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Internists wanted for complex adolescent care

A growing number of childhood disease survivors need to transition from pediatric care

From the December ACP Observer, copyright 2004 by the American College of Physicians.

By Deborah Gesensway

Consider it an unintended consequence of a dramatic health care success story. Thirty years ago, a child diagnosed with cancer usually died before reaching adulthood. Today, one out of every 640 adults between the ages of 20 and 39 has survived childhood cancer. But do these young adults get their medical care from internists, the specialists most skilled in treating complex health care needs? According to experts, the answer is: Probably not.

Advances in cystic fibrosis have been just as dramatic. Twenty years ago, the median age of survival was 21; today it is 33, and 40% of the 30,000 patients who have the disease are older than 18. But many of these young adults are still admitted to children's hospitals if they need inpatient care and go to pediatric clinics for checkups and follow-up.

Hundreds of thousands of adults in America now survive all sorts of childhood illnesses: congenital heart disease, diabetes, renal disease, cerebral palsy, Down's syndrome, other developmental disabilities and the bronchopulmonary dysplasia that can result from the treatment of prematurity, just to name a few.


Some internists may feel they lack the knowledge or experience to treat childhood disease survivors or young adults with chronic illness. But experts say the field is a major business opportunity for those in internal medicine.



But according to experts in these diseases, most of these patients' general medical care is still being provided—inappropriately, they say—by pediatricians, not by specialists in adult medicine. Experts point out that many older adolescents and 20-somethings who have survived childhood illness have largely fallen through a wide gap in the American medical system: They are too old for pediatric care, but too young for most internists whose practices largely cater to older adults.

Advocates also point out that many internists may be reluctant to provide care to transitioning patients, worried that they don't have the knowledge or experience. But experts insist that internists willing to learn and to be sensitive to the needs of these patients can find their care to be rewarding—and a major business opportunity.

"You don't need to be med-peds or do a fellowship," said Joseph V. Simone, MD, an Atlanta-based retired pediatric oncologist who now chairs the Institute of Medicine's (IOM) National Cancer Policy Board. "Internists have all the basic skills they need to care for this population."

Barriers to care

In 2002, ACP, along with the American Academy of Pediatrics (AAP) and the American Academy of Family Physicians, approved a consensus statement calling on the medical profession to help young adults with childhood diseases switch to adult care.

"[H]ealth care transitions for young adults with special health care needs," the statement read, should "maximize lifelong functioning and potential through ... appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood." (The statement was published in the December 2002 issue of Pediatrics and is online.)

But that smooth transition eludes many childhood disease survivors. The problem? "The pediatricians have all the experience," said Dara P. Schuster, MD, associate professor of internal medicine and pediatrics at Ohio State University in Columbus, Ohio, who specializes in treating adolescents with diabetes. "But the people who have the disease don't want to go to the pediatric office anymore."

Nor should they, said Chad K. Brands, FACP, consultant physician at the Mayo Clinic in Rochester, Minn. Many freestanding children's hospitals nationwide now recognize that they cannot meet the medical needs of adults who have survived complex childhood disease processes.

"Pediatricians' comfort zone is not a 30- to 40-year-old's health care," he said. "Pediatricians have recognized that over time, young adults are going to have to transition their health care for these chronic conditions to adult providers and institutions." Unfortunately, he and other adolescent medicine experts point out, many internists aren't attuned to the needs of this patient group.

A knowledge gap

Teenagers and young adults in general often land in medical limbo between pediatric and adult care. Many internists busy with a largely senior population are put off by the need to keep abreast of standard issues that arise in adolescent medicine, from the epidemiology of high-risk behaviors to the legal rules of confidentiality and privacy.

And taking care of teenagers and young adults who have chronic diseases or who survived childhood illness can be even more intimidating. According to adolescent medicine experts, many internists feel they lack the knowledge, skills or experience to treat this population. For one, they have probably never been exposed to many of these diseases, even during training.

"What do you do with a 30-year-old adult who comes to your office and says, 'By the way, I survived childhood leukemia,' " Dr. Brands asked, or with a 23-year-old college student who as a new patient wants a refill of his stimulant medicine for attention deficit hyperactivity disorder?

