Helping teenagers with complex conditions shift from pediatric to adult care services when the time comes | MUSC

One day, you are 17 years and 364 days old, seeing your life-long pediatrician who has guided you through every step of your medical journey from childhood to your adolescent years. The next day, it’s your 18th birthday, an exciting milestone for many, but the option to see your pediatric primary care provider may need to change. This abrupt transition can be overwhelming for patients with lengthy, complex medical histories, especially if there is little in the way of a clear path forward, explained Sarah Mennito, M.D.

This, she explained, is where the necessity for prearranged transitional care plans come into play, particularly for these complex patient populations. Mennito, a Med-Peds-trained pediatric hospitalist, is an expert in this field, having published eight papers on the subject of adult to pediatric health care transition. Med-Peds refers to a specialty that combines the fields of Internal Medicine and Pediatrics.

So what does a successful transitional care plan entail? What are the tools needed to help patients to flourish during the process of changing over care?

The transition from pediatric to adult care services can be quite a mental challenge for patients with chronic illnesses. Certain diagnoses require a multisystemic approach, meaning that in order to treat such complex conditions, considering what care is necessary from various specialties is essential. A major consideration when transitioning from pediatric to adult care involves parting ways with deep-rooted relationships – the very physicians who have supported these patients throughout their lifetimes.

Crafting a comprehensive transitional program for the pediatric population can ensure smooth transfers to the adult health care environment as well as increase self-sufficiency and independence and develop a strong foundation for practicing self-advocacy. While there is no one-size-fits-all instruction manual to navigate through the health care system, there are resources – and more are on the way.

 Dr. Mark Scheurer

“There are lots of transition models out there. In general, there is still so much opportunity nationally to help. And I would say there’s a lot of these different models because there is great need, and frequently, transitions are not consistently done across all specialties in the country. I would say that we are neither behind nor yet at the forefront. But I think we have an opportunity to do more work in that space. And frankly, with the way we’re organized, I think it allows us to do that easier than some,” said Mark Scheurer M.D., chief for Children’s and Women’s Health.

In the short term, the goal, according to Scheurer, is to reinforce the overall structure by developing programs, processes and templates that each specialty can use for their specific needs. Transitioning care from gastroenterology in a pediatric setting to an adult setting, for instance, is going to differ from how it would look for endocrinology or transplant care.

To meet that goal, the MUSC Shawn Jenkins Children’s Hospital recently introduced two new resources to support providers, patients and their families through the transition process. The hospital’s first effort came in August with the development and release of electronic handouts modeled after resources crafted by the national nonprofit organization Got Transition. These handouts will be uploaded to patients’ MyChart After Visit Summary pages. They include a health care transition timeline for youth form, transition readiness assessments and questions for doctors to consider during the transition process. 

Several parents who are part of the Pediatric Family Advisory Council (PFAC) can be credited for the creation of these tools. Got Transition provides a plethora of public tools and handouts necessary for providing support through health care transitions. With approval from the organization, the PFAC worked together to determine how best to modify the documents in order to meet the institution’s specific policies and needs. Secondly, at the end of September, SJCH will introduce a peer support community, which is open to SJCH patients seeking guidance.

“In terms of Got Transition, I see it as a great resource that has really been structured with the goal of making all of their tools accessible to everyone as well as creating tools that are reproducible and editable so that they can be made appropriate for whatever clinical area they’re being used in,” said Mennito. 

 Dr. Sarah Mennito

Mennito will lead future support groups, along with second-year medical student Brian Linder, who participated in pediatric peer support groups at Duke University for adolescents with chronic health conditions seeking support throughout the health care transition process.

“I think that the support groups, by encouraging positive youth development, provide a holistic approach to transitional care,” Linder said. “It doesn’t replace what is happening in the clinical space, but I do think it really helps create the support for those kids who are struggling a little bit more with transition, who might need a little more space to process their diagnosis.”

He expounded on the benefits and importance of focusing on a seamless and positive transition for these patients. “Whether it is living as a teenager with lifelong illness, just feeling different or other than your peers at school, having a space where everyone in the room has a chronic condition who can really empathize and relate to the experiences of each other can be encouraging. To find out what being healthy means to you and to others or to set goals, especially on how to advocate for yourself in the presence of a provider,” he said. 

All of the components that the support groups will bring, he added, will really strengthen how kids and their families function in the clinical space as well as in transition. 

“Obviously, going to the doctor is very important. You have to get those recommendations for your health and have that treatment plan in place in order to keep your wellness in check. What’s really important for folks is to have that support, to be encouraged to actually implement these changes so they can start to value their health more and realize that the self-management piece is the actual manifestation of implementation,” Linder said, adding, “Personally, I think that aspect has become more and more important to me as I’ve seen it through my own experiences as well as learning throughout medical school and with the interactions I’ve had in clinic.”

If you are interested in learning more about the peer-support community for teens with chronic disease, email Sarah Mennito, M.D.

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