Global Inflammatory Bowel Disease: Opportunities and Challenges for a New Era

ABSTRACT

Inflammatory Bowel Disease (IBD) has become a global disease. The increasing incidence of inflammatory bowel disease across the world is challenging the traditional view of IBD as a western disease and represents a unique opportunity to gain an understanding of the disease in diverse ethnic groups and in different socio‐economical and geographical environments. However, the continued growth in prevalence in developing countries in the coming years will lead to increased use of health‐care resources due to IBD‐related complications, costs of drugs and indirect health costs. Here we analyze the challenges and opportunities that this situation represents and suggest actions and potential solutions to improve the quality of IBD care globally.

1. Introduction

Inflammatory Bowel Disease (IBD) has truly become a global disease. The increasing incidence of IBD across the world is challenging the traditional view of IBD as a western disease and should be a trigger to promote trans‐national collaboration [1, 2].

The rise of IBD cases in developing countries represents a unique opportunity to gain an understanding of the early stages of the disease in diverse ethnic groups and in different socio‐economical and geographical environments. Furthermore, it could provide vital insights into disease aetiopathogenesis, including the identification of factors triggering the onset of disease or altering disease progression [3].

Importantly, some Low and Lower‐Middle Income Countries (LLMICs) with growing incidence of IBD and large populations (like Brazil, India or China) might soon struggle to deliver high quality care to IBD patients due to their socio‐economic context [4].

The continued growth in prevalence in developing countries in the coming years will lead to increased use of health‐care resources due to IBD‐related complications, costs of drugs and indirect health costs. Thus, the specific burden of IBD must be studied locally taking into account cultural and economic differences. Notably, management strategies that reduce costs such as early diagnostic pathways, work in multidisciplinary teams, or the early use of advance therapies (like biosimilars) must be tested and implemented in LLMICs [5, 6].

These unprecedented circumstances should prompt a global collaborative effort. Trans‐national, well‐coordinated cooperative actions should be implemented to avoid worsening the existing inequalities in health‐care access across the world. Therefore, ensuring access to equitable and sustainable high‐quality IBD care across the world should be a priority in the years to come [7].

2. The Global Burden of IBD

The stabilization of the incidence in Western countries contrasts with the rapid rise of new IBD cases in newly industrialized countries in Asia, the Middle East, South America, Eastern Europe and Africa, where more than 10 million new IBD cases are predicted by 2050 [8, 9].

Asia has experienced a dramatic increase in the number of IBD patients in recent years. The highest incidence has been reported from East and South Asian countries such as China, Japan, South Korea, and India, where the total number of patients with IBD doubled from 0.13 million to 0.27 million between 1990 and 2019 [10]. Similarly, the incidence of IBD has been steadily increasing in Latin America and the Caribbean, from 28.1 IBD cases in 1990 to 33.7 cases per 100,000 people in 2017 [11]. Countries like Brazil and Argentina have the highest prevalence of IBD, reaching recently similar rates as many countries in Asia and Eastern Europe [12, 13].

An increasing number of reports from Africa also suggest an increase in the incidence of IBD cases, although little is known outside North African countries and South Africa [14]. Although IBD has long been considered uncommon in sub‐Saharan Africa, there is some evidence that the incidence of IBD is also rising, with predominance of UC cases [15, 16].

Recent data from the Global Burden of Disease (GBD) 2019 database evaluating 204 countries confirm this trend. There were approximately 4.9 million cases of IBD worldwide (corresponding to an increase of 47.5% between 1990 and 2019), with China and the United States having the highest number of cases [4]. It is important to note that an increasing incidence of IBD has been reported in the United States, where the incidence rates for whites and nonwhites increased by 39% and 134%, respectively, in recent decades [17]. Furthermore, important disparities in IBD care based on race, ethnicity, gender, and socioeconomical status (worse clinical outcomes, less access to specialists, more frequent use of emergency services, and less social and emotional support) have been communicated [18]. The disparities that exist in western countries despite high dedicated health budgets are likely to be amplified in LLMCs, where socioeconomic difficulties and challenges can magnify these inequalities.

