Roundtable Convenes to Improve Outcomes for Young Adults With IBD

By Sandra Kim, MD

Over 3 million individuals live with inflammatory bowel diseases (IBD)—Crohn’s disease and ulcerative colitis—in the United State.² Worldwide, 20 to 25% are diagnosed before ages 16 to 18 years.² Patients living with pediatric-onset IBD bear a higher burden than those diagnosed in adulthood: more severe, extensive disease with increased progression to surgery and greater financial cost annually and over a lifetime due to their IBD.

As a pediatric gastroenterologist who has spent my entire career focusing clinical, research and advocacy work for children and young adults living with IBD, I have seen firsthand the unique issues impacting all aspect of these diseases: medical, nutritional, and psychosocial. It is especially important as pediatricians that we partner with our patients as they progress from the pediatric to adult healthcare systems to ensure they are prepared and supported in the process.

Creating a learning community for young adults living with IBD

The Crohn’s and Colitis Young Adult Network (CCYAN) was founded over a decade ago by two adolescents living with IBD with a commitment to ensuring “that no young adult would feel isolated in their journey” living with IBD.

Currently, through funding from organizations, including the Helmsley Foundation and guidance from a medical advisory board, for which I am a member, the CCYAN has been instrumental in funding different key programs to educate and advocate specifically for young adults living with IBD. This includes an annual international IBD fellowship, IBD medical scholars’ program and virtual community meetings.

Furthermore, the CCYAN created “The Roundtable on Young Adults with IBD.” This was a yearlong series of monthly discussions on critical topics impacting young adults living with IBD. Participants included patient advocates, researchers, and IBD-focused clinicians. Each session was organized to focus on a key topical area. In total, there were nine sessions throughout 2023-2024, including the following topics for young adults living with IBD:

• The emerging young adult patient
• Higher education, workplace, and financial challenges
• What adult gastroenterologists should know about young adults with IBD
• Peer-support
• Affirming care for LGBQT+ patients
• Reproductive and sexual health issues
• Clinical trials in IBD
• Medical trauma
• Men’s health issues

Addressing effective transition and transfer of care for young adults living with IBD

As defined by the Society for Adolescent Medicine, transitioning of care for young adults is a dynamic, planned, and purposeful process to ensure that there is effective preparation as these patients move towards independence.⁴

The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) stated in a position statement (2002) that “The goal of a transition program is to achieve for each chronically ill patient a continuum of care that includes normalization of social and emotional development and the acquisition of independent living skills.”

Transition is defined as the process of preparing emerging young adult patients, whereas transfer of care is the actual act of care transfer from pediatric to adult healthcare-based systems. Both aspects are complementary and essential for all young adults living with chronic illnesses like IBD.

Identifying factors that impact young adult readiness

In the inaugural roundtable outlined in this publication, we convened a group of key stakeholders selected for their respective roles as young adults living with IBD, caregivers and healthcare providers/researchers with expertise in young adult IBD care.

The primary discussion focused on the challenges encountered by young adult patients during the times of transitioning and ways this process could be improved. Key ideas include the importance of developmental milestones to gauge transition readiness for young adult patients living with IBD, and the importance of collaboration between pediatric and adult healthcare providers (primary care and specialists).

Considerations when assessing the transitioning process include recognizing transition readiness needs to also address overarching life transitions. Furthermore, caregivers of young adults living with IBD noted the need for additional resources/formal support processes to ensure that patients and their families were able to successfully navigate the different aspects of chronic illness care, including medical (understanding and gaining access to specialty medications), administrative (identifying new healthcare providers and making/managing appointments), and financial (insurance issues).

The group identified that specialized well-resourced transition programs are critical to facilitate and support the processes needed for adolescents and young adults living with IBD. This is also reflected in the literature. Currently, only a small number of programs have these designated programs and clinics.^5,6

Defining keys areas for research

The social determinants of health are the nonmedical categories that affect health outcomes.⁷ The three social determinants in our roundtable discussion were health outcomes, equity of treatment and fostering care.

