Transitioning Providers with IBD

As adolescents with inflammatory bowel disease (IBD) grow older, they will eventually need to transition from a  pediatric to an adult specialist. This transition can be challenging if young adults are not prepared to take responsibility for their healthcare. Even young adults who choose to remain with their pediatric specialist should transition from dependence on their parents to independent self-management. Successful transition to an adult specialist requires collaboration among the patient, family, and healthcare teams.

Healthcare providers, parents, and the young adult themselves all need to take responsibility for educating the patient about his or her disease, medications, and other healthcare needs. Ideally, this should be done before a young adult with IBD begins their first job or goes to college. The patient should be encouraged to ask questions and participate actively in care.

Transition is a process and not a single point in time.

The process of transition should begin in early to mid-adolescence.  It is helpful for patients to begin seeing their pediatric provider without their parents during adolescence to gain comfort and independence. It is also important to identify adult gastroenterologists knowledgeable and comfortable in caring for young adults with IBD.  

Young adults should begin understanding their disease, their medication, and the various tests that may be ordered or performed.  They should be able to make appointments on their own, call in prescriptions, know when to call or see their doctor, and know their insurance provider.  Also, it’s helpful to understand the impact of lifestyle decisions on their well-being. This can all be discussed with the patient’s provider.  

The following is a checklist of tasks recommended based on age. (link to PDF and Tasks)

• Between ages 11-13: know condition, know medication, know the impact of the disease
• Between ages 14-16: know the medical team, know the various tests, know about support groups, understand risks of not taking medication, understand risks of lifestyle decisions
• Between ages 17-19: know how to find information, book appointments, fill prescriptions, contact medical team, know insurance information
• Between ages 20-23: identify an adult gastroenterologist, schedule initial visit with adult provider

Knowledge

• What is the patient’s disease (Crohn’s disease, ulcerative colitis)?
• Where in the intestine is the disease located?
• What medications does the patient take (name, dose, purpose, side effects, interactions)?
• If the patient has had surgery, what kind of surgery was it?
• What tests have been done, and what are the results of those tests (imaging studies such as CT, upper endoscopy, colonoscopy, liver biopsy)?

Independence and Assertiveness

Independent health behaviors are an important step before transition. The patient should be responsible for:

• Medications, doctors’ visits (scheduling and self- reporting at visit)
• Self-advocacy at school and work
• Understanding insurance issues and information

Health and Lifestyle

• Diet, formula supplement
• Effect of drugs, smoking
• Consequences of nonadherence
• Fertility/sexuality

The precise age at which children and adolescents assume these tasks and responsibilities varies based on their psychological, emotional, and social maturity as well as their disease activity, environment, and support systems. This process is dynamic and is not the same for everyone.