Professional societies have not developed practical "how-to" guides and resources for busy clinicians who are likely to meet these patients in the office and not know where to turn for assistance. Nor is there much in the way of traditional continuing medical education on the topic. The AAP offers workshops on transitional care at meetings and online, while patient advocacy organizations like the Cystic Fibrosis Foundation put on annual conferences geared to medical professionals.

Internists can turn to a growing body of literature on topics related to childhood disease survivors. Researchers working on the Childhood Cancer Survivor Study (CCSS), for instance, a long-term study of 14,000 survivors in the United States and Canada, treated between 1970 and 1986, have published about 40 articles to date.

One recent CCSS study, published in the Oct. 19, 2004, issue of Annals of Internal Medicine, concluded that physicians should recommend earlier breast cancer screening for survivors of childhood sarcomas and for those who received chest radiation therapy.

Nonetheless, Dr. Brands continued, internists shouldn't be intimidated by their lack of specific experience. "These are exactly the types of complicated patients that internists have been trained to take care of for decades," he said.

Nor do internists need to feel they have to become an expert in a childhood disease to provide care. A young adult with cystic fibrosis, for instance, would continue to see a specialist in lung and pancreatic diseases.

What those patients need is the same sort of care as patients who were perfectly healthy as a child, said Suzanne Pattee, vice president of public policy and patient affairs for the Cystic Fibrosis Foundation. (Diagnosed at age 4, Ms. Pattee—who is now 41—said she was originally given only a 50% chance of reaching age 5.) An older adolescent with cystic fibrosis, she said, needs a physician to talk to about sexuality and fertility, substance abuse, weight and diet.

Dr. Brands would like to see internal medicine residency programs regularly cover issues of caring for young adults with chronic conditions. In the meantime, he said, professional organizations need to fill the knowledge gap. He is teaming up with colleagues at the 2005 Society of General Internal Medicine annual meeting next May to host a gathering of the society's new interest group on transitional care. He hopes participants will share strategies internists can use to treat survivors of childhood illness.

Different diseases and transitions

Another major barrier to appropriate transitional care is that the needs of patients who survive childhood disease are incredibly varied.

Some diseases, such as diabetes and cerebral palsy, are chronic, so physicians need to follow a traditional chronic disease management model of care. Transition issues for this group have less to do with patients needing a different type of health care and more to do with who optimally should provide that care.

"Patients with diabetes have been making this transition for a longer time," explained Ohio State's Dr. Schuster. "The disease process itself is similar whether you are 10 or 50, and the medicines are frequently the same."

But patients with congenital heart disease need another model of care. While these survivors had surgery to repair structural heart problems, the repairs were "not necessarily fixes, and therefore there are risks associated," explained Scott A. Holliday, ACP Member, program director for the med-peds program at Ohio State University in Columbus , Ohio.

The first group of patients to benefit en masse from pediatric surgery advances is now college-age. As a result, medicine is just learning what the long-term complications—which can include heart failure, arrhythmias, or complications due to cardiac medications or anticoagulation—of those surgeries might be. Patients are also concerned about their risk in pregnancy and genetic risk to their children.

While general internists do not need to know surgical details of such repairs—all patients with congenital heart defects would be followed by a cardiologist—they do need to be aware of the possibility of complications as they manage a patient's everyday health and medical issues.

"You also need to be aware of the resources in your community, because if there is specialty care needed, you need to know who to refer to," said Cynthia Ledford, ACP Member, an assistant professor of medicine and pediatrics at Ohio State University. (For more tips, see the sidebar "Getting started in transitional care.")

Childhood cancer survivors

Getting to know at least one expert in the field is also essential for internists interested in taking on more care of childhood cancer survivors. That's because a community-based general internist will probably see only a handful of such patients—and each one is likely to be significantly different from any other. To start, call the cancer center where the patient was treated and ask to speak to someone involved in long-term survivor follow-up.

But be prepared, warned family physician Kevin C. Oeffinger, MD, to find no one in that position. The field is so new, he said, that the challenge right now is "getting the word out" that patients need to transition to adult medicine.

For childhood cancer survivors, "their disease was cured," said Dr. Oeffinger, who is director of the "After the Cancer Experience" young adult program at the University of Texas Southwestern Medical Center at Dallas and a consultant to the IOM's National Cancer Policy Board. "When they get transitioned, they usually don't have a specific disease. They just have risks." Those risks, he added, won't become apparent until patients are in their 20s, 30s or even 40s.

