Owning Their Own Care
Adolescent Medicine physician helps teens with chronic illness get ready for health care as an adult
by Lindy Keane Carter
Adolescence is, by definition, a time of risky behavior, hormonal upheaval, conflict with authority, and bad choices. For young people with a chronic illness, one can add anxiety about changing from their pediatrician to a new provider and assuming responsibility for the care upon which their life depends. Not surprisingly, teens with a chronic condition are more likely to smoke cigarettes and marijuana and to have performed violent or antisocial acts.1
Medical transition planning is critically important for these youth, yet most pediatric practices neither initiate transition planning early in adolescence nor offer transition-support services.2
Adolescent Medicine has developed transition services for the pre-teens and teens who are being seen by specialists at MUSC Children’s Hospital. Lynn Manfred, M.D., EdD, Clinical Director of Adolescent Medicine, helps young people with renal transplants, sickle cell disease (SCD), arthritis, lupus, and other chronic conditions prepare for self-care.
“I try to identify the kids as early as possible, at 11, 12 years old, before rebellion sets in,” she says. Manfred involves them in projects designed to make sure they understand their medical problems. She also finds that at this age they are developmentally ready and willing to learn how to take their medications. Parents, too, receive her assistance in helping their children take on more responsibility for their own care.
SCD patients make up the largest group receiving Manfred’s services. She reports that these young adults often have good pediatric care but, when they get beyond 18 years old, they have trouble finding a hematologist who will take care of them. With the arrival of a new hematologist at MUSC Health, their needs are being met, but South Carolina still needs more primary care physicians who are willing to work with hematologists, she says.
These transition services are based on the national program, “Got Transition,” which was developed by the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health (gottransition.org). Got Transition offers resources for pediatric and adult providers, such as a recommended timeline, a Quality Improvement approach outline, and three sets of customizable tools for different practice settings. Manfred feels that this information would be a good resource for an internist or family physician who is the new provider for a teen with a chronic illness as well as the pediatrician who is handing them off. Another helpful resource for primary care physicians, nurse practitioners, and physician assistants is a set of clinical guidelines on transitioning from adolescent to adult care developed by the American Academy of Pediatrics.2
1 Suris, JC, Michaud P-A, Akre, C, Sawyer, S. Health risk behaviors in adolescents with chronic conditions. Pediatrics 2008; 122; e1113.
2 American Academy of Pediatrics. Clinical report. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics Vol. 128 No. 1 July 1, 2011. Available at http://pediatrics.aappublications.org/content/128/1/182.full