The adoption of a Western lifestyle, including changes in dietary patterns, increasing urbanization and industrialization, sanitization and the introduction of intensive agriculture/farming have been pointed out as the driving factors for the global rise of IBD [8, 19].

In contrast, the increase in IBD incidence seems to have plateaued in Western countries [1]. Despite this, the prevalence of IBD will continue to rise in the West as IBD is diagnosed in young individuals and is a chronic condition with low mortality (compounding prevalence), and also because an increase in newly diagnosed IBD in the elderly has been reported [2, 20]. This will lead to an increasing number of senior IBD patients, posing a challenge for doctors dealing with IBD due to the presence of age‐related co‐morbidities, polypharmacy and a potential increase in drug‐related adverse events.

A systematic characterization of the similarities and differences in IBD globally that encompasses environmental factors, phenotypical features, disease biology, and response to therapies is crucial to plan ahead. Pioneer initiatives such as the European Crohn's Colitis organization (ECCO) Consensus to gather information on challenges and gaps in knowledge in LLMICs are a first step in that direction. Other efforts to characterize the global IBD epidemiology, such as the Global IBD Visualization of Epidemiology Studies in the 21st Century (GIVES‐21) [21], the ENIGMA initiative [22], or novel IBD registries in sub‐Saharan Africa [23], are underway.

Complementing this, a promising alternative is to expand existing multi‐national registries and consortia globally. Although the implementation of such global research platforms is challenging, it may lead to key scientific discoveries and novel global research networks while raising awareness of the disease.

Recently, the CARE model consisting of four areas of action: collaboration, advocacy, research, and education has been proposed to address health inequalities and ensure equity and quality of care in IBD in developing countries [7]. Here, we aim to identify and discuss opportunities and challenges and provide ideas for future collaborative efforts (Figure 1).

FIGURE 1.

World map representing the different stages in IBD epidemiology [1, 45, 46].

3. Collaboration

Initiating international collaborations to define and address the burden of IBD in developing countries is likely to yield high rewards. We need to harmonize and navigate effectively the regulatory challenges in different countries to build these projects (biological material transfer, travel issues with visiting scientists, and data safety). These collaborations should be inclusive and avoid “helicopter research” as was practiced in the past, where researchers from high income areas conduct studies in LLMICs with limited involvement of local researchers and communities in the absence of a long‐term fair collaborative plan. To sustain effective collaborations, we need to acknowledge some current challenges:

3.1. Challenges in Collaboration

• Problems in health‐care infrastructure and equipment are an important issue in many LLMICs. Currently, there are insufficient high‐quality facilities in key areas for the management of IBD such as endoscopy, radiology, or pathology [8].

• The cost of advanced IBD therapies remains high in newly industrialized countries, with highly variable access across the world due to prizing structures and regulatory pressures [24, 25]. In addition, the high prevalence of infections (like tuberculosis) may limit the widespread use of these advanced therapies in developing areas [5]. The pharmaceutical industry can play an important role in promoting equity in these countries.

• Modern IBD care requires continuous assessment of drug response with clear goals (treat‐to target) and early diagnosis of flares [26]. However, current available monitoring tools are often expensive and time‐consuming, challenging the adoption of this strategy in some areas [27]. Also, many GI units struggle to create truly multidisciplinary IBD teams because of financial constraints and lack of local expertise.

• IBD is often diagnosed late in areas where the prevalence was low, which might increase complications worsening the course of the disease [28, 29].

• Importantly, it is crucial to address the substantial rate of misdiagnosis and diagnostic delays due to the high prevalence of gastrointestinal infections in several areas of increasing incidence [5, 8].

3.2. Opportunities for Collaboration

An effort to promote effective international collaboration crossing borders and continents is necessary to advance equity in IBD care. This should focus on specific areas:

• Implementation of registries of IBD patients is key to characterize the burden of the disease and obtaining standardized data. Western teams with experience in these registries can be instrumental in their co‐creation.

