Back Back
South Asians With IBD: Q&A
Optimizing Care for South Asians With IBD: Q&A From a Patient and HCP Panel Discussion

Released: July 24, 2023

Tauseef Ali
Tauseef Ali, MD, FACG, AGAF
Sabina Ali
Sabina Ali, MD
Tina Aswani-Omprakash
Tina Aswani-Omprakash, MPH
Madhura Balasubramaniam
Madhura Balasubramaniam, MA
Sumit Bhatia
Sumit Bhatia, MBBS, MD, DM
Parakkal Deepak
Parakkal Deepak, MBBS, MS, FACG 
Neha D. Shah
Neha D. Shah, MPH, RD, CNSC, CHES
Activity Information

Activity

Progress
1
Course Completed
Continue
Key Takeaways
  • Healthcare professionals should be open with patients in discussions about quality of life, especially concerning lifelong medication and surgery options.
  • Resources are available for both patients and healthcare professionals to improve overall quality of life for those with IBD.

Experts and patient advocates answer questions asked at an in-person symposium titled, “Breaking Borders: Optimizing Care for South Asians With IBD in the Mainland and Beyond,” about the challenges and cultural barriers to inflammatory bowel disease (IBD) care confronted by South Asian patients with IBD worldwide.

STRIDE-II updated its treat-to-target strategy recommendations for ulcerative colitis (UC) and Crohn disease in late 2020. What recommendations do you have for achieving STRIDE-II targets among South Asian patients?

Sumit Bhatia, MD, DM:
In India, we often struggle with the first target—clinical response—which is typically achieved using steroids or biologics. However, these are not practical options for most of our patients. Although we do offer biologics to patients who are good candidates and can afford it, using a step-up approach, most of our patients with UC receive monotherapy. In my practice, we are now incorporating responses such as mucosal healing as a target.

Parakkal Deepak, MBBS, MS, FACG:
As patients achieve STRIDE-II targets, ask patients if they have experienced an improvement in quality of life (QoL) through the achievement of the target. You might experience situations, for example, with second-line or third-line therapy, where you could dose escalate to achieve that higher target, but the patients want to stop because they are happy with where they are. Although that may not meet the approval of the STRIDE-II recommendations, it is a real-world approach to achieving these targets as a shared decision-making process.

When healthcare professionals (HCPs) ask patients about their QoL, what is the dialogue patients want to hear?

Madhura Balasubramaniam, MA:
From the patient/patient advocate perspective, ask me how I am doing rather than asking me about my symptoms, biomarkers, or what an endoscopy or MRI is showing. Ask me how I am doing; am I able to live the life that I want? HCPs could ask us about our treatment aspirations and how we want to get there. Hearing my doctor say, “You are young; you can do better than where you are at presently,” helped me to finally choose a biologic therapy. People with IBD often think that “this” is the best that they can get: living with restricted diets and needing the restroom every few hours. To know that we can do better and aspire to feel better, that is important to convey to patients.  

Tina Aswani-Omprakash, MPH:
Patients with IBD may not know that they can have an improved QoL. Sometimes, we need HCPs to tell us that we are missing out on life. When we get drowned out by “log kya kahenge” (what will people say) rhetoric—or that we should be taking complementary or alternative therapies (CAMs) because it is believed that biologics are going to give us all adverse effects—we do not know how to navigate that belief against what reality is. However, if a physician asks us, “Are you able to go to school? Are you able to go to work? Are you able to go several hours without needing the bathroom or having urgency?” All these questions can make us realize that we do deserve a better life and that perhaps it is in our best interest to move forward with the medication or surgery suggested. It is thus important to have culturally competent conversations and ask these much-needed questions.

Tauseef Ali, MD, FACG, AGAF:
For my colleagues practicing in the West and taking care of South Asian patients, the competency of the patient to understand every medical term and decision-making may not be optimal. My advice, even for patients of other ethnicities, is to bring the family in for the decision-making but do not use them to translate your conversation and recommendations. This is because they might omit or rephrase the message you are trying to convey out of respect for the patient. Therefore, use a neutral translator who can accurately share your message. In addition, after traveling to Pakistan and caring for patients there, I learned that undergoing colonoscopy could be challenging for some because of their faith. Patients may feel like it is a violation and will not agree to have it done, so you will have to rely on biomarkers and other things for monitoring treatment response. Application of treat-to-target concepts and exploring QoL sometimes become very challenging in these patients.

How do you address CAMs with patients? How do you approach patients if CAMs are a barrier to adopting an advanced therapy?

