Transitioning from Pediatric to Adult IBD

Written by: Marwah Saeed, BSc (Hons), MBBS

Updated: November 21st, 2022

Did you know that more and more children are being diagnosed with Inflammatory Bowel Disease (IBD)? According to Rosen et al. (2015), at least 25% of patients with IBD are diagnosed before the age of 20. There were more than 7000 Canadian children living with IBD in 2018, and it is predicted that by 2030, this will increase to 13,685 (Fu et al., 2022).

Pediatric IBD comes with many unique considerations, one of them being “transition of care”; This is a huge responsibility on top of the many life-changing decisions you already need to make. But it is important to view this as a positive change. Because not only is transition of care an essential journey where you will be taught to manage your illness more independently but becoming self-reliant and accepting ownership of your health is part and parcel of being an adult.

Over the next few pages, we will answer many questions that adolescents with IBD have regarding transition of care.

I have heard phrases such as “transition of care” and “transfer of care” while at the doctor’s office. Is there a difference?

Yes, there is. As you grow older you will eventually need to switch from a pediatric to an adult medical specialist. This is known as transfer of care, which occurs at 18 years of age in the Canadian health care system (Jawaid et al., 2019). It differs from transition of care which is the period during your adolescence where you will be prepared to take charge of your health and make well-informed decisions regarding your IBD and overall wellbeing. It can begin as early as 12 years of age (Crohn’s and Colitis, 2021; Rosario, 2021).

I find the idea of transitioning overwhelming. Is that okay?

Yes, it is. Because if you’re feeling overwhelmed, you are not alone. According to existing data, approximately one-third of parents and one-quarter of adolescents are anxious about transition from pediatric care. After all, it is a new journey to undertake. Also, bear in mind that this process is different for everyone. It can be affected by emotional and social well being, maturity, existing support systems and disease activity and severity. While it can be daunting, studies have shown that if the process is well-organized and coordinated, it can improve health outcomes (Kahn, 2016).

How do I begin transition of care?

It will be a collaborative process where you will work with your health care team and your parents/caregivers. You will be encouraged to become more involved in your health visits such as learning to track your appointments; asking and answering questions; and voicing concerns. You will be required learn more about your IBD and how to manage it. You will become responsible for your taking your medications and keeping an eye out for side effects. Overtime, you will also start seeing your physician/nurse alone for all or a portion of the appointment (Crohn’s and Colitis, 2021; Kahn, 2016).

Will my parents or caregivers be involved?

Your parents and caregivers should be involved in your healthcare as you transition. Their role will involve teaching you about your disease; encouraging you to speak up and advocate for yourself; supervising you as to take on more responsibilities such as scheduling appointments, taking your medications, requesting prescription refills. They can also offer guidance on issues such as insurance coverage and making plans for work or college. Furthermore, they can educate you on your rights and responsibilities once you turn 18 (Crohn’s and Colitis Foundation, 2021; Kahn, 2016; Rosario, 2021).

Is pediatric IBD different from adult IBD?

Yes, it is. Children are more likely to have extensive and aggressive disease with greater involvement of their intestines. They are also at risk for other health conditions such as poor growth, delayed puberty, weak bones (osteoporosis), and psychosocial burdens such as depression, anxiety, bodily dissatisfaction etc (Rosen, 2015).

What can I do to ensure a successful transition?

Transition from pediatrics is not always smooth sailing. There are barriers to a successful transition have been discussed in literature. Common examples include adolescent maturity and readiness, comorbidities, and parental and physician reluctance (Kahn, 2016). But here are some steps that you can undertake to help ensure a successful transition (Crohn’s and Colitis, 2021):

Educate yourself about your IBD and be knowledgeable about your medical history
Do not hesitate to take on a more active role in making your healthcare decisions
Have a copy of your complete medical record and know how to contact your health team
Familiarize yourself with reliable and appropriate resources regarding IBD
Educate your close friends about IBD so they can help you when you are not feeling well
Advocate for yourself at home, at work and at school
Be accountable of your health care and health care choices

You can find more information about these tasks and responsibilities by viewing our IBD transition checklist for patients and parents.

What resources are or tools are available for adolescents?

Transition Readiness Questionnaires: These can be used by your medical team to gauge your health literacy and self-management skills so that they can tailor your transition as needed.
Smartphone applications: Examples include MyIBD, MyHealth Passport, LyfeMD, MyGut and GI Buddy. They can help you track your symptoms, mood, diet, and medications and thereby manage your IBD more effectively.
Transition Navigators: These individuals work with you directly to help you navigate the health care system. They can also assist with non-health related issues such as transportation or finance. However, you may not find them in all centres in Canada.
Healthcare team: Your team may comprise of physicians, nurses, pharmacists, dietitians, and social workers. Don’t forget to consult them if you have questions. They are a fount of knowledge and an excellent resource to utilize (Canadian Digestive Health Foundation [CDHF], 2022; Fu et al., 2022).

What other considerations are there?

