Building Bridges: The Transition From Pediatric to Adult Health Care

Preparing for change is a challenge. In corporate America, an entire cottage industry has sprung up around teaching executives to lead change. As caregivers for children, we all lead change frequently. We prepare for transitions. With children, these milestones include the first day of kindergarten, the liberty of being a licensed driver and the-going-off-to-college day, just to name a few. We get the right books and uniforms and paperwork. We give the necessary "talks" about responsibility, risk and behavior. We look at these transitions as rites of passage. We are good at it. We take it seriously. We know what to do.

The place where we often fall short as parents or providers is in prepping our children for their entry into adult health care. At some point, nearly every person will become responsible for maintaining and managing their own health issues. And yet, many young adults are totally unprepared for this transition. Why? Likely it's due to a multitude of factors.

Navigating the world of health care is complex and is usually steered by a child's primary caregiver for many years. There may be a lack of realization that this transition requires preparation and education for the child over a number of years to be able to handle it. There may be some variability in maturity of young adults in that not everyone exits adolescence at the same chronological age. There is agreement among adolescent specialists that many patients are in teen phases sometimes into their mid-20s.

Knowing the perfect time for transition is a difficult art. Perception of familial caregivers may also be skewed in understanding when the adolescent or young adult may indeed be mature enough to "cut the cord" on managing his or her personal health care. Timing may also contribute -- so many major life decisions occur at the onset of adulthood that the young person may already be overwhelmed and willing to put off taking control of his or her medical management.

From a provider standpoint, there may be several factors contributing to delaying a patient's entry into the world of adult health care. Knowing patients all their lives is one of the perks of treating children, but it may also impair the ability to see them as adults. Not knowing who will catch the patient on the other side, or if those providers are as keenly aware of issues for younger people, especially those with chronic or rare health conditions, may contribute to procrastination in sending patients to the adult stage of health care.

So how do we as the responsible parties make strides in successfully launching our young adults into the world of health self-management? Specialists nationwide have developed many tools and hints to help plan for this transition, in conjunction with patient and family advisory councils. To that end, they have identified six critical elements that will impact successful transition:

-- Establish a policy

-- Track progress

-- Administer readiness assessments

-- Plan for adult health care

-- Transfer to an adult-based practice

-- Integrate into an adult health care environment

To successfully accomplish these six elements, specialists recommend that practices have a formal policy and plan for transition. This should include a timeline, portable health summary that will accompany the patient as he or she moves forward and multiple tools for assessment of readiness and knowledge of health issues to address timing of the transition. These activities should occur at an early age, around 12 years old, per the American Academy of Pediatrics. Different studies have shown that physicians generally start the process later than that, usually about a year before the expected transfer to the adult realm of health care. Most transition scholars agree this is a bit too late for full effectiveness, especially in those with chronic health conditions. So, when should we start and how?

As in every other aspect of pediatric care, the provider and the caregiver must work as a team. The transition plan should be discussed with anticipatory guidance just like other matters related to child health, like bike helmets and immunizations. Agreement on the type of information given about health and the age appropriateness should be routine discussion at appointments, perhaps even in the preschool years. The provider should share the transition policy, tools and plan directly with the primary caregiver so that the expectations and opportunities for partnership are clear early on in the relationship, ideally around that "tween" time of about 12. That way it is a slow, deliberate process, not a sudden breakup.

Families and caregivers can influence the success of transition by concentrating on preparing children in a deliberate and escalating model, much like preparing them for the different phases of their education. A good start is to follow some simple suggestions on three areas that will naturally escalate toward transition.

The first is to foster healthy habits. Hygiene, sleep, diet, activity and stress-management are critical elements to good health. The earlier these habits can be instilled, the more likely they are to be effective. We need to model these behaviors and encourage their execution so they truly become habit. Parents and providers can begin this process at an early age, making it understandable throughout the spectrum of developmental stages. As one specialist with great knowledge in transition puts it, we can teach kids to handle stress either with a bike or a cigarette. Influence in this imprinting period can mold the approach to health for a lifetime.

Secondly, children need to learn how their body works. No one can make judgments about what is a good or bad choice if there is no clarity or understanding on what effect might follow. A basic understanding can grow over time and adjust to major changes, both physiologically and psychologically.

Lastly, children need to learn to speak for themselves. This is a process that can slowly evolve over time. It can begin with a subtle change in the doctor visit: letting kids answer questions on their own. Having them maintain their calendar, make appointments and manage their medication concerns can be added slowly.

At some point, caregivers need to leave the room during the visit and let the child interact one-on-one with the provider. While this may be difficult, there is no ulterior motive or agenda that will conflict with the caregiver's involvement. The point to a great degree is to let children learn to develop a trusting relationship with their provider in a safe and familiar environment. It will be a way to give them a voice to advocate for themselves, a skill they will need not only for health care but to successfully navigate adulthood.

It is difficult to do justice to the complexities involved in transitioning health care. More and more resources and discussion are devoted to these types of activities. As health care continues to evolve and improve, more children are making the move into adulthood, even with chronic illnesses. To ensure that they make the move successfully, caregivers and providers need to team up and prepare them to take responsibility for managing their health care. We must do it, and do it well. Their lives will eventually depend on it.

Dr. Elaine Cox is the medical director of infection prevention at Riley Hospital for Children at Indiana University Health in Indianapolis. She is also the Riley clinical safety officer. Dr. Cox practices as a pediatric infectious disease specialist and also instructs students as a professor of clinical pediatrics at the Indiana University School of Medicine. The former director of the pediatric HIV and AIDS program, Ryan White Center for Pediatric Infectious Diseases at Riley, Dr. Cox helped lead the effort to change Indiana law to provide universal HIV testing for expectant mothers.