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Cultural Competency in IBD Care for SA Patients
How Cultural Competency Can Advance High-Quality Care for IBD Patients of South Asian Background

Released: July 14, 2023

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Key Takeaways
  • Patients of the South Asian diaspora may be averse to potential adverse effects of various approved medications used in the treatment of inflammatory bowel disease (IBD).
  • South Asian culture–specific stigma affects every part of the IBD journey, including decision-making around surgical and medication options.
  • South Asian families may prefer dietary therapies and CAM over medication or surgery, believing that diet is a main causative factor in IBD development.

South Asian IBD Alliance hosted its inaugural symposium focused on cultural competence in inflammatory bowel disease (IBD) care at Digestive Disease Week in Chicago, Illinois, in May 2023. As rates of IBD rise in various racial and ethnic communities,1,2 this event reflected a critical need for culturally competent medical education.

Each presentation within the symposium spotlighted unique facets of South Asian (SA) culture and barriers and considerations that affect patient care and outcomes. The following takeaways from this event reflect how cultural competency can advance high-quality care for patients of SA background with IBD.

Patient Perspectives

Culture-Specific Stigma
Culture-specific stigma affects every part of the disease journey. Taboos about bowel symptoms in SA communities may prevent patients from opening up about concerning symptoms, contributing to delays in seeking care and receiving a diagnosis.1,3,4 Once diagnosed, treatment decisions may also be fueled by SA cultural attitudes toward Western medication. Misconceptions about the pathogenesis of IBD and “dangerous” adverse effects garner poor trust in allopathic treatments, especially clinical trials and surgery.1,3,5 Conversely, there is high trust in complementary and alternative medicine (CAM) treatments with historical and traditional value such as Ayurveda. SA families often prioritize trying CAM over allopathic options.1,3,4 A core aspect of SA patient care is further illuminated within the shared decision-making paradigm, with SA patients heavily involving their families. Thus, truly effective health literacy must go beyond the patient and involve family education.

Use of Dietary Therapies Before Medication or Surgery
Many SA families prefer the use of dietary therapies over medication or surgery, believing that diet is a main causative factor in IBD development.1,3,4 Neha Shah, registered dietitian, highlighted the results from a cross-sectional study in SA patients with IBD in the UK that found 51% of respondents believed diet was an initiating factor to IBD, and 63% believed diet served as a trigger for relapse.6 Crooks and colleagues also found that approximately 90% adopted food restrictions to reduce the risk of relapse of IBD. A lack of culture-specific IBD nutritional counseling and resources can lead to unnecessary food restriction, which can be detrimental to quality of life; therefore, it is important to consider a personalized approach to nutrition.

What Will People Think? Or Log Kya Kahenge?
A final crucial consideration in SA IBD care from the patient’s perspective is the effect of the “log kya kahenge?” or “what will people think?” factor discussed by patient advocate, Madhura Balasubramaniam. In prioritizing material indicators of success, including marriage, parenthood, and higher education, many SA patients with IBD are faced with the inability to achieve it all. This can lead to ostracization and microaggressions toward patients, which can take a heavy psychological toll.1,4 These specific psychosocial issues may prevent diagnosis and acceptance of a diagnosis, ultimately affecting outcomes and quality of life.

A Gastroenterologist’s Perspective

The current treatment paradigm for IBD in patients living in North America was presented by Parakkal Deepak, MD, and involves delivering the right intervention, whether medical or surgical, to the right patient based on treatment targets. Patients of the South Asian diaspora may be averse to potential adverse effects of various medications used in the treatment of IBD. Today, physicians and patients can choose anti-TNF, anti-integrin, and anti-interleukin therapies, as well as S1P agonists and JAK inhibitors based on safety profile, route of administration, involvement of extraintestinal manifestations, and so on. Treat-to-target involves selecting the appropriate agent based on the risk profile of the patient and monitoring dynamically. This means symptomatic response in the immediate phase; normalization of inflammatory markers in the medium term; and reduction of hospitalizations and the need for surgery and prevention of disability over the long term.

Surgery may be an appropriate initial treatment for certain groups of patients such as patients with limited ileocecal Crohn disease. The LIR!C trial results also supported the concept of offering limited resection for those with ileocecal Crohn disease rather than subjecting them to anti-TNF therapy.7 When treating patients of SA origin, physicians must consider their cultural background in treatment decisions rather than simply using “step-up” (starting therapy with oral drugs) or “top-down” (starting with more potent medications such as biologics and immunomodulators) therapy. This is important when discussing stoma options if the patient needs surgery for IBD.

