Independently healthy: How specialized clinics guide teens with chronic conditions into adulthood

The University of Chicago Medicine offers a variety of programs for pediatric patients to help them and their families manage chronic conditions.

But, what happens when these young patients “age out” of their pediatric programs?

Two UChicago Medicine programs – one for inflammatory bowel disease (IBD) and another for diabetes – are dedicated to providing support for patients during the transition to adulthood.

The Pediatric IBD Health Maintenance and Transition Clinic at UChicago Medicine Comer Children’s Hospital provides annual wellness and education visits for children and teens ages 10 and up. (Visits are virtual because of COVID-19.) The goal of the clinic is to address patients’ health maintenance concerns related to their IBD diagnosisCrohn’s disease and ulcerative colitis. It occurs when an immune system impairment injures the lining of the digestive system, causing inflammation and symptom “flares,” including severe abdominal pain, diarrhea, bloody stools and weight loss. IBD currently has no cure, so goals for treatment aim to control symptoms and to keep the disease in remission.

Meredith McIntee, APN, is director of Comer Children’s IBD health maintenance clinic, which is the only program in the Chicagoland area that focuses on health maintenance and health teaching as transition preparation. The clinic is available for Comer Children’s patients as well as for patients referred from other hospitals who are looking for support with IBD during the adolescent and young adult years.

A primary goal of the transition process is to shift the role of healthcare manager from parent or caregiver to the young patient.

Research has shown that transition support among pediatric IBD patients can help them maintain remission as adults and even achieve remission from a state of active disease.

McIntee emphasizes the importance of customizing treatment and education according to the individual needs of each patient – who may be as young as 10 – as well as building a relationship of trust over time. “Some 10 year olds may be able to handle conversations that others can’t. So, I always start by asking some basic questions to assess their knowledge: Where is your disease located? What medications are you taking? How do the medications work?” McIntee said. “Sometimes the kids rely on mom and dad to handle the process and other kids are very well informed. So, I use that as a jumping-off point.”

A primary goal of the transition process – which can span the course of eight years – is to shift the role of healthcare manager from parent or caregiver to the young patient. This starts with closing the often wide knowledge gap between parent and child, particularly in the early years.

“Often the parents are very engaged in the visit and are inclined to participate for their child,” McIntee said. “Once I start directing the questions to the children, it’s really apparent how big the knowledge gap is between the parents and the child. As we are talking, the parents really start to see the value of instead focusing the visit on the child’s knowledge.”

Following the initial visits and assessment, McIntee addresses health maintenance issues, including ensuring medical appointments and vaccines are up to date. As trust and engagement grow, she works with patients on disease-specific diet, psychosocial well-being, school accommodations, sexual health considerations and use of alcohol, cigarettes and other substances that can affect the patient’s health. McIntee also provides educational resources and connections to online support communities.

“We spend a lot of time teaching the kids about the disease and then helping them develop a plan to increase their independence, things like filling their own medications, making their own appointments and getting comfortable participating in the medical visit,” she said. “It’s really important for kids and adults to understand their body so that they can be involved in the decision making, advocate for themselves and be comfortable navigating the medical system.”

We help them develop a plan to increase their independence — things like filling their own medications and making their own appointments.

McIntee looks to best practices of other IBD transition clinics across the country for ways to continuously improve the program, including building trust and engagement and meeting the holistic needs of patients. She hopes to further involve multidisciplinary partners, including a dietitian, a mental health professional and a social worker.

“There are several kids that I’ve seen where just generally adjusting to a chronic disease is hard,” McIntee said. “We hope the clinic can help them feel as normal as possible and thrive as teens and into adulthood.”

Educating teens with diabetes

In the Kovler Diabetes Center’s patient clinic, the concept of transition is blurred and constantly evolving, says Amy Hess-Fischl, MS, RDN, LDN, BC-ADM, CDCES, a certified diabetes care and education specialist and program coordinator for the Teen and Adolescent Diabetes Transition Program.

“I don't really feel that there's a hard and fast kind of transfer any longer, because we have diabetes care and education specialists embedded within our clinic who serve patients of all ages,” she said.

We are very fortunate to have pediatric and adult endocrinology in the same clinic at UChicago Medicine.

Each year, the Kovler clinic treats approximately 10,000 children, adolescents, teens and adults with diabetes.

Diabetes affects about 387 million people worldwide, including people who are undiagnosed or unaware that they have diabetes. The condition is characterized by consistently high glucose (sugar) levels in the bloodstream, which results because the insulin hormone needed to move glucose from the bloodstream to individual cells for energy either cannot be sufficiently produced by the pancreas (type 1 diabetes) or is not used effectively in the body (type 2 diabetes).

Both types of diabetes require patients to regularly monitor blood sugar levels, as buildup of blood sugar can lead to serious health problems, including blindness, kidney failure and nerve pain.

Kovler’s specialists team up with pediatric and adult endocrinologists to help teen patients transition their diabetes care and responsibilities from their parents and family to themselves.

“We are very fortunate to have pediatric and adult endocrinology in the same clinic at UChicago Medicine,” said Hess-Fischl. “In the past, pediatric endocrinologists would basically tell their teens at age 18, ‘It’s time to go.’”

She added, “Back then, diabetes educators were seen most often in pediatric clinics, with the thought being that adults don’t need as much assistance with diabetes self-management. That concept has really changed over the last decade.”

In addition to blood glucose monitoring, diabetes self-management skills include medication management, insulin administration, meal planning and weight management, among others. Essential to the teen-to-adult transition, Hess-Fischl said, are setting realistic expectations, building trust, and reassuring parents who are anxious about long-term complications of diabetes on their children.

Transition care involves determining how to build on age-related self-management responsibilities to provide the skills necessary to increase independence.

“Parents are scared,” Hess-Fischl said. “They equate an elevated glucose with instantaneous long-term complications, like losing eyesight. We have to minimize panic and address the reality that once in a while their child may sneak a Snickers bar without taking insulin, which may cause blood sugar to rise.”

While the Kovler clinic works to provide support for patients of all ages, a special clinical care and education program – called InTransit – caters to the specific needs of young adults. Utilizing an advisory panel and discussion board, InTransit’s goal is to empower teens and young adults to manage their diabetes, help them build a community with providers and peers and give them an opportunity to voice their opinions, concerns and suggestions for improving the clinic’s services. The program also shares diabetes resources, including school and community-based support groups.

“Transition is an evolving concept, from the moment of diagnosis,” said Hess-Fischl. “What transition care really involves now is determining how to build on age-related self-management responsibilities to provide the skills necessary to increase independence.”

She added: “It’s going to be a very different journey for everyone. Individualized care is crucial.”