Patients’ Journey Through Inflammatory Bowel Disease (IBD): A Qualitative Study

Tina Aswani Omprakash, Norelle Reilly, Jan Bhagwakar, Jeanette Carrell, Kristina Woodburn, Abby Breyer, Frances Close, Gabriel Wong, PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY, Inflammatory Bowel Diseases, Volume 27, Issue Supplement_1, January 2021, Pages S53–S54, https://doi.org/10.1093/ibd/izaa347.127

**Abstract originally published in the Crohn’s & Colitis Foundation’s journal Inflammatory Bowel Diseases on January 21st, 2021 and presented at Crohn’s & Colitis Congress. Research study sponsored by Genentech & led by patient advocate Tina Aswani Omprakash of Icahn School of Medicine at Mount Sinai**

I’m proud to announce the first patient advocate led study in the IBD space! Please view the above downloadable poster and link to the abstract for the results of this important qualitative research study that Genentech, Azul Seven and I collaborated on to better understand unmet patient needs in the IBD community around the U.S.

Upon recruiting and interviewing 32 very diverse study participants, we were able to identify five main journeys that each patient related with as their way of managing and coping with this disease. In summary, these journeys were described by study participants with real-life quotations:

• Journey of Independence:  “I need to make sure I’m really sick before I will go to the ER. It needs to feel like I’m going to die.”
• Journey of Acceptance:  “I just want to be well so bad. I want to take advantage of my good days. But my body says no.”
• Journey of Recognition: “My feel good is probably someone else’s not-good day. You learn to cope and adapt.”
• Journey of Passion: “I’m a firm believer all the work I’m doing now will one day be used to find a cure.”
• Journey of Determination: “People ask ‘why do you push so hard?’ And, some of it’s like well, I’m gonna be sick either way.”

There have been multiple journeys identified above. Over time, some patients may begin to approach their IBD differently, and their journey classification may change. It’s important to monitor and understand the patient’s individual journey at different points in time. Doing so will lead to a greater understanding of their goals for treatment and in life, in general. This will, in turn, lead to better shared decision-making to provide the most robust care to improve quality of life and prevent disability.

From our interviews and qualitative assessments, many different unmet needs were identified based on journey type. There were five main conclusions that rose to the top in all of the journeys examined:

• Increased education and training for pediatric, primary care and emergency physicians to improve and shorten the path to diagnosis.
• Mental health support is a critical gap and early intervention is essential to long-term wellness.
• Technology (e.g., telehealth) could be leveraged to build stronger patient-provider connections, share critical information and improve access to care.
• Patients need emotional support and a deeper understanding of the impact biologics and surgery will have on their life before committing to these treatments.
• Price transparency and broader promotion of drug assistance programs would dispel common myths about affordability and access for patients who are hesitant to try a biologic.

The purpose of this study was to not only identify these unmet needs but to make recommendations to IBD centers and the healthcare industry about how to be more patient-centric in their approach. By analyzing and understanding IBD patient journeys, IBD specialists, psychologists and dietitians can work together on approaching the patient in ways that are supportive to them, keeping in mind each patient’s primary goals for treatment and life, in general. By focusing on the above conclusions, industry and patient advocacy groups can work with healthcare providers to ensure that these needs are better met to ensure long-term physical and emotional well-being.

As always, sharing is caring. Please feel free to share this study so we can help get the word out about meeting patient needs in more tangible ways. Thank you for your readership!