Tips for transition from pediatric-to-adult care in chronic disease

CHICAGO — The transition from childhood to adulthood can be a big change for everyone, and that is no different for patients with chronic illnesses, including inflammatory bowel disease and other immune mediated inflammatory diseases. However, these individuals also have the added complication of changing over from pediatric to adult care, which can bring along its own set of challenges.

In her presentation at the Interdisciplinary Autoimmune Summit, Anita Afzali, MD, MPH, FACG, medical director at The Ohio State University Bowel Disease Center, said that young adult patients often experience significant delays to their first visit, and more than half of patients do not complete a successful transition due to gaps in care, interruptions in medications or withdrawal from health care services.

“There is increased risk of anxiety and depression in these patients,” she said. “We are basically seeing that these young adults that are not appropriately transitioning are not utilizing their health care resources or system the way they should.”

While some physicians might think they are efficient in moving their pediatric patients on to adult care, Afzali said it is important to look at that move as a transition that doctors should help their patients prepare for over the course of several years rather than a simple transfer.

Here are a few of the do’s and don’ts Afzali gave during her presentation that can help empower patients as they prepare to take authority over their own health care decisions:

Do: Keep patient engaged in conversation and medical visits

Don’t: Ignore patient and only speak to caregiver/parent

“Early on we should be able to introduce this concept to our patients, the caregiver and everyone in that room,” Afzali said. “Make sure to keep the patient engaged regardless of age.”

Do: Ask patient to report/share symptoms

Don’t: Let caregiver report patient symptoms

“Make sure, at some point, that patients are describing their symptoms and not necessarily always being given or reported by the parent or the caregiver,” Afzali said. Being able to describe their disease should be one of the earliest goals for young patients to achieve, usually around age 11 to 14 years.

Do: Make age appropriate goals

Don’t: Disengage patient

Afzali said it is important to set goals that help ensure patients are ready at a cognitive level and have the knowledge and maturity they need to make the transition. Milestones that show they understand their disease and can manage their health care can be broken down by years and covered as the patient progresses in age.

Do: Introduce the future in the adult care model

Don’t: C aregiver fear of transition

“Introduce to them that this is a chronic disease and your patient will be seeing an adult care provider,” Afzali said. “Introduce that concept very early. Sometimes the parent or caregiver will say that ‘we don’t want to talk about that right now,’ but kind of throw it in there once in a while.”

Simple statements about the future of their care can help patients understand what is coming when they transition to adult care, Afzali explained.

“Don’t allow any one, including yourself as a provider, to fear this transition,” Afzali said. “A transition means that’s good. It is healthy, better outcomes.” – by Alex Young

Reference:

Afzali A. “Transition of the of the adolescent from pediatric to adult care providers.” Presented at: Interdisciplinary Autoimmune Summit; April 5-7, 2019; Chicago.

Disclosure: Afzali reports being a consultant or speaker for AbbVie, Janssen, Pfizer, Takeda and UCB. She also reports research/grant support from AbbVie, Celgene and Takeda, and she is a founder and board member of IBD Horizons and MyIBD app.