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18 to 30: The Under-Recognized At Risk Patient Population

Today’s uncertain health care climate is a source of confusion and anxiety for many; from older adults with pre-existing conditions to employers trying to navigate the ever-changing rules and regulations, questions about what’s next for health care  in the United States are everywhere. And while there was an uptick in Millennials who cited health care as a key concern during the 2016 Presidential campaign, many young adults might be more at risk for gaps in coverage than they realize.

“Patients in the 18 to 30 age range, the ‘transition ages,’ often find themselves without primary care physicians, without the resources or time to manage their pre-existing conditions, and often without the awareness to effectively manage their own care,” said Shivani Agarwal, MD, MPH, a clinician in the Penn Rodebaugh Diabetes Center. “What I see most often in our young adults in the diabetes transition program is that they are most at risk for emergent health problems and falling off the health care wagon, so to speak, when the management of care becomes their own responsibility.”

Agarwal, as well as clinicians at Penn Adolescent & Young Adult Medicine, one of whom shed some light on adolescent health care during the back to school season, and those in the Penn Medicine and Children’s Hospital of Philadelphia Internal Medicine/Pediatrics Residency Program at Penn who recently published an article about the care transition for young adults with chronic illnesses, are focused on tailoring their patient care toward young adults who are in the midst of this major transition phase. In keeping with the theme of changes – and questions, for that matter – we asked Agarwal, who is also a an assistant professor of Medicine in the division of Endocrinology, Diabetes and Metabolism, to dive a little deeper into the challenges and the risks that can arise as young adult patients transition to managing their own care.

Q. What are some of the biggest risks this population faces as they begin to navigate their own care?

A: The biggest risks are 1. getting lost to care and 2. less engagement in disease self-care.

There are a myriad of things that may contribute to these patients not making it across the chasm between pediatric and adult care and decreasing their self-care. These include lack of access to adult physicians who are knowledgeable and interested in tailoring their care to young adults, and competing priorities in the young adult’s life such as school or work.

This inability to maintain long-term care turns into a vicious cycle which can involve worsening disease control and the use of the emergency room or non-specialists to take care of complex diseases. Particularly for the patients I see in clinic with type 1 diabetes, continuous access to care is critical for disease management and ultimately keeping patients complication-free.

Q. How are you, and other clinicians who generally see younger adult patients, easing the stress or the confusion that can come with taking control of one’s health care? And, are there specific steps pediatricians can take to successfully “hand off” these patients?

A: There has to be recognition among clinicians who care for young adults that this population has unique needs and that their care needs to be tailored accordingly. Pediatricians need to recognize that it may be time to let go of the young adult even if there has been a longstanding relationship with that patient, as well as prepare the adult provider on nuances in the patient’s care which they may not be privy to from a cursory view of medical charts. 

Treating young adults as fully-fledged self-sufficient adults would ignore their struggles with competing priorities as well as their newfound independence. Conversely, treating these patients as children would, of course, hamper their ability to transition to full adulthood.

We’ve developed a model which fosters and supports young adults in a developmentally appropriate way, focusing on care coordination, continuing education, behavioral support, adult care orientation, and pediatric partnership using a multidisciplinary team approach. Not only have we been able to prevent patients from getting lost in transition, but we have been able to improve disease control as well, which is the ultimate goal in caring for patients with diabetes.

What’s also interesting, and something I’ve seen since I started at Penn, is that college, graduate students, and young working adults tell their friends about their health care experiences. Just like with word-of-mouth restaurant recommendations, a good experience – in this case, a smooth health care transition with a clinician who tailors care to the needs of the young adult – is something the patients want to tell their friends about. This, in fact, has helped us keep many more young adults who may have recently moved away from home, in the continuum of care.

Q. What can patients themselves do differently, or what should they be most mindful of, as they progress from teens to young adults, to more effectively manage their care?

A: Again, the transition from childhood to young adulthood can be challenging in many ways, and these challenges can take shape in teens’ social lives, their schoolwork or jobs, their relationships with family, and even in their health. During these years, teens start exercising independence while still having the safety net of parents should they struggle or need guidance from an older adult. This becomes the opportune time for teens to start setting the foundation for self-care and independence so that when they become young adults, those habits have already formed.

Clinic visits should begin to focus on the patient themselves while still in pediatric care – they should be the ones communicating directly with their physicians, speaking more than their parent or caregiver during the appointment, maybe even start seeing a physician without a parent present. The logistics of managing a chronic disease, such as diabetes, can sometimes be overwhelming, so learning to take care of themselves at an early age while still having the support of a parent or guardian is vital to successfully manage the disease and avoiding emergency care.

Having practiced these behaviors early on will mean that managing their own care is ingrained in their minds as a necessary part of everyday life when these patients reach their early 20s. Ideally, having had this experience as a teen will allow the patient to understand their responsibility and the importance of disease management, so they don’t get lost in the care transition.

Q. With the changing health care landscape, how can clinicians and patients overcome some of the potential larger challenges to avoid trips to the ED and/or more serious consequences?

A: Arguably the most important aspect is making sure health insurance lapses do not occur, so these young adults with chronic diseases are able to avoid urgent care. Conditioning young adults to pay attention to health insurance and medication coverage can also prevent certain gaps in care. Luckily, many young adults have been able to benefit from insurance coverage under their parents through age 26, but there is no guarantee this provision will remain long-term.

Ultimately, the recent discussions about health insurance coverage and access to care will be critical to health outcomes in this population, especially those who are most vulnerable in the low-income and minority groups on Medicaid insurance.

Q. Is there any research that is being done – or that should be done – to better inform how to manage this population to keep them healthy, out of the ED, and on the care continuum?

A: While recent research efforts have doubled over the past few years in the healthcare transition field, there are still two areas that remain mostly understudied: 1. the care pathway for young adults who are lost in transition and 2. how disparities based on socioeconomic status and race/ethnicity contribute to the complexities of the healthcare transition during young adult periods.

These fields will ultimately identify those that are most at risk for poor outcomes during healthcare transition and need to be further studied. Hopefully, insight into this vulnerable population’s specific needs will allow for creative and effective ways to provide support at arguably the most vulnerable time in their disease course.

So while we don’t quite know what the future holds from policy or research standpoint to prevent young adults from slipping through the health care cracks, we do know that teams are working to ease the health care  burden, if only a little bit, for patients who are aging out of the pediatric system and must manage their own care. As with many of the health care changes and uncertainties at this time, we may just have to wait and see.

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