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Pediatric Update

 
Summer 2007

Transitioning Chronically Ill Adolescents to Adulthood

Transitioning Chronically Ill Adolescents to Adulthood

One generation ago, most children with chronic illness and/or severe disabilities died before reaching maturity. But today, with advances in diagnosis, treatment and health-service systems, more than 90 percent survive, and each year in the United States approximately 500,000 youths with special healthcare needs—congenital heart disease, cystic fibrosis, diabetes, renal disease, sickle cell, for example—turn 18.

The medical-care transition from adolescence to adulthood for children with chronic conditions can be precarious and few protocols exist to assist with the shift. The situation has changed little since the Society of Adolescent Medicine stated in a 1993 position paper that “systemic inertia, fueled by insufficient information about transition options and outcomes, helps maintain an outdated status quo.” Many questions need to be answered when considering transition:

  •  Who most needs a deliberate transition plan?
  •  At what age should transition planning begin?
  •  How should the transfer of medical care occur?
  •  What preparation is required?

“While many youths with special healthcare needs may move smoothly into adulthood, others will face significant difficulties, especially in moving from child-centered to adult-centered healthcare providers,” says UCLA pediatrician Debra Lotstein, M.D., M.P.H., a researcher with the UCLA Center for Healthier Children, Families & Communities who currently is studying the histories of renal transplant patients over the past 10 years as well as working on developing tools to help promote readiness for transition.

The problems faced by adolescents moving into an adult setting are manifold. The first significant difficulty is finding an appropriate adult physician knowledgeable enough about the medical issues faced by patients who have had lifelong childhood illness. Not every adult pulmonologist, for example, is familiar with the ongoing care required to treat cystic fibrosis nor the complications that manifest in adulthood. Likewise, adult cardiologists are used to managing coronary artery diseases but are not necessarily experienced in the ongoing management of patients with congenital defects.

“Finding the right doctor when the pediatric patient becomes an adult is a very significant issue,” says Robert Ettenger, M.D., head of the UCLA Division of Pediatric Nephrology. He encourages communitybased pediatricians and pediatric subspecialists to work closely with specialty centers that are skilled at managing the specific issues faced by their patients to set the stage for transition, and to even invite adult specialists to meet with their soonto- transition patients beforehand. “It may take an extra effort on everyone’s part, but it is an important step to ensure that the patient doesn’t get lost in the hand-off from pediatric to adult care,” Dr. Ettenger says.

Another approach—one, however, that would take many years before realizing a signficant effect—is to train a new cadre of physicians who are skilled in both pediatric and adult medicine. In terms of primary care, UCLA has joined a number of medical centers from around the country that train residents in combined internal medicine and pediatrics. Also, training specialists in both adult and pediatric medical care would create a workforce of doctors able to take over a patient’s specialized care when they are older adolescents and continue to monitor them into adulthood. Dr. Ettenger says that such a program is being established in the nephrology division at UCLA. “We are trying to get out ahead of the curve on this,” he says, noting that similar “bridge” programs in such areas as pulmonology, hematology/oncology and cardiology could be worthwhile.

Insurance is another serious hurdle. “Access to care is a huge issue,” Dr. Lotstein says. While many of these patients have been covered through California Children’s Services (CCS), for example, that coverage is cut off when they turn 21 years old. In a recently completed study of CCS-eligible patients who lost their coverage after turning 21, Dr. Lotstein found that 28 percent had an interruption in needed care and nearly 25 percent were not receiving any medical care. In California, Medi-Cal will continue to cover recipients past their 21st birthday, but qualifying for this coverage as an adult is much more difficult than as a child or adolescent. And for patients who are losing private insurance—they are too old to remain on their parent’s policy—they must be able to find jobs that will provide them with adequate coverage, or have the financial resources to pay for it themselves. If patients can’t obtain either public or private coverage, Dr. Lotstein notes, they end up in the county safety-net system, “and those centers are terribly overburdened and not ideal for these complex patients.”

“Sometimes in our division we see these terrible situationswhere several months after a patient has turned 21, that patient is hospitalized with a failing kidney because they haven’t been able to obtain the coverage to continue their ongoing care,” laments Dr. Ettenger. A broad policy response is necessary to address the issue, Dr. Ettenger says, but thus far there has been little movement in that direction.

Yet another issue is self-care. Adolescents who have gone their entire lives somewhat protected by the nurturing pediatric medical paradigm often are at a loss when they become adults and must take responsibility for their own healthcare decisions. “Throughout their lives, their parents and pediatricians have taken charge of their medical records, followed through with their appointments and managed their medications and ongoing care, and now they are expected to do it,” Dr. Lotstein says. “Taking on that kind of responsibility is difficult for everyone, but it’s particularly difficult when you’ve been a bit shielded by your parents and your pediatrician.”

Many adolescents with chronic conditions are at higher risk than peers for unnecessary dependency, developmental difficulties and psychosocial delay. To help prevent this and prepare them for the inevitable transition and give them greater autonomy, teens should be encouraged to become more involved in their own care as early as possible, asking questions of their physicians and, when possible, going to doctor visits without parents. They also can be encouraged to manage self-care skills related to their health condition, and to keep a record of their medical history.

 To help healthcare providers determine whether a patient is ready for transition to adult care, the American Academy of Pediatrics offers an online transition kit, available at www.medicalhomeinfo.org/tools/trans.html.

Recommended reading

Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics. 2005 June; 115(6); 1562-8.





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