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IBD in South Asian Patients
Turning the Tide for South Asian IBD: Influences and Implications for Culturally Competent IBD Care

Released: March 28, 2023

Sabina Ali
Sabina Ali, MD
Madhura Balasubramaniam
Madhura Balasubramaniam, MA
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Key Takeaways
  • Inflammatory bowel disease (IBD), a chronic, relapsing inflammatory condition of the gastrointestinal tract, is increasingly prevalent in South Asia.
  • Unique challenges in IBD management for South Asian patients include scarcity of IBD specialists, the high cost of IBD care in South Asia, and cultural barriers for South Asian patients.
  • Learn from the experts about clinical strategies for treating South Asian patients with IBD. Join the South Asian IBD Alliance at a satellite symposium during Digestive Disease Week 2023 in Chicago, Illinois. Register here.

Inflammatory bowel disease (IBD) is a chronic, relapsing inflammatory condition of the gastrointestinal tract that encompasses both Crohn’s disease (CD) and ulcerative colitis (UC). South Asia includes 8 countries (Afghanistan, Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, and Sri Lanka) and is home to more than 1.9 billion people. In addition, there is a vast global South Asian diaspora, with an estimated 5.4 million South Asians living in the United States alone. Growing rates of IBD among South Asians create unique challenges for diagnosis, management, and healthcare utilization that ultimately affect the delivery of timely, quality care. We highlight the incidence, prevalence, disease presentation, and unique phenotypic differences to suggest that the efficacy of immunotherapy in South Asian IBD requires further investigation. In this commentary, we highlight the need for developing culturally competent care in managing the impact of stigma and complex sociocultural barriers when delivering healthcare to this underserved community.

Under-recognition of IBD Among South Asians
IBD has been increasingly identified in populations in the Western world. More recently, there has been a broader geographic distribution, with IBD emerging in populations previously considered low risk. The first population study conducted in India in the 1990s reported that adult UC prevalence was 44.3 cases per 100,000, similar to prevalence rates in North America and Europe. A study mapping the epidemiology of IBD in India projected that in 2010, India had approximately 1.4 million individuals with IBD, second only to the United States. The authors argued that given the surging incidence of IBD in India, there was a “Great Shift East” of IBD.

A small single-center study in England suggests that there is a greater frequency of IBD in South Asian patients who subsequently migrate to the United Kingdom. In addition, Pinsk and colleagues reported a significantly higher incidence of IBD in the South Asian pediatric population compared with the rest of the pediatric population in British Columbia, Canada, with a different pattern of phenotypic expression, a male predominance, and more extensive colonic disease.

Unique Challenges in IBD Management in South Asians
The growing incidence and prevalence of South Asian IBD make it vital to understand and alleviate the specific hurdles to adopting effective IBD management strategies for this community. These challenges include the scarcity of IBD specialists, the high cost of IBD care in South Asia, and the lack of culturally competent care that serves the needs of South Asian patients in countries such as the United States. Among these challenges, cultural barriers to IBD care are enormous and affect South Asian patients with IBD worldwide.

Cultural Barriers to IBD Care for South Asians
The prevalent misconception within the South Asian community is that patients with IBD have brought the condition upon themselves through their “poor diet or lifestyle choices” or even through mistakes committed in a past life (karma). Common IBD symptoms, such as bloody diarrhea and fecal incontinence, are taboo topics not meant to be discussed with others. As a result, IBD remains hugely stigmatized. This stigma is more acute for South Asian patients with ostomies, who are mistreated and ostracized by the community.

Besides low awareness about IBD, there is widespread distrust in modern medications, which are thought to have several “dangerous side effects.” This fear is accompanied by the community’s faith in complementary and alternative therapies—such as Ayurveda, homeopathy, and naturopathy—that promise a “cure” for IBD with “no side effects.” Many patients thus explore complementary and alternative therapies as a primary treatment modality, often resulting in delayed start of evidence-based IBD therapies and poor IBD outcomes.

For many patients with IBD, acceptance and adherence is an uphill battle, and they may feel forced to confront their own families to access IBD care. Patients often carry a massive psychosocial burden and suffer in silence due to the fear of intense judgment and blame from the community for their condition.

Impact on Approaches to Healthcare Delivery
These cultural factors directly contribute to delays in care. Patients are unable to proactively seek care, adopt effective IBD therapies, or accept IBD surgery promptly. Many patients experience debilitating complications because of the disease, have a poor quality of life, and cannot pursue professional and personal aspirations.

However, these specific sociocultural concerns often are hidden from the view of healthcare professionals (HCPs) and remain outside patient‒HCP discussions on the delivery of IBD care. Any attempt to elevate IBD care in the South Asian community must be cognizant of and address the unique cultural needs of the South Asian IBD community.

Equally, we must be attentive to how IBD manifests in this distinct population to create better management strategies.

Characteristic Phenotypes
There are very few phenotypic studies in South Asian patients with IBD living in the United States. Jangi and colleagues found that South Asian patients often received their CD diagnosis at an older age, most between 17-40 years of age. South Asian patients with CD more commonly presented with penetrating disease and perianal disease. Similarly, a Canadian study by Carol and colleagues reported higher rates of penetrating disease behavior among South Asian children with CD and noted that South Asian children with UC had more extensive colonic disease.

Therefore, it is imperative to study the unique pharmacogenomic efficacy of IBD medication in South Asian IBD cohorts to identify future therapeutic targets with greater efficacy. However, most clinical trials for IBD medications have recruited predominantly White patients, resulting in significant underrepresentation of minorities such as South Asians in clinical trials and drug development.

Need to Provide Optimal Care for South Asians With IBD
With the dramatic increase in South Asian IBD, the need to change the landscape of South Asian IBD care has never been more urgent. As the South Asian IBD Alliance has emphasized in research commentaries, there are opportunities to undertake targeted initiatives in clinical practice, research, and patient advocacy. These practices will enable us to improve South Asian community awareness to destigmatize IBD, strengthen professional education, and integrate cultural competency training for HCPs in their practices. Likewise, we can help develop research to understand South Asian IBD pathogenesis better and diversify clinical trial recruitment to develop novel treatments that are uniquely targeted for South Asian IBD. These initiatives will serve to optimize care for South Asian patients with IBD and empower every patient to lead a fuller life free from the burden of IBD.

We invite you to join the South Asian IBD Alliance on May 6 in Chicago, Illinois, for our symposium titled, “Breaking Borders: Optimizing Care for South Asians With IBD in the Mainland and Beyond” for a closer look at the challenges and strategies we face in managing IBD in South Asian patients. To register to attend this event in person or for the simulcast, click here.

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