The transition of adolescents from pediatric to adult healthcare services is fraught with anxiety. What are you doing to support their journey and engage them in their future health systems?

Nemours Children’s Health’s Chief Experience Officer Peggy Greco, Ph.D., Chief Patient Experience Officer, and Customer Success Manager Cami Mitelman of NRC Health discussed this quandary during a recent NRC Health webcast.

“For all of us, loyalty is really key. We want our patients and families to return—a key demographic is looking for that. They’re looking for a healthcare system they can trust, rely upon, and go to for their healthcare needs for the rest of their lives,” Greco says. “This age group is our older adolescent young adults. Think of this transition as a bridge. We want to figure out how to help adolescents and young adults move smoothly from pediatric healthcare to adult healthcare.”

Benefits for Patients, Families, and Health Systems:

• Increased confidence/ engagement
• Increased responsibility
• Decreased distress
• Improved compliance/health
• Establish care relationships
• Loyalty
• Decreased distress
• Improved compliance/health
• Positive financial implications

“With all of these factors, young adults are more likely to comply with appointments, with their regimens, and have improved health. So, there’s pretty significant benefits to focusing on transition,” she says.

The benefit of adult care systems focusing on transition is that they’re likely to establish care relationships very early, especially in a vulnerable time for most young adults. And to maybe engage in care partnerships that last a lifetime. They are more likely to gain loyalty and decrease distress if adult healthcare systems are aware of and respond to the needs of young adults. They will also see improved compliance into adult adulthood, she says.

There are positive financial implications, too. Pediatric healthcare systems are age-limited, but that’s not the case for adult healthcare. When you think about an older adolescent, 18 to 21, engaging with an adult healthcare system, that’s a lifetime of healthcare ahead of them.

What Patients and Families Communicate about the Transition

When you think about teen and family perspectives, there are several different ways to get input.

• Standard survey questions are given after visits or hospital stay surveys. There are also open-ended comments. You can run thematic analysis based on keywords such as adolescent, adult, and transition. So that’s one source of data, Greco says. 
• Family and or teen advisory councils. This is another valuable source of information to come to them and engage in a discussion of this topic. 
• Virtual advisory groups. Nemours uses a group of 35,000 patients and families who have opted in, covering a wide representation. Topical surveys about a specific area are sent periodically, providing in-depth feedback.  

Biggest Concerns about Transitions from Teens and Parents 

• Finding adult doctors 
• Ability to manage healthcare 
• Insurance 
• Medications 
• Finances 

Perceived Needs of Parents: Adult medicine is a tough world. They do not care as much and may not fully understand how to treat older adolescents. 

• Procedural and timing information—At what age should we transition? Is there an exit-type appointment? 
• Finding a compassionate, qualified doctor who accepts insurance 
• Guidance through the process

Perceived Needs of Teens: I dread starting over with another doctor and explaining it all over again. 

• Help with the transition as well as stress and anxiety involved—Can my mom still help me with appts? I’m nervous it will be hard, or they won’t believe me. 
• Finding a qualified doctor they can trust—How do you trust someone new to your private stuff? There aren’t a lot of doctors that understand my condition. 

How Pediatric Health Systems Can Build a Proactive Approach 

• Transition policy 
• Educate both patient/parent about the need to prepare 
• Assess readiness 
• Allow for practice 
• Discuss concerns openly, together with parents 
• Facilitate connection with adult care system/provider 

How Adult Health Systems Can Build a Proactive Approach 

• Policy/guidelines 
• Partner with pediatric system (system-wide, illness-specific, physician-specific) 
• Education 
• Discuss concerns openly 
• Utilize available resources 

“Think about education. Not just education about transition, but there needs to be a need to educate patients and parents about the need to prepare. So ideally, you would start this process around 12 or 13. And it’s a smooth, logical process stepwise through their adolescence. But many parents, and sometimes patients at 12 and 13, don’t quite understand the rationale for starting so early. 

In fact, on our survey, which we sent out to 12 and up, one of the respondents said, ‘I’m just a kid; why are you asking me all these hard questions?’ So again, we want to ensure they understand the rationale and engage with us in this process. 

It’s helpful to know readiness, and readiness does not always correlate with age. So, you have to have ways to assess readiness. Allowing for practice is key. If you expect a young adult patient to engage in new behaviors on their first visit with an adult healthcare system, that’s a lot. We want them to practice and gain confidence before they leave the pediatric health system.” 

Watch the full webcast on-demand.

And check out: National Alliance to Advance Adolescent Healthcare’s resources: Got Transition? 

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