Mental Health

As you may already know, IBD has a profound impact on more than just your physical health. It can also lead to an increased risk for developing depression, anxiety, social isolation, and altered self-image. This can lead to poor academic performance, absences from school, delays in starting or finishing college, strained relationships, and lost workdays. Therefore, it is important that you seek help when needed: speak to your family and close friends; look into joining support groups in the IBD community; consider seeking professional help (Carrol et al., 2018; Crohn’s and Colitis, 2021).

College/Work

If you’re over 17, you may be moving away from home for work or college. There are a few steps you could take into better managing your health needs, such as making arrangements for special accommodations. You can do this by contacting your college’s accessibility services department or your employer’s HR department. Always plan ahead and always know your rights (Rosario, 2021).

Travel

You may also choose to travel or study abroad. In which case, start gathering all the documentation and information you will need such as relevant medical information, updated prescriptions and insurance card. You will also require an IBD “Action Plan” from your physician which lists the necessary steps to take if your symptoms worsen. The Crohn’s and Colitis Foundation has some travel resources and a tip sheet which could come in handy (Crohn’s & Colitis, n.d.). These can be found here.

Sex, drugs and rock ‘n roll:

With flare ups and periods of remission, depressive symptoms, low self-esteem and body image issues, IBD can hinder one’s sexual drive and negatively impact interpersonal relationships. Admittedly, it can be a challenge to feel sexy when you are struggling with recurrent, painful diarrhea. And while, conversations about sex and intimacy can be difficult to have, it is important to have honest discussions with your partners and healthcare providers about your concerns.

Adolescence and your 20s are a time of self-discovery and you may be tempted to experiment with drugs, smoking and alcohol. However, just remember that they can have damaging effects on your overall health and well-being. Speak with your healthcare providers and parents or research the topic further to be more informed (CDHF, 2022; Crohn’s and Colitis, 2021).

Download the Transitioning from Pediatric to Adult IBD Infographic

References

Canadian Digestive Health Foundation (CDHF). [CDHFtube]. (2022). Transitioning from Pediatric to Adult Inflammatory Bowel Disease Webinar [Video]. Retrieved November 6, 2022, from https://www.youtube.com/watch?v=oNrgJaORQpY.

Carroll, M. W., Kuenzig, M. E., Mack, D. R., Otley, A. R., Griffiths, A. M., Kaplan, G. G., Bernstein, C. N., Bitton, A., Murthy, S. K., Nguyen, G. C., Lee, K., Cooke-Lauder, J., & Benchimol, E. I. (2018). The impact of inflammatory bowel disease in Canada 2018: Children and adolescents with IBD. Journal of the Canadian Association of Gastroenterology, 2(Supplement_1). https://doi.org/10.1093/jcag/gwy056

Crohn’s & Colitis Foundation. (2021). Fact Sheet – Managing IBD As A Young Adult [Brochure]. Retrieved November 4, 2022 from https://www.crohnscolitisfoundation.org/sites/default/files/2021-11/Young%20Adults%20%20IBD%20-%202021-Final.pdf

Crohn’s & Colitis Foundation. (2021). Pediatric Education Tips on Inflammatory Bowel Disease, Practical Tips for Nurses and Advanced Practice Providers [Brochure]. Retrieved November 2, 2022, from https://www.crohnscolitisfoundation.org/sites/default/files/2020-04/back-to-college-and-school.pdf.

Crohn’s & Colitis Foundation. (n.d.). Studying abroad. Retrieved November 5, 2022, from https://www.crohnscolitisfoundation.org/campus-connection/navigating-college/studying-abroad

Fu, N., Bollegala, N., Jacobson, K., Kroeker, K. I., Frost, K., Afif, W., El-Matary, W., Fowler, S. A., Griffiths, A. M., Huynh, H. Q., Jantchou, P., Karimuddin, A., Nguyen, G. C., Otley, A. R., Pears, C., Seow, C. H., Toulany, A., Tersigni, C., Tignanelli, J., … Benchimol, E. I. (2022). Canadian consensus statements on the transition of adolescents and young adults with inflammatory bowel disease from pediatric to Adult Care: A Collaborative Initiative between the Canadian IBD Transition Network and Crohn’s and Colitis Canada. Journal of the Canadian Association of Gastroenterology, 5(3), 105–115. https://doi.org/10.1093/jcag/gwab050

Jawaid, N., Jeyalingam, T., Nguyen, G., & Bollegala, N. (2019). Paediatric to adult transition of care in IBD: Understanding the current standard of care among Canadian adult academic gastroenterologists. Journal of the Canadian Association of Gastroenterology. https://doi.org/10.1093/jcag/gwz023

Kahn S. A. (2016). The Transition From Pediatric to Adult Inflammatory Bowel Disease Care. Gastroenterology & hepatology, 12(6), 403–406.

Rosario, J. F. del (Ed.). (2021, September). Transition of care: Inflammatory bowel disease (for parents). KidsHealth. Retrieved November 2, 2022, from https://kidshealth.org/en/parents/toc-ibd.html

Rosen, M. J., Dhawan, A., & Saeed, S. A. (2015). Inflammatory Bowel Disease in Children and Adolescents. JAMA pediatrics, 169(11), 1053–1060. https://doi.org/10.1001/jamapediatrics.2015.1982