Few teens with chronic health problems have plans to take charge of their own care

Less than one in five teens with chronic health problems have made plans with their pediatrician to take over responsibility for their own care and transition to seeing doctors who treat adults, a U.S. study suggests.

Researchers examined data from surveys of parents and caregivers of almost 21,000 children ranging in age from 12 to 17, including about 5,900 who were being treated for ongoing medical issues.

Overall, just 17 percent of youngsters with special health needs and 14 percent of youth without any medical issues appeared prepared to transition from being treated as kids with help from their parents to receiving care as young adults responsible for their own medical issues, the study found.

“We were surprised to see just how few youth are receiving transition planning,” said lead study author Lydie Lebrun-Harris of the U.S. Health Resources and Services Administration in Rockville, Maryland.

Adolescence is well recognized as a critical period for helping young people with medical issues transition gradually toward taking more responsibility for their own care and health decisions. But the results highlight how few doctors and parents may be supporting this process, researchers note in Pediatrics.

Ideally, teens should get help developing self-care skills and learning things like making appointments, discussing diagnoses and treatment plans with doctors, and asking questions when they don’t understand something that they’re told during exams.

In the study, researchers identified three main areas as a proxy for teens’ transition planning: doctors talking to teens about how to transition from pediatric to adult providers; clinicians working with teens to develop self-care plans and understand changes in care when they turn 18; and doctors seeing teens alone without a parent or caregiver present during their last preventive health checkup.

Researchers identified young people with special health needs based on records of functional limitations, prescription medication use, high use of health services, use of specialized therapies, and any ongoing emotional, developmental or behavioral conditions.

Just 44 percent of young people with special health care needs had seen a provider alone during their last checkup, the study found. Only 41 percent discussed the shift from pediatric to adult care with a provider. And only 69 percent of the youth with health needs discussed self-care with a doctor, the study found.

Young people were less likely to have help transitioning to adult care if they were uninsured, came from low-income households, or had parents or caregivers without any college education. African-American teens were also less likely to receive this assistance than white youth. Older teens were more likely than younger adolescents to have transition planning.

“Our results underscore the need for health care providers to work with all youth, both independently and in collaboration with their parents, to gain the knowledge and skills they need to prepare for adult health care,” Lebrun-Harris said by email. “Without this preparation, youth, especially those with chronic conditions, are more likely to experience adverse health outcomes, dissatisfaction with care, and visit the emergency room more often, among other consequences.”

The study wasn’t a controlled experiment designed to prove whether or how transition planning might directly impact health outcomes for young people with medical problems.

Even so, the findings highlight challenges pediatricians may face in helping teens plan to transition their care to other providers, especially when it’s unclear who the new providers will be, said Dr. Megumi Okumura of the University of California, San Francisco.

Parents should speak up and urge pediatricians to facilitate these transitions for teens with chronic health problems, Okumura, author of an accompanying editorial, said by email.

These conversations should ideally begin at the start of adolescence, to give teens plenty of time to gradually learn the ropes of managing their own health, Okumura advised.

“Most people don’t like to plan one month in advance, let along having a one-year, two-year and five-year plan,” Okumura added. “But planning is critical to ensure continuity and wellness.”