As many as 1.6 million Americans have Inflammatory Bowel Disease, consisting of Crohn’s Disease (CD) and Ulcerative Colitis (UC), and five percent of those cases are pediatric patients. According to the Children’s Hospital of Philadelphia, pediatric patients with IBD will need long-term treatment, as there is currently no cure for either UC or CD. This means that every pediatric patient with IBD will eventually have to transition into adult medical care of some kind.
While the mortality rates of pediatric onset IBD don’t appear to differ from the general IBD population, those who developed IBD on or before their 17th birthday may be at a greater risk for neoplasia. This makes providing a high level of continuity of care of even greater importance for these patients.
The Berliner Transitions Program (BTP)
One pilot program, The Berliner Transitions Program (BTP), is being initiated by leading digestive health experts. Testing of the program will begin in Germany before being applied to other areas across Europe and then in additional countries. Starting with the two-year time frame before a pediatric patient transitions into adult care, the pediatrician and adult-care physician will work closely together. Combining efforts to monitor the patient’s care and teach the patients about his or her illness will help families make that transition to adult care safely and effectively.
So far the BTP program has shown great success in managing many young people who enter adult care with extreme and complex forms of the disease. The goal is providing the best possible continuity of care, which is essential for anyone with a chronic illness.
What you can do NOW to aid your adolescent’s transition
Help your teen develop independent disease self-management. This means giving them increasing responsibility over their own medications, doctor’s appointments and wellness techniques (as age appropriate).
Your teen should learn to communicate effectively with their health care team. Parents should allow the teen to speak as frequently as possible and only interject if a clarification is needed or if something is forgotten. Teaching teens to write a list of questions can also help them better discuss their concerns with physicians.
Discuss tech-based programs with your teen’s doctor. In one 2014 study, published in the journal Pediatrics, web-based and text-delivered disease management and skill-based interventions improved outcomes for adolescents with chronic illnesses.
Choose a new doctor and schedule an appointment for your teen to meet with the doctor before there is an immediate or emergency need. This can help your child to decide if that doctor will be a good fit or not. Remember, sometimes you can find a wonderful doctor who comes highly recommended, but if your teen’s personality clashes with them, or they are uncomfortable talking to that doctor, it’s time to find someone else.
Make sure that all pertinent medical records are sent to the new doctor. This can often mean contacting both physicians' offices to ensure that the records were sent and received. If you have medical tests that were done at a separate facility (like a hospital) be sure to double check whether you need to contact the hospital to have them forwarded, as well.
Be sure that your teen is aware of any insurance information they will need for their care.
Transitioning to adult care can be stressful for a teen or young adult, as well as for the parents. A little preparation can help to make the transition go more smoothly. For additional resources, check out the Got Transition website’s list of resources.
Jennifer has a bachelor's degree in dietetics as well as graduate work in public health and nutrition.She has worked with families dealing with digestive disease, asthma and food allergies for the past 12 years.Jennifer also serves on the Board of Directors for Pediatric Adolescent Gastroesophageal Reflux Association (PAGER).