Transitioning to adult care for inflammatory bowel disease (IBD) patients

Our Program

At Children’s Health℠ we work with clinics across the hospital to develop programs to move older kids with chronic illnesses into an adult healthcare system.

Led by the Division of Gastroenterology, Hepatology and Nutrition -Transition of Care program helps kids with chronic illnesses move from Children’s Health into adult treatment. Transition occurs on an outpatient basis at the gastrointestinal (GI) clinic.

Each day, our gastroenterology team strives to empower young patients so they thrive as they move toward independent care. We work closely with the patient’s family and adult care providers to make sure everyone involved has the information necessary to ensure positive outcomes for a teen well into adulthood and beyond.

Process

The medical team determines when the patient and their family are ready to begin the transition process. It most often begins around age 14 and continues until the patient turns 18. The physician will start by having a conversation with the patient. She’ll explain to the child that, as he ages, he will have different needs and that his treatment will move to an adult clinic or hospital.

Over the next few years, the focus of transition of care is on helping patients and their families to develop new skills. Children will learn about their condition, including information about medications they are taking. They will also develop self-management skills so they can move toward independent care while working on coping strategies to deal with any pain, stress and anxiety they may have.

In addition to the medical staff, pediatric health psychologists have particular expertise aiding in the transition to adult care. A psychologist can not only help children develop a healthy self image, she can teach them how to talk about their illness to others, such as adult healthcare providers or prospective employers. Questions a psychologist may ask a patient during the transition to adult care might include:

What are your future plans (including school, work, etc.)?
Will your family (or others) remain involved in your care?
What are your insurance options once you turn 18?
What will you do in case of an emergency?
What is your transportation situation?
If you're going away to school, will you have a personal care physician in whatever town your college is in?
How will you get your medications delivered to your dorm room?

Patients begin transitioning to an adult model outside of the Children’s Health system between 18 and 21 years of age.

Support

Support groups and camps provide invaluable tools for kids transitioning into adult care.

Each year, the Crohn’s and Colitis Foundation of America (CCFA) organizes hundreds of support groups around the country for children with IBDs. Patients and their families come together in these intimate gatherings to connect with other kids who are living with IBDs. Kids can share stories, seek emotional support and connect with a community of people just like them. Besides formal gatherings, families can also have their questions answered at the many informal events such as picnics, lunches, workshops and even gala events.

In addition to its 40-plus local chapters, the CCFA also offers Camp Oasis, a co-ed residential camp program for children living with Crohn’s and UC. Camp Oasis' many fun activities include visual and performing arts, sports, outdoor adventures and leadership development. A camp experience like the one at Camp Oasis helps build kids’ self-esteem, connect with peers and develop a positive outlook. Volunteer physicians and nurses are on hand for 24-hour care, working to ensure campers follow the regimen prescribed by their doctors back home.