Roughly one out of every 1,000 children in the United States is diagnosed with juvenile idiopathic arthritis (JIA). Formerly called juvenile rheumatoid arthritis, this autoimmune disorder affects children under the age of 17 and has no known cause. While juvenile arthritis sometimes goes away with age, as many as two-thirds of children who are diagnosed with it will continue to have active arthritis into adulthood. As they approach the age of 18, most of these young people will have to begin moving from being treated by a pediatric rheumatologist to an adult specialist. “Traditionally in the United States, as patients reach 18 years of age, they are transferred from pediatric to adult care,” says Aimee Hersh, MD, Assistant Professor of Pediatric Rheumatology at the University of Utah in Salt Lake City. “There are multiple factors determining when a patient transfers care, such as the patient’s needs, the availability of an adult practitioner, and insurance coverage. Also, adult providers are able to address the issues of adulthood, such as treating someone who is pregnant, that pediatricians are not trained to manage.” Generally, “care transition” is defined as the process that helps young people with chronic medical conditions develop the skills they need to take responsibility for their own health care. “Care transfer” occurs when an adult rheumatologist takes over responsibility for the young person’s treatment. Both shifts come with challenges, but proper planning can go a long way toward helping young people and their parents cope with moving from pediatric to adult care.
Moving from pediatric to adult care: Ask when it will happen
Parents should ask their child’s pediatric rheumatologist at what age he generally discharges the children in his care to adult care providers. Knowing when to expect this transfer will help you, your child, and the doctor prepare for the event in an orderly manner.
“The adult model of care is much more self-guided than in pediatrics,” says Dr. Hersh. “For example, pediatricians tend to be more active participants in coordinating care for our patients, doing things like calling if they miss an appointment. On the adult side, you either show up or you don’t, and it is less likely that anyone is going to call you to set up another appointment.”
These differences can lead to disruptions in treatment that may, in turn, result in less-than-optimal care. One study from Canada found that more than half of transferring patients either never made contact with their new doctors or were lost to follow-up within the first two years of adult care.
In this particular study, the participants’ care was being transferred within the same hospital system, where the doctors knew and worked with each other. It would seem likely, then, that moving between rheumatologists in different practices (or even cities) might result in even lower levels of success.
Dr. Hersh’s own research has shown that the transfer period is a time of vulnerability for patients with chronic rheumatic conditions. One study she conducted indicated that during the first year after they transferred to adult care, almost 30% of young adults had increases in disease activity. Although the full impact of unsuccessful care transfer in the long term is not yet known, she says that it is likely that inadequate follow-up leads to worsening outcomes.
Self-management: Teach your child self-management techniques early on
One important way that you can help ensure a smooth transfer later is to start working on self-management techniques with your child early. Although the actual physical transfer of your child’s care usually doesn’t take place until around age 18, the transition process can begin years before.
Your child can begin to learn how to manage his arthritis starting in the preschool years and early adolescence. For example, in elementary school, children can be taught the names of their medicines, their doses, and when to take them. As they get older, they can begin to take more control over their drug regimen until they are taking it entirely unsupervised by their mid-teens.
The older the child is, the more he should be taught about his arthritis. The eventual goal is to give him the ability to negotiate care decisions with his doctor and take a very active, independent role in his treatment. “The American Academy of Pediatrics, through the Transitions Clinical Report Authoring Group, released a clinical report in 2011 outlining their recommendations on the transition process,” says Rina Mina, MD, of the Cincinnati Children’s Hospital. “Their recommendations say that a discussion of the transition should be done as early as 12 years old.”
By age 14 or 15, the parent, child, and doctor should have a written plan in place that outlines the responsibilities of all involved and also the goals that need to be met along the way toward adult care.
When the child is 16 or 17 years old, the plan should be reviewed at each doctor appointment (or at least once a year) to see if there are any problems that need to be addressed.
Dr. Mina says, “As the child matures, he should be able to take over responsibility for more and more of his care, according to his development at each age as well as any other health issues. If this happens, the switch in care may not be so abrupt.”
Juvenile arthritis and the teenage years: Another barrier to smooth transition of care
Another barrier to a smooth transition of care is, well, being a teenager. These years are a time when peers, school, a car, or work often feels more important to the person with arthritis than health issues, which take a back seat. It is also possible that parents or other caregivers may be hesitant to let the teen take over managing his own arthritis at this stage.
“We sometimes lose track of the fact that patients are not the only ones going through changes,” says Dr. Mina. “This is also a time where relationships between the young adult patients, their parents, and even their pediatric rheumatologists go through a transition as well. For some parents and providers, letting go is not especially easy, which can be made harder if you saw the child suffer in the past.”