As noted in the discussions, patients in lower socioeconomic status or in certain underserved patient demographics will not have the same resources of patients who receive care in well-established IBD centers. Thus, it is critical to address issues relating to health equity to ensure better clinical outcomes for these patients who are at increased risk for poor disease outcomes.

Furthermore, behavioral health/psychosocial considerations need to be actively addressed. Compared to the general population, patients with IBD are much more likely to face psychological co-morbidities (anxiety, depression).⁹ 

Financially, patients have additional costs related to their medical care. Patients with pediatric– onset of disease face a disproportionate burden with both annual and lifetime cumulative costs.⁸ Young adults encounter unique challenges living with a chronic illness during the beginning of their early careers, putting them on an unequal playing field compared to their peers given the potential for higher levels of work absenteeism and financial responsibilities with extra healthcare–related costs.

Key takeaway

Young adult patients with IBD face greater challenges compared to their peers, and addressing these issues is critical for improving their lives medically, psychosocially, and professionally.

References

1. Dave S, Reed S, Patel, K, Kim SC. Roundtable on Emerging Adults with IBD: A Multi-Stakeholder Perspective and Patient-Driven Analysis of the Current Transitional Challenges and Gaps in Research. 2023. https://doi.org/10.1016/j.hctj.2023.100006

2. Dahlhamer JM, Zammitti EP, Ward BW, Wheaton AG, Croft JB. Prevalence of inflammatory bowel disease among adults aged ≥18 Years — United States, 2015. MMWR Morb Mortal Wkly Rep. 2016;65(42):1166-1169. doi:10.15585/mmwr.mm6542a3.

3. Goodhand J, Dawson R, Hefferon M, Tshuma N, Swanson G, Wahed M, Croft NM, Lindsay JO. Inflammatory bowel disease in young people: the case for transitional clinics. Inflamm Bowel Dis. 2010 Jun;16(6):947-52. doi: 10.1002/ibd.21145. PMID: 19834978.

4. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, Slap GB. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993 Nov;14(7):570-6. doi: 10.1016/1054-139x (93)90143-d. PMID: 8312295.

5. Michel, H. K., Siripong, N., Noll, R. B., & Kim, S. C. (2020). Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model. Crohn’s & Colitis 360, 2(3). https://doi.org/10.1093/crocol/otaa055

6. Bray, J., Fernandes, A., Nguyen, G. C., Otley, A. R., Heatherington, J., Stretton, J., Bollegala, N., & Benchimol, E. I. (2016). The Challenges of Living with Inflammatory Bowel Disease: Summary of a Summit on Patient and Healthcare Provider Perspectives. Canadian Journal of Gastroenterology and Hepatology, 2016, 1–5. https://doi.org/10.1155/2016/9430942

7. Social Determinants of Health. (2022, December 8). Centers for Disease Control and Prevention. https://www.cdc.gov/about/sdoh/index.html#:~:text=What%20Are%20Social%20Determinants%20of,the%20conditions%20of%20daily%20life.

8. Lichtenstein GR, Shahabi A, Seabury SA, Lakdawalla DN, Espinosa OD, Green S, Brauer M, Baldassano RN. Lifetime Economic Burden of Crohn's Disease and Ulcerative Colitis by Age at Diagnosis. Clin Gastroenterol Hepatol. 2020 Apr;18(4):889-897.e10. doi: 10.1016/j.cgh.2019.07.022. Epub 2019 Jul 18. PMID: 31326606.

9. Hu, S., Chen, Y., Chen, Y., & Wang, C. (2021). Depression and Anxiety Disorders in Patients With Inflammatory Bowel Disease. Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.714057​​

About the author: Dr. Kim is the Chief of Pediatric Gastroenterology, Hepatology & Nutrition at Cleveland Clinic Children’s. She is a nationally recognized expert in pediatric and adolescent inflammatory bowel disease.