Often people of South Asian origin, whether living on the mainland or diaspora, have some mistrust of modern medicine. This, coupled with their belief in CAM (Ayurveda, homeopathy, and naturopathy), can pose some challenges in treatment decisions. Involving immediate family members in treatment decisions may help. There is significant disparity in clinical trial participation when it comes to South Asian patients compared with other populations, and patient advocacy can help to change this.

IBD, once thought to be very rare or nonexistent in India, has seen a significant increase in incidence during the past 2 decades.8,9 In his presentation, Sumit Bhatia, MBBS, MD, a gastroenterologist practicing in India, described how IBD incidence is highest in India compared with other Asian countries and the disease burden in India is second to that in the United States. Physicians treating patients in India with IBD face some unique challenges. The high prevalence of infectious diseases, especially tuberculosis (TB), continues to pose a diagnostic dilemma.3 Gastrointestinal TB shares several similarities in clinical, endoscopic, and histologic features with Crohn disease. For example, microbiologic tests (eg, culture of Mycobacterium tuberculosis, presence of acid-fast bacilli and/or necrotizing granuloma in histology specimens) used to diagnose gastrointestinal TB have poor sensitivity and specificity. Despite its high incidence, awareness of IBD is still very poor among patients and physicians. Mistrust in modern medicine coupled with heavy promotion of CAM lead to delays in diagnosis and a lack of treatment compliance.

Rural populations in India still lack access to various diagnostic procedures, especially colonoscopy. Insurance coverage is not uniform in India and most companies refuse to cover medication cost and infusion services. Most of the IBD medications, especially biologics, prove to be very expensive for the average Indian if they must pay from their own pocket. In this cost-sensitive market, optimizing the use of mesalamine and thiopurines after NUDT15 screening still proves to be a good strategy. Use of advanced therapies can be limited to patients with high-risk features. Reactivation of latent TB can be minimized by following stringent pretreatment protocols. De-escalation should be practiced wherever possible. Use of biosimilars has been shown to be as effective as the original molecules and can be cost effective. Tofacitinib is available in generic form in India and proving to be a very cost-effective method after screening for latent TB. Recent availability of the recombinant herpes zoster vaccine makes it safer to use for suitable patients. The newer drugs such as anti–IL-23 inhibitors, upadacitinib, and ozanimod are eagerly awaited.

Final Thoughts?
Which of the beliefs of your SA patients do you encounter most often when considering culturally appropriate IBD care? Join the conversation by answering the polling question and leaving a comment.

References

  1. Aswani-Omprakash T, Sharma V, Bishu S, et al. Addressing unmet needs from a new frontier of IBD: the South Asian IBD Alliance. Lancet Gastroenterol Hepatol 2021;6:884-885.
  2. Ahmed S, Newton PD, Ojo O, et al. Experiences of ethnic minority patients who are living with a primary chronic bowel condition: a systematic scoping review with narrative synthesis. BMC Gastroenterol. 2021;21:322.
  3. Balasubramaniam M, Nandi N, Aswani-Omprakash T, et al. Identifying care challenges as opportunities for research and education in inflammatory bowel disease in South Asia. Gastroenterology. 2022;163:1145-1150.
  4. Mukherjee S, Beresford B, Atkin K, et al. The need for culturally competent care within gastroenterology services: evidence from research with adults of South Asian origin living with inflammatory bowel disease. J Crohns Colitis. 2021;15:14-23.
  5. Banerjee R, Pal P, Tevethia HV, et al. Sa517 High prevalence of complementary and alternative medicine (CAM) use in Indian IBD patients irrespective of educational and socioeconomic status: it’s the perception of safety that matters! Gastroenterology 2021;160:S-532-S-533.
  6. Crooks B, Misra R, Arebi N, et al. The dietary practices and beliefs of British South Asian people living with inflammatory bowel disease: a multicenter study from the United Kingdom. Intest Res. 2022;20:53-63.
  7. Stevens TW, Haasnoot ML, D'Haens GR, et al; LIR!C study group. Laparoscopic ileocaecal resection versus infliximab for terminal ileitis in Crohn's disease: retrospective long-term follow-up of the LIR!C trial. Lancet Gastroenterol Hepatol. 2020;5:900-907.
  8. Kedia S, Ahuja V. Epidemiology of inflammatory bowel disease in India: the great shift east. Inflamm Intest Dis. 2017;2:102-115.
  9. Abhirami NR, Laksmi VV, Deepitha AM. A review on prevalence of inflammatory bowel disease in India. J Drug Delivery Therapeutics.2022;12:219-23.
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In your practice, which of the cultural beliefs of your SA patients do you encounter most often when providing culturally appropriate care?

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