Transitioning in IBD - A Challenging Step

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Below is an informational article, originally written for a 2013 issue of CIRCLE eNewsletter by Sandy Kim, MD and Maureen Kelly, RN, MS, CPNP. In it they discuss transition from the clinician perspective, outline transition stages and goals for parents and patients, and provide answers to frequently asked transition questions.

What is transition from a healthcare provider perspective?

Transition is defined as "the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems" (Blum, et al. 1993. Journal of Adolescent Medicine). This differs from the transfer of care, which refers to the actual move from one healthcare provider to another. The goal of successful transition is to effectively empower young adult IBD patients while ensuring that they possess the necessary medical knowledge and self-management skills. As healthcare providers, we want our young adults to successfully navigate the health care system as independent individuals. The process of transitioning from pediatric to adult-centered health care should be seamless, and should occur when the adolescent or young adult is in a stable place, both physically and emotionally. Challenges to a smooth transition may occur, and include inadequate preparation of the patient, parental fears, and the pediatric provider's own reluctance.

What are the stages of transition and goals at each stage?

Ages 12-14 years: The transition process begins at clinic visits with the healthcare provider's assessment of transition readiness. 

Goals: Your child should have dedicated one-on-one time with their provider. They should be able to identify their specific disease and know their medications (names, dosing & schedule), and understand and be able to talk about the importance of medical adherence (sticking to the care plan).

Ages 15-17 years: The transition process continues with ongoing assessment of transition readiness and increasing interaction between the teen and the healthcare provider. 

Goals: Your child should know their medical history, be able to answer disease-related questions, and have increasing one-on-one time with their provider.

Ages 18-21 years: The transition process should be completed and the patient will have an independent clinic visit (without parents). 

Goals: Your child should receive their medical summary. They should be able to schedule their own appointments, call in and pick up prescriptions, and directly contact their healthcare provider with questions and updates. They should also demonstrate a clear understanding of insurance coverage.

How can we encourage independence and medical adherence?

Fostering independence may be difficult for parents as they are transferring control of care to their child. This process can be improved by encouraging open communication between the patient, parent and the whole health care team (doctors, nurses, specialists, psychologist, nutritionist, etc.). To ensure successful care transitioning, it is important to help patients understand their disease and develop strong self-management skills. This will improve medical adherence and help them manage their disease effectively on their own. Throughout the transition process, it is crucial to allow for one-on-one time between the healthcare provider and the patient.  

At what age should my child leave the pediatric healthcare provider? Should he/she stay with the pediatric provider or move to an adult provider during college? 

Generally, transition is completed between ages 18-21 years. Many college students stay with the pediatric provider throughout college, while others may choose to transfer their care to an adult provider. Often, those who go directly to work after high school change to an adult provider at that time.

How should I help my child choose an adult provider?

Important things to consider include the expertise of the adult provider not only with young adults but also their expertise in IBD. Other considerations include the gender of the provider (is there a preference for male or female?) as well as specific qualities of the provider and the supporting staff that are important to the patient (such as relaxed vs. intense).

What paperwork should be brought to the first appointment with the adult provider?

1. Medical summary from the pediatric gastroenterology team, which includes diagnosis, dates and results of procedures (endoscopies, radiographic studies), most recent laboratory results (blood and stool studies), list of medications
2. Health insurance information
3. Name of pharmacy and contact information
4. Contact information for primary care provider, relevant sub-specialists, and emergency contacts

What changes should I expect when my child goes from the pediatric to adult gastroenterologist? 

The healthcare provider will communicate with the patient directly, not the parent. The provider will expect the patient to contact the office with any medically - related issues.

What changes occur at age 18 years if my child stays with the pediatric gastroenterology team?

The healthcare provider most likely will communicate with the patient, not the parents, since he/she is a legal adult at age 18 years. The patient must give permission for the health care team to contact the parents if he/she would like the parents to stay directly involved. We encourage the patient to take control of their care at this point; if the transitioning process has proceeded as outlined above, the patient should be able to do so comfortably.

How do I make sure my child gets the care he/she needs in college?

Most colleges and universities are willing to work closely with young adults who live with chronic illnesses and have processes in place to ensure that appropriate accommodations are made. Things that should be taken into consideration once your child has decided where they will be attending school include the following:

1. Register with disability office on campus. The office typically has staff members who can guide you through the process and identify key contacts in housing, student health, and in student affairs. Your child's doctor will likely need to fill out some forms.
2. Determine whether special accommodations are necessary for housing/dorms. Things to take into consideration include the availability of bathrooms (is there one for the entire floor or are there options for suites/private bathrooms?) and dining hall/food options (can special diets be accommodated? Is there an option/access to kitchenettes/refrigerators for snacks/nutritional supplements?)
3. Choose a local health care provider, including a primary care physician and gastroenterologist if your child's college is far from home. The patient should have a copy of the medical summary to provide the health care providers/clinics locally, and keep a copy for him/herself.
4. Identify the location of the nearest pharmacy where prescriptions can be filled.
5. Identify clinic/hospital where laboratory testing (i.e. blood and stool testing) and infusions/injections (i.e. Remicade) can be done.

What are some tips for parents as their children transition to adulthood?

1. Parents should be ready to discuss expectations and plans to help their young adult child take on more responsibility for their medical care.
2. Parents and patients need to participate in joint decision making throughout adolescence (especially during the later teen years), with a gradual transfer of increased responsibility to the teen/young adult. Start the process of letting go long before they leave for college. Encourage adherence and independence in their medical regimens. Remember, the better prepared they are with your watchful eye, the more successful your child will be when they leave home!
3. Unconditional love and support to your child will go a long way. Remember, no one (including parents) is perfect.
4. Parents should encourage their children to report problems to their doctor (or to call their parents if they have a health problem and are unsure of what to do).

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This article was co-written by Sandy Kim,  MD, Co-Director of the Inflammatory Bowel Disease Center at Children's Hospital of Pittsburgh of UPMC and Maureen Kelly, RN, MS, CPNP, Clinical Assistant Professor at The University of North Carolina at Chapel Hill

Editor's note: This article was originally published in January 2013 in CIRCLE eNewsletter. It has been reviewed and approved by the authors as of February 2018.

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