CAMBRIDGE, Mass. — Ipsen said a new national survey found that many young people are not prepared for the transition from pediatric care to the adult health care system, highlighting the need for more education and support for teens, young adults and families.
The Cambridge-based biopharmaceutical company said the Healthcare Shift Survey, conducted by The Harris Poll, found broad agreement among young people, parents and health care providers that the shift from pediatrics to adult care can be confusing and difficult to navigate.
According to the survey, 71% of young people ages 14 to 26 said they find the adult health care system confusing, while 66% said they would have benefited from more preparation before changing to an adult primary care provider.
Health care providers reported similar concerns. Ipsen said 89% of primary care providers and 93% of pediatricians agreed that the U.S. does not adequately prepare teens and young adults to navigate the adult health care system. The survey also found that 93% of primary care providers and 97% of pediatricians said teens and young adults need more support preparing for the transition.
“Building the life skills you need as a young adult is hard work, which is why parents and educators focus on teaching teens practical skills like how to drive or use a bank account before they turn 18. This survey makes it clear that learning to navigate the healthcare system needs the same kind of focus,” said Michelle Werner, EVP and president of North America at Ipsen. “This is particularly critical for kids navigating chronic health conditions, where the risks of gaps in care are even higher. Just as we’ve helped raise awareness of rare diseases, Ipsen is committed to continuing to raise awareness and provide resources to help better prepare teens to take over their care when they shift out of pediatrics.”
Ipsen said gaps in care can have real consequences. Among young people who had moved from pediatric to adult care, 43% reported a period without a primary care provider after leaving pediatric care. Twenty-eight percent said they had a health issue that went untreated, 26% reported increased use of the emergency room and 30% said their health worsened after the switch.
The survey also found that many young people struggle with basic health care interactions. Eighty-two percent said making appointments and meeting with health care providers can be intimidating, while 46% said they often leave visits confused by medical terminology.
Providers identified several key skill gaps among teens and young adults moving into adult care, including overreliance on parents, difficulty accurately sharing their own medical history, uncertainty about how to ask providers questions and limited understanding of health insurance basics.
“Moving from pediatric to adult healthcare requires knowledge and skills that should be built along the way, helping youth maximize their skills at each developmental level,” said Susan Shanske, clinical social worker and director of transitional care support at BRIDGES Adult Transition Program. “In many cases, teens are navigating the practical challenges of the healthcare system alongside the emotional impact of leaving school, changing relationships and a desire for increased independence. The good news is that making it easier to learn the practical skills can help emerging adults build their confidence and protect their health.”
Ipsen said the issue is especially important for young people with chronic conditions. Three in 10 young people surveyed reported having a chronic condition, and more than nine in 10 health care providers said the handoff from pediatric to adult care is more important for youth with complex needs.
The survey found that 92% of parents agreed that young people with chronic conditions need extra support during the transition to ensure nothing is missed. Among pediatricians, 91% said teens with chronic conditions have a harder time moving to adult care, and 96% said gaps in care can lead to poorer health outcomes for that group.
“As the mother of a child with a rare disease, I know first-hand the complexity of managing a serious, chronic health condition and the challenges of helping a teen build independence,” Werner said. “That’s why I’m proud Ipsen is committed to creating more awareness of this issue and ensuring families have resources they can use to make it easier for teens to build the skills they need.”
Ipsen said its Healthcare-Shift.com website offers free resources for teens and families, including a conversation guide and transition checklists.
The survey also found strong demand for additional resources. Ipsen said 81% of young people and 84% of parents wished more resources were available to support the move from pediatric to adult primary care. Eighty-eight percent of pediatricians and 79% of primary care providers said there are not enough resources available to support teens and young adults during the transition.