• Western professional organizations (ECCO, UEG, AGA etc.,) with interest in IBD should promote global initiatives and coordinate trans‐national collaboration (educational activities, grants, visiting fellowships etc.,). Cross pollination of the best ideas will undoubtedly yield positive outputs.

• Western health care professionals with expertise in IBD should be encouraged to share their knowledge with hospitals in developing countries. Collaboration in the elaboration of local guidelines to standardize treatment and follow‐up should be prioritized.

• Experienced teams from Western areas with high prevalence must provide guidance for the creation of certified IBD units and teams that integrate specialized nurses, dieticians and psychologists in areas in need. Importantly, the introduction of point‐of care monitoring and inexpensive image techniques such as intestinal ultrasound must be encouraged [27].

• Opportunity to take advantage of new global digital platforms and social media to break geographical barriers and foster collaboration.

4. Advocacy

4.1. Challenges in Advocacy

• IBD is an emerging disease in countries where traditionally infectious diseases are dominant. This may lead to a reduced awareness of symptoms and diagnosis of IBD amongst healthcare providers and the general population [12].

• The burden of IBD advocacy in LLMICs cannot fall solely on patients but on the entire IBD community including several stakeholders (clinicians, GI and Medicine professional societies, patient's associations, hospital groups, and health organizations). Often, these efforts are not coordinated and lack a strategic plan to tackle the increasing incidence of IBD. Policy makers and health care authorities must be informed and convinced about the devastating impact of IBD on the quality of life and the associated direct and indirect costs.

4.2. Opportunities for Advocacy

• Educational programs about IBD should be implemented for the general public. To provide curated information about early signs and symptoms, the impact on quality of life and health‐related costs is crucial to raise awareness.

• The use of the different means of communication (such as television, radio, and social media) should be tailored locally to increase the effect of those campaigns.

• Opportunity to put patients in the center. The IBD community should actively promote the creation of patients' associations in every country and region. IBD patients should be involved in co‐creating services, guidelines and resources tailored to meet their needs. Patients' organizations must play a crucial role in raising awareness about IBD in the general population by educating about the disease symptoms and treatment through sharing their stories and available resources. Successful collaborations between patients' associations in Europe, such as the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), could pave the way forward in developing areas.

• Long‐term coordinated efforts for partnership and collaboration that include all IBD stakeholders should be encouraged. This common effort is key to promote educational activities and access to IBD specialists and advanced therapies, and to implement ad hoc policies to deal with the increasing burden of IBD.

• Sensitization of health care agencies to promote research on cost‐effective therapies and complementary therapeutic modalities (like specific diets, partial enteral nutrition, nutraceutics, fecal microbiota transplantation etc.,) is needed [30].

5. Research

5.1. Challenges in Research

• There is a lack of information about the real incidence of IBD in several areas like sub‐Saharan Africa or Oceania [15, 31]. Well‐designed epidemiological studies are needed to estimate the future burden of IBD and plan accordingly.

• There is also a knowledge gap in many areas of IBD in developing countries, including: environmental risk factors, the role of infections in the onset of disease and flares, phenotype distribution, and response to therapies with different mechanisms of action. It is key to understand the differences between areas and to identify potential disease triggers in order to improve our understanding of the pathophysiology of IBD.

• IBD patients from emerging areas are often underrepresented in clinical trials. Obstacles such as the lack of infrastructure and expertise for the development of clinical trials, poor health literacy and deficient information, and difficulties in the access and communication in rural areas have been pointed out [32]. These barriers should be identified and addressed at a local level.

• Basic and translational research in IBD is expensive and resource consuming and scarce economical resources are often dedicated to clinical activity as a priority in LLMICs.

• Young clinicians in LLMICs struggle to get dedicated time for research as well as a formal education to perform and interpret basic and translational science. Well‐structured research programs including grants and financial support for research, are lacking in many countries.

