SNOWMASS, COLO. — Pediatric rheumatologists who hope to help adolescents make a smooth transition to adult care would be wise to talk up the importance of work.
That includes asking patients about chores and any volunteer experience, Patience H. White, M.D., said at a symposium sponsored by the American College of Rheumatology.
Children with chronic medical conditions often stay with their pediatric providers for too long, and many have a tough time making the transition to adult care. The provider should start preparing children before they are 12 years old to help ease the transition, said Dr. White, chief of pediatric rheumatology at Children's National Medical Center, Washington.
Economics can complicate the transition. Adolescents tend to lose their health care coverage as they become adults. In fact, young adults make up the group most likely to lack health insurance. Two-fifths of high school and college graduates have no health insurance during their first year out of school.
The employment situation can be worse for youth with disabilities or special health care needs because they are often the last hired and first to be let go.
What this all indicates, said Dr. White, is that children with chronic conditions, such as juvenile idiopathic arthritis, need to be prepared to get a job, especially one with insurance. In general, the jobs that offer insurance are those that pay at least $15 an hour, and most of those positions require at least 2 years of college and some experience.
Although this might seem like a hard-line requirement, the truth is that most youth already work. It's estimated that 40% of middle school and 80% of high school students do chores and/or have paying jobs, suggesting that working is a developmental milestone of adolescence.
Persons with disabilities who make a successful transition to adult life say that the most important factor in preparing them to be resilient adults—even more important than having friends or receiving support from parents and family—was being required to do household chores.
Patients' transitions toward taking responsibility for their own medical care must begin early, she asserted. Most of organized medicine—including the American Academy of Pediatrics—now recommends that children with special health care needs have a written transition plan by the time they are 14 years old. Dr. White has her patients make a one-page plan, and then works with them on revising it. She begins talking with them about transition when they are about 12 years old, and starts asking parents to leave the room during an examination when patients are 13 years old.
Questioning younger patients helps draw them out and gets them accustomed to the idea of bearing responsibility and making decisions, said Dr. White, who in her ongoing discussions with patients covers the following:
▸ Expectations. Ask patients what they plan to do when they grow up. Also, talk with them about the short-term future.
In addition to the written transition plan, Dr. White also has pediatric patients write out a list of what their responsibilities will be when they take over their own medical care.
▸ Transition. Patients need to be taught to make the transition from pediatrics, which is often prescriptive and nurturing, to adult medicine, which tends to be collaborative and cognitive. That means making sure patients thoroughly understand their condition and prognosis.
▸ Opinions. Solicit patients' takes on their condition and care, as a way of affirming their competence and introducing them to the idea that, even as minors, their decisions are their own.
▸ Participation. Ask patients about their social and leisure activities, and ways they can participate in them more fully.
▸ Reality. Acknowledge that adolescence may be a time of experimentation with sex and drugs. Let patients know about consequences, such as drug-drug interactions, and any other effects such choices can have on their specific conditions.
▸ Chores and work. Find out if patients are doing chores and developing independence skills.
▸ Attendance. Support patients' consistent attendance at school, which will reinforce responsible behavior patterns and improve the likelihood of their completing secondary education.
▸ Planning. Spell out the roles of all individuals who are involved in patients' transition to adult care. Emphasize the need for patients to secure health insurance.