and developing countries. Research partnerships, comprising stakeholders from across the spectrum of chronic inflammatory disorders, should investigate and identify appropriate care models designed to deliver effective and impactful IBD care in resource-limited settings | A + SA = 97.1% | A | 1 |
A = 80.2% SA = 16.9% SD = 1.4% D = 0.5% NQ = 1.0% | ||||
6.5 | Steps should be taken to ensure the inclusion of historically neglected populations in AI models to avoid exacerbating existing health inequities. Moreover, steps should be taken to minimize the environmental impact of AI technologies | A + SA = 85.0% | B | – |
A = 57.5% SA = 27.5% SD = 2.9% D = 1.9% NQ = 10.2% | ||||
6.6 | Under-representation of disadvantaged groups in research can further entrench disparities in health-care and health outcomes in IBD. Research leadership should therefore include patient organizations and advocacy groups as key stakeholders to promote meaningful and context-driven diversity in research participation | A + SA = 92.8% | A | 2 |
A = 71.5% SA = 21.3% SD = 2.4% D = 1.4% NQ = 3.4% | ||||