5.2. Opportunities for Research

• A unique opportunity to study the pathophysiology of IBD is in front of ours. A better understanding of the specific interplay between the environment, genes, microbiome and the immune response driving the dramatic increase in incidence in developing countries can lead to the discovery of novel therapeutic targets.

• Opportunity to characterize IBD in different geographical and sociocultural environments. For example, antibiotic use in childhood increases the risk of developing UC in the Western world but protects against it in some Asiatic populations [33]. Similarly, differences in disease location have also been reported in different regions. It has been recently shown that Asiatic patients have more often upper gastrointestinal involvement in CD [34], whereas South American CD patients present more often with a colonic phenotype (L2 Montreal) than Western patients [35]. A better understanding of these differences is key to understanding the causes and determinants leading to IBD.

• Several studies suggest a link between the adoption of a western diet and IBD [36]. Adopting a global perspective of IBD is critical to address how different diets modulate the gut microbiota and the immune response across regions. Several multi‐national collaborations are underway [22].

• Furthermore, we have a fantastic chance to study large populations of newly diagnosed IBD patients and their first‐degree relatives and to test early diagnostic strategies in pre‐clinical phases in the future [37]. Preventing the development of IBD in population at‐risk (correcting dysbiosis or innate immunity alterations in early phases, e.g.,) is an attractive possibility to slow down the sharp increase in incidence in these countries.

• Stimulate the participation of newly industrialized countries in multi‐national clinical trials. An increase in diversity and multi‐cultural representation in clinical trials should be encouraged for more robust and generalizable results. Genetical, environmental and immunological differences might make a big difference in clinical results and their interpretation [38]. It is crucial to coordinate efforts at all levels (patients, clinicians, researchers, and study coordinators as well as industry sponsors and health authorities) to achieve this [32]. These initiatives should advocate for increasing resources in under‐represented areas to improve essential areas of IBD care like: patient education and communication, local infrastructures, specific training in clinical research for physicians and nurses, promotion of clinical trials, and identification of cultural barriers to inclusion (like deficient health literacy). Mentorship programs that focus on all aspects of IBD research and the creation of national registries and local databases of IBD patients should be encouraged.

• Establish global research in IBD. The international IBD community should support the creation of multi‐national research platforms and consortia that promote networks of IBD researchers from around the globe. Initiatives like the ECCO Consensus on IBD in low‐ and middle‐income countries will provide a better understanding of the local challenges to plan effective interventions. This will also allow testing and validation of several precision medicine tools (‐omics) and discovery of novel biomarkers in large populations of patients to provide more cost‐effective care.

• It is critical to improve funding and an appropriate infrastructure to perform cutting‐edge research in developing countries (animal facilities, specialized labs, state‐of‐the art technology etc.,). Strategic partnerships with professional international IBD organizations, local universities and Health agencies should be encouraged. Offering grants and opportunities for exchange programs between western countries and developing countries, mentorship by stablished western IBD researchers or on‐line education programs on research should be prioritized. Of note, trainees and young specialists should be encouraged to allocate time dedicated to clinical and translational research in the field of IBD.

6. Education

6.1. Challenges in Education

• Traditionally, training in IBD has not been a priority in LLMICs. Primary care physicians, internal medicine and infectious medicine specialists should be encouraged to increase their knowledge of the disease. This will translate into early diagnosis avoiding delays in treatment.

• Gastroenterologists and coloproctologists might experience difficulties in enrolling in specific IBD training in low prevalence areas [24]. Moreover, IBD conferences are expensive and difficult to afford for many gastroenterologists in low‐income countries. Excessive workload due to low budgets and lack of gastroenterologists specialized in IBD in remote rural areas might also be a challenge (Figure 2).

• Additionally, it might be difficult to stay up to date in IBD due to publication restrictions and lack of open access to relevant scientific literature in LLMICs.

