How well do pediatricians help transition their adolescents to adult care?

Perhaps not that well, reported pediatrician Renata Arrington Sanders at Hopkins Children’s annual Pediatrics for the Practitioner Update in September. Only about 50 percent of parents report discussing their adolescents’ changing health care needs with a pediatrician, and of those only 42 percent had discussed switching to an adult provider (Pediatrics 2009;123:e145). Also, the 2001 National Survey of Children with Special Health Care Needs suggests that only 41 percent of adolescents receive appropriate transition guidance and support. Barriers, Sanders said, include pediatricians’ lack of knowledge about adult providers – especially those who provide care for patients with special health-care needs – lack of reimbursement for time spent on transitioning pediatric patients, and difficulty for pediatricians and patients to break their long-established bonds.

“The patient and family,” said Sanders, “may feel ‘I don’t want to let go of my pediatrician.’”

But transitioning to adult care is important, Sanders stressed, to promote health and disease prevention, psychosocial adjustment to adulthood, and to maximize the patient’s lifelong function and potential. Also, about 14 percent of pediatric patients have special health care needs for conditions like asthma, muscular dystrophy and sickle cell, making the transition to adult care even more important to future health and well being. So, when do you do it and how do you do it?

Appropriate transition to adult care has to be an “organized process,” Sanders said, beginning at around age 15, and involving many variables, including the patient’s health status and health insurance, legal issues, community resources, housing and transportation. The patient is viewed as an independent person rather than as a dependent family member, which raises myriad complex and ethical issues for pediatricians, from patient confidentiality to power of attorney.

“What if the patient has a disability, severe mental retardation, where he or she may not be able to be independent,” Sanders said. “It’s tricky because you can’t violate the patient’s rights as an individual.”

Sanders pointed to the Harriet Lane Clinic, Hopkins Children’s primary care clinic, as one model for transition to adult care. Among the considerations –

• Help adolescents become more involved in self-care behaviors.
• Create a transition notebook summarizing medical information, including the patient’s medical insurance and history of hospitalizations, procedures and tests.
• For the patient with special health-care needs, include a checklist of providers, medical equipment and medications. Make sure the patient understands prescription labels.
• Discuss with the patient his or her activities, goals, skills, talents, and post-secondary educational or vocational training interests.
• Link the patient to community resources for individuals 18 and over.
• Identify obstacles to moving on to an adult provider.
• Discuss considerations in choosing an adult provider, including gender, location, reputation, and special-needs knowledge.
• Identify potential adult providers.

“By age 17,” Sanders said, “the adolescent should have a plan for obtaining adult primary, emergency and subspecialty care. And by age 18, the patient should have identified an adult provider, arranged for the release and transfer of medical records to the new provider, and obtained adult insurance.”

Pediatricians’ services and time spent transitioning patients, especially those with special health-care needs, is reimbursable, Sanders added. For more information on transition tools and coding for referrals, telephone management, medical team conference, and care-plan oversight, see “Transition to Adult Care: A Primary Care Model. Also, visit the American Academy of Pediatrics Web site on medical home practice.