More sick children are surviving. Are they ready for adult medicine?

(image: Sandyhombre/Flickr)

In the past few decades, what used to be considered medical miracles have become expected and everyday. More children are surviving prematurity, even extreme prematurity. Congenital heart defects are routinely repaired, leukemia has largely become curable, and conditions like sickle cell disease and cystic fibrosis have become manageable chronic conditions with a greatly increased life expectancy.

That’s created a new problem: young adults entering an adult healthcare system that isn’t ready for them. Many have cognitive disabilities or emerging coexisting conditions like obesity, asthma and type 2 diabetes. Many are used to having their care managed by their parents.

A national study of patients aged 19 to 23 with special health care needs – the first to draw on interviews of young adults themselves – finds many of them ill-prepared to assume lifelong responsibility for their healthOnly 55 percent of the 1,865 respondents had received counseling from health care providers about how their medical needs would change with age, and only 53 percent had been counseled on how to obtain health insurance as an adult.

These patients are at risk for their health care falling through the cracks. This survey sample was fairly well connected to the health-care system – 73 percent had a personal physician or nurse — so the real population at risk may be much larger.

“The danger is that young adults won’t fill their prescriptions, won’t take medications properly, won’t make follow-up appointments properly, and make more emergency room visits,” says Greg Sawicki, associate director of the Cystic Fibrosis Center at Children’s Hospital Boston, who led the study, published in Pediatrics earlier this month. “In diseases like cystic fibrosis, there are data showing worse outcomes, that lung function declines during early adulthood.”

Many adult providers feel unprepared to care for young adults with complex chronic conditions. One problem is that they’re unschooled in what used to be purely pediatric illnesses, and in the complications that can emerge as patients age.

The number of adults treated at children’s hospitals is growing. A good example is adult survivors of congenital heart disease, who present with coronary anatomy no adult cardiologist has ever seen.“One of the things we hear is, ‘there’s no one qualified to take care of our patients as adults, so we’re going to continue to take care of them,’” says Sawicki.

But it’s not just a matter of physician training. Adult practitioners have the expectation that their patients are aware of their diagnosis, know how to take care of themselves, make their own appointments and take responsibility. Pediatricians need to prepare their patients to meet those expectations.

Ideally, transition counseling should start in early adolescence, and be a routine part of chronic care. But the youth survey confirms findings of surveys of parents and pediatricians themselves that it’s a spotty process. “In a busy clinical practice, especially when caring for kids with a chronic illness having active medical needs, there’s not as much time to discuss future clinical planning,” says Sawicki.

One message from the survey comes through loud and clear: Adolescents who did receive transition guidance had good communication with the health care system. They were more likely to feel that their doctors had spent enough time with them, listened to them and made them feel like a partner in their care.

Things are getting better. Nationally, Got Transition? works to identify unmet health care transition needs, barriers and opportunities for improving transitions and incorporating transition care into Medical Homes — community-based, family-centered primary care sites that provide and coordinate care for acute and chronic conditions across the lifespan. Earlier this year, the American Academy of Pediatrics issued transition guidelines for clinicians.

Bottom line, whether it’s pediatric or adult care, a patient’s relationship with the healthcare system needs to be more than just coming in and getting medications. Provider mindsets need to change. That’s particularly true for patients who can’t be their own advocates, such as those with intellectual disabilities, and who need outside supports to help them access and comply with care. Giving vulnerable patients the tools to cope with medical challenges is as much a part of health care as making a diagnosis or writing a prescription.

Sawicki GS, Whitworth R, Gunn L, Butterfield R, Lukens-Bull K, & Wood D (2011). Receipt of Health Care Transition Counseling in the National Survey of Adult Transition and Health. Pediatrics PMID: 21824879

Ed note: for more on this topic, see the current edition of Pediatric Views.

  • Linda7315

    As the parent of a soon to be 16-year-old with a congenital heart defect and seizure disorder, this hits home. Although he has begun to assume more responsibility for his own care, he is also a typical forgetful teenager and feels the peer pressure to not be different. Children’s Hospital has been our universe for his whole life, yes he can move to the Cardiac program, but he must leave his other specialists and I am concerned about adult doctors understanding his complex interrelated issues and working together.

  • L M Larson73

    and I would add- with jobs and health insurance not being a guarantee as one turns 18 or graduates from college… where does that  put these kids who are now adults as well

  • Sherie E

    There are More children today in the schools with complex medical issues, due to advanced medical technology. This creates a greater demand for training not only for Learning Disabilities, Behavioral Disabilities but, awareness and training in Medical disabilities and limitations for these children. I have found that being a parent of  a child with complex medical issues their need’s don’t stop there . These kid’s most always face Emotional Disabilities / Mental Health,  Learning Disabilities all of the fore mentioned. It should be recognized by the Dept of Education . These children have quite enough to deal with and if one thing could be made easier and more accommodating for them it should be. An educational environment where one spends approximately 7  hrs a day 5 day’s a week  consumes a very large part of a child’s life.