• Nurses often lack access to specialization programs in IBD in some geographical areas. Nurses are an essential part of IBD Units and should be encouraged to participate in educational activities, like the ones promoted by the Nurse‐ECCO (N‐ECCO) group or initiated locally [39]. Similarly, dieticians and psychologists must be provided with adequate specific training in IBD. Furthermore, patient education is deficient and poorly structured in many LLMICs.

FIGURE 2.

CARE (collaboration, advocacy, research, education) strategy to address the challenges and opportunities of Global IBD.

6.2. Opportunities for Education

• Providing training opportunities in IBD should be a priority. It can include active exchange of clinical and research experiences, visiting fellowships, and specific mentoring programs.

• Education of young gastroenterologists with an interest in IBD is vital. The coming global burden of IBD will require enough highly specialized gastroenterologists. Access to tailored IBD training is urgently needed [7, 24]. Similarly, local coloproctologists must increase their expertise in IBD‐related surgery. Active participation in specific IBD‐related hands‐on training for surgeons (like ileocecal resection techniques, ileoanal pouch creation, perianal CD assessment, and management) should be encouraged.

• Push for more affordable gastroenterology/IBD conferences and increase the funding and number of grants to attend these activities. Universal open access to scientific literature is necessary.

• Increase and expand the use of already available free e‐learning resources on IBD (like ECCO and UEG e‐learning content) and promote the creation of locally initiated educational activities. Also, the use of novel digital tools and educational initiatives via social media should be considered [40].

• Patient education is a crucial aspect to improve outcomes in IBD [41, 42]. It is important to identify the right channels and methods to provide patient education and taylor these programs to the different local cultural and sociocenomical contexts [43]. Educational material needs to be adjusted to, not only reading literacy, but also health literacy. For example, printed material might not be the preferred method in areas with low reading proficiency, while short educational radio conversations or videos led by local clinicians and patients can have a great impact. Finally, an attempt to reach patients where they are both in person (schools, universities, place of worship etc.,) or on‐line (social media, dedicated websides etc.,) is mandatory.

In conclusion, the IBD community needs to acknowledge IBD as a global disease. The growing incidence of IBD in densely populated newly industrialized countries will increase the global burden of the disease, posing an important challenge for health‐care systems and areas with economic and social difficulties. Well‐established international organizations should take the lead and work together with these areas to ensure equity and a high‐quality standard of IBD care. Collective efforts such as the ECCO driven Quality of Care Project (E‐QUALY) will be key to define the situation of IBD management globally [44].

To achieve this, we must characterize the local particularities and challenges to co‐design effective tailored programs. Although this new scenario poses several challenges, we believe that we have in front of us a golden opportunity to advance in the knowledge of the disease, foster solidarity and collaboration across continents and improve the diversity and equity of IBD care globally.

Conflicts of Interest

Ignacio Catalan‐Serra: has received advisory fees from AbbVie, Takeda, Bristol‐Myers Squibb, Pfizer, Eli Lilly Janssen‐Cilag, and Tillotts Pharma; has received speaker fees from Janssen, Takeda, Tillotts Pharma, Ferring and Lilly; has served as principal investigator for AbbVie; and is the co‐founder of Young Global IBD (YOGI‐IBD) and Vice‐chair of the Norwegian IBD study group (NISG). Shaji Sebastian: has received consulting fees from Takeda, AbbVie, Merck, Ferring, Pharmacocosmos, Warner Chilcott, Janssen, Falk Pharma, Biohit, TriGenix, Celgene, and Tillots Pharma; payment or honoraria from AbbVie, Takeda, Celltrion, Pfizer, Biogen, AbbVie, Janssen, Merck, Warner Chilcott, Falk Pharma, and Janssen; is chair of the Research Committee of the British Society of Gastroenterology; is chair of the Clinical Research Committee of the European Colitis and Crohns Organisation; and is co‐director of research for the South Asian IBD Alliance.

Catalan‐Serra I, Sebastian S. Global Inflammatory Bowel Disease: Opportunities and Challenges for a New Era. United European Gastroenterol J. 2025;1410–1417. 10.1002/ueg2.70075

Data Availability Statement

Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.