According to the 2003 IOM "Childhood Cancer Survivorship: Improving Care and Quality of Life" report, two-thirds of childhood cancer survivors experience at least one late effect, with perhaps 25% experiencing effects that may be severe or life-threatening. Nearly one-fifth of these, the report said, were "caused by treatment-related secondary cancers, heart toxicity and lung complications."

That risk and variability make caring for childhood cancer survivors tricky for general internists, who need to understand that the incidence of most late effects increases with age.

Another problem is that late effects, and the risks of experiencing them, vary widely from patient to patient. To further complicate matters, experts estimate that one-third of all survivors of childhood and adolescent cancers will not experience any chronic or late-occurring complication of their cancer therapy at all, according to an article co-authored by Dr. Oeffinger in the July-August 2004 issue of CA: A Cancer Journal for Clinicians. The article lays out a strategy for providing risk-based health care for survivors.

The Children's Oncology Group has developed a set of screening guidelines for the care of long-term survivors of childhood cancer. These guidelines and more than 40 HealthLinks articles for survivors are available online. An interactive Web-based program is under development.

Nonetheless, "most of the problems [experienced by this population] are not cancer problems," explained Dr. Simone of the National Cancer Policy Board. Instead, they are "residual deficits of function because of treatment or because of the disease—growth problems, endocrine problems, cardiac problems, respiratory problems, psychological problems."

To Mayo's Dr. Brands, that means "this is a great transition population that could really benefit from what internists do well in terms of complex care provision, coordination of care, diagnosis and management." Instead of waiting until these patients age and present with heart disease or other problems, he added, internists should start seeing them now.

"Only familiarity and experience will overcome the initial fear and hesitation to do transitional medicine," he said. "Once internists gain some experience, they are going to see that this is a huge opportunity for the field of internal medicine."

Deborah Gesensway is a freelance health care writer in Toronto.

The information included herein should never be used as a substitute for clinical judgment and does not represent an official position of ACP.

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Getting started in transitional care

If you're interested in reaching out to adolescents and young adults who have chronic disease or who survived childhood illness, experts in adolescent medicine have some advice.

First, present yourself to pediatric colleagues and tell them you are ready, willing and able to take on young patients who need transitional care. Even better, contact your local children's hospital or pediatric specialist in the field and offer yourself up for a non-official, mini-internship.

"Pediatricians will welcome you because they feel just as uncomfortable taking care of adults as some internists feel taking care of children," said Cynthia Ledford, ACP Member, an assistant professor of medicine and pediatrics at Ohio State University in Columbus, Ohio. It's also important to check what specialty resources are available in your community, she added, because the subspecialists you regularly refer adult patients to may not be familiar with childhood diseases.

Second, be sure to schedule more time for an initial visit with a young patient, so you have time to "sit down and talk about what differences there are going to be in your approach," said Scott A. Holliday, ACP Member, program director for the med-peds program at Ohio State University.

For some patients used to a family-oriented children's hospital staffed by multidisciplinary teams and support workers, it can be disconcerting to discover "the more matter-of-fact, less warm-and-fuzzy" atmosphere of an internist's office or adult hospital, Dr. Holliday explained. And some adolescents and young adults who have lived with chronic diseases all their lives have developed "some co-dependencies in their relationship" with physicians.

"Even though [the young people] want to grow up," he said, "they often like being the center of attention too."

You also need to remember that these patients, first and foremost, are young. "Whether they have a chronic illness or not, you still have to consider their high-risk behaviors," Dr. Ledford said. "Those behaviors, such as experimenting with alcohol, drugs and sexuality, are going to get them into more trouble at this age."

At the same time, she pointed out, having a childhood disease doesn't make patients more mature. In fact, adolescence and young adulthood are particularly rocky times for chronically ill patients.

"There are decisions they are starting to make that their parents used to make for them, and they do not want to be different than their peers," she said. "They want to rebel against the rules, but it is hard to do that with a chronic disease, like diabetes, because they can get themselves into trouble pretty quickly."

After you get started, "the best way to build a practice is by word of mouth," Dr. Ledford added. "Once you get one of these patients, and they like what you are doing, you will get more."

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