Sabina Ali, MD:
As a pediatric gastroenterologist, CAMs and diet therapies frequently come up in discussions. Parents are often worried about putting their child on a lifelong medication, so they may seek a diet therapy and/or CAMs. I approach this discussion by explaining to parents that I measure the child’s growth and that diet can be plan A for a specified time, such as 3 months, and at which time we will evaluate the child’s growth. During the same discussion and using shared decision-making, we also make a plan B so that it is ready to implement at 3 months, if needed.

Sumit Bhatia, MD, DM:
When patients realize that they must take lifelong medications, they may not be ready to accept their diagnosis. We offer very expensive treatment for IBD with an approximately 40% to 50% chance of success, accompanied by significant adverse effects. Patients, then, may see an alternative medicine practitioner who offers a cheap “cure” with no adverse effects. The choice appears simple for patients and their families: Patients take the route that offers them hope and a “cure.” Most come back once they realize the “cure” is not working for them. It is still important for HCPs to offer medications and then let the patients decide.

Parakkal Deepak, MBBS, MS, FACG:
I think the key for HCPs is to continue to work with patients and their families and to stay on message while acknowledging that patients may have different beliefs. Meet halfway, negotiate, and with time they may come around.

Where can individuals find guidance on how to incorporate South Asian dietary tips?

Neha D. Shah, MPH, RD, CNSC, CHES:
Today, many gastrointestinal HCPs have IBD-specialized dietitians in the office who can help, but if not, the HCP can refer the patient to a dietitian who can help with including foods. If patients do not have access to a dietitian, a clinic visit can include nutrition education—including written information—that goes beyond a list of foods. It is important for South Asian patients and their families to speak up when their food culture is not being addressed and to say that “we eat differently.” Encourage patients to share ingredients with the HCP and to ask for help on how or if they can be included in their diet again.

What advice can you share for HCPs counseling patients who need an ostomy?

Tina Aswani-Omprakash, MPH:
Many patients feel like they cannot bring up cultural considerations because their HCP will not understand. I would ask surgeons and gastroenterologists to talk with patients and tell them and their families that ostomy is a life-saving measure that also improves QoL. We need more open dialogue including the nitty-gritty details of how ostomy is going to improve QoL, including that patients can live their lives again without needing to rush to the bathroom in pain and that they can work, go to school, play sports, swim, and be in relationships.

Sumit Bhatia, MD, DM:
I find that it is also helpful for patients to talk to others who are willing to share their experience, especially for those of a similar age, sex, or culture, so patients can understand the other person’s journey. These patient–patient interactions can be facilitated by support groups that have volunteers who are willing to talk about their experiences.

How can HCPs increase clinical trial enrollment for South Asian patients and other racial and ethnic groups who are not adequately represented?

Sumit Bhatia, MD, DM:
I always have a hard time discussing clinical trials with South Asian and other patient populations. The word “research” can be very scary to them, so I try to avoid it. Get creative in how you describe clinical trials and their benefits. Participating in clinical trials gives patients a chance to try treatments that they otherwise could not afford.

Parakkal Deepak, MBBS, MS, FACG:
I think it is easier if the treating gastroenterologist presents the clinical trial opportunity while the patient is in clinic—I find it leads to better recruitment rates than having the discussion in a follow-up phone call. In addition, I think recruiting for phase III studies is easier than phase II because you can discuss the earlier results and any adverse events. HCPs should know the protocol and trial designs and whether or not patients receiving placebo who have a flare can get into the open-label arm. Make patients aware of the opportunities, including the inclusion and exclusion criteria and the fact that if they try that one last medication, it might make them ineligible for any trial opportunities later. Ask patients what they feel is preventing them from using the opportunity to join a trial.

Madhura Balasubramaniam, MA:
One thing that is scary to me as a patient is clinical trials. Perhaps the discussion about clinical trials should be an early and ongoing conversation. Otherwise, the clinical trial feels like a last-resort option. Also, talk about QoL. I think the biggest fear for many South Asian patients who are considering a clinical trial is the fear of adverse effects and being experimented upon. HCPs should emphasize that what is at stake is not merely improvements in biomarkers but improvement in the patient’s overall QoL. I think that conversation needs to be ongoing as well.

Your Thoughts?
In your practice, which aspects of IBD care are your patients with IBD most interested in? Join the conversation by posting your answer in the discussion section below.

Continue

Poll

1.

In your practice, which aspects of IBD care are your patients with IBD most interested in?

Submit