Adolescents and young adults coping with chronic illness may be better prepared to take charge of their own care than their healthy peers, a recent study suggests.
Researchers examined a critical juncture in adolescent medicine – the transition from being a pediatric patient and getting a lot of guidance from parents to becoming an adult who makes independent medical decisions.
The study wasn’t a controlled experiment designed to prove how chronic illness prepares teens to transition to being independent adult patients, the authors note. Researchers also relied on participants to report on their own abilities at certain tasks and readiness to handle their own care, which might be biased. Most of the participants were white and female, so their perspectives might not reflect the experiences of all patients.
Even so, the findings highlight a need for parents and doctors to do a better job of preparing healthy teens to become smart health consumers, said Dr. Cora Collette Breuner, a pediatrics researcher at Seattle Children’s Hospital and the University of Washington who wasn’t involved in the study.
At every visit, Breuner asks her young patients and their parents what they want to get out of the visit and what they expect to happen.
“If we providers ask this every time the patients will be more ready to work with us to improve their health and stay more engaged in both preventative health care and more meaningful health care utilization,” Breuner said by email. “This study points out we need to work on this.”
Teens may not be able to legally consent to treatment or sign medical documents, but parents can still start gradually giving them more responsibilities, said Dr. David Stukus, an allergy and immunology researcher at Nationwide Children’s Hospital in Columbus, Ohio, who wasn’t involved in the study.
“Preparing teenagers for independent living and managing their own health doesn’t happen overnight – this takes years of preparation and practice,” Stukus said by email. “Parents should start this process early.”
Parents should expect teens to be more involved in their own care, including having children schedule their own appointments, prepare a list of questions for doctors, and handling their own check-in and check-out, said Sarah Clark, a children’s health researcher at the University of Michigan in Ann Arbor who wasn’t involved in the study.
“And parents, stay out of the exam room,” Clark said by email. “Allow teens and providers to have a focused and private conversation.”
The study of 494 older adolescent and young adult patients found that having chronic medical conditions was associated with greater readiness for this transition, more self-involvement in completing health-related tasks and less input from parents.
“On the one hand, it is encouraging that our sample of adolescents and young adults with medical conditions were taking initiative to self-manage their medical care given developmental expectations for increased independence during emerging adulthood,” said lead study author Cyd Eaton, a psychology researcher at the University of Georgia in Athens.
“On the other hand, it remains unclear if assuming more autonomy for completing these healthcare tasks translates into actual completion of these tasks, independent of parental oversight,” Eaton said by email.
Teens in the study were about 19 years old on average and 116 of them had chronic medical conditions. The most common diagnosis was asthma, which affected 73 of the youth, followed by hearing or vision problems and neurological disorders.
Less common chronic health problems included diabetes, inflammatory bowel disease, heart conditions, gastrointestinal disorders, reproductive health issues, blood disorders, cancer, kidney or urinary problems, and sickle cell disease, researchers report in the Journal of Adolescent Health.
There was no meaningful difference between healthy and chronically ill youth when it came to keeping appointments, talking with providers or managing daily activities, the study found.
When participants had to live with illness, they did tend to be better at tasks like managing medications and tracking health issues. Overall, they were more prepared to transition to handling their own medical care.