In addition to having a teen take charge of taking his medicines (with appropriate parental supervision), another way to encourage a teenager to take more ownership of his arthritis is to allow him to speak privately with the doctor at checkups if he wants to. Eventually, if he’s able to handle the responsibility, it can be the teen’s job to call the doctor’s office and schedule appointments.
How to find a new rheumatologist right for your child’s needs post-pediatric care
When the time comes for the actual transfer of care, one of the first—and most important—steps is finding an adult rheumatologist.
“Among adult rheumatologists, not many choose to specialize in one particular disease, so it might be hard to find who only works with JIA patients,” says Dr. Mina. “All of us who treat adults with predominant arthritis should have training that is comprehensive enough to adequately care for JIA patients.”
What’s crucial is to make sure the adult provider knows about the long-term effects of JIA and about the individual patient’s previous treatment history, so that side effects can be monitored. For example, the adult provider should know about the cumulative dose of hydroxychloroquine (brand name Plaquenil) a person has taken, because taking high doses over long periods increases the chance of eye problems. It is also important for the provider to know if a person has any history of macrophage activation syndrome (a complication that occurs most frequently in people with systemic JIA) and/or triggers for it. People who developed JIA before biologic drugs came on the market or who have been unable to take them should make their adult-care provider aware of any damage to their joints and any resulting functional impairment. Adult-care providers should also know to monitor all JIA patients for uveitis (an inflammation of the eye) throughout their lives.
Beyond these medical issues, an adult rheumatologist’s personality and approach to treatment can be important factors to consider when choosing a new care provider.
“I initially sat down and figured out what I needed in a physician,” says Ali Boyle of New York City, who was diagnosed with JIA as a child and is now in her mid-20’s. “What specifically do I need to look for in a physician to match up their skills and practice methods with my outlook?”
Her first try with a new arthritis specialist did not work out well. While the doctor was well-respected and a very good practitioner, his personality was not a good match for Ali.
“I have an active disease, and I wanted someone who would work with me to actively manage it in addition to being familiar with my specific kind of arthritis,” she says. “I am constantly trying new things, and I want a doctor to be comfortable with that. If something isn’t working, I need someone who will work with me to find something that does. I want to make sure that we have personalities that mesh well.”
There are other concerns that should be taken into consideration when choosing a new doctor. One is the location of his practice—especially since getting there may be more difficult during an arthritis flare. Ms. Boyle mentioned that when she first moved to Baltimore, the public transportation system made it hard for her to get to her appointments. Even when she later moved to New York, one of the doctors recommended to her was uptown, which was inconvenient because she was living downtown.
According to an article published by the Johns Hopkins Arthritis Center in Baltimore, the most common way for a young adult to find a new doctor is to ask for a referral from his pediatric rheumatologist. If your child is staying in the same area where he received pediatric care, then his current physician probably knows most of the local candidates for adult care and can help match their expertise with your child’s needs.
Other tips for finding a new doctor include the following:
-Contact your insurance company.
-Visit the American College of Rheumatology’s Web site (rheumatology.org) to search its “Geographic Membership Directory.”
-Visit hospital Web sites.
-Use a nationally known Web resource, such as U.S. News and World Report’s annual doctor listings (health.usnews.com/top-doctors).
-Ask family members, friends, or other people in your pediatric rheumatologist’s waiting room for recommendations.
If your child is moving to another city for college or work, finding a new doctor may be a little trickier. However, many of the same resources can still be used. Your child may also be able to obtain information and suggestions from a college’s student health service, an employee health nurse (if offered at his job), or bosses or professors.
“I wish I had spent more time with my first physician before starting treatment, in retrospect,” says Ms. Boyle. “I would suggest you sit down with the doctor and do a job interview. Ask them how they would handle your arthritis, find out if they would be aggressive enough, or for some too aggressive, and have them talk about their philosophy about how involved you can be in your own care. Then go to the one that comes closest to what you need.”
Answering insurance questions regarding transfer of care
Insurance concerns may also play a large role in the search for a new physician. Changes brought about by the Affordable Care Act mean that many young adults will be able to stay on their parents’ insurance coverage for a few years. Others, especially if they have been eligible for Medicaid or other government-provided insurance, may have to apply for their own coverage.
If he needs to obtain his own insurance coverage, your child may be able to buy a group policy either through an employer or a student plan at college. He may also be able to buy insurance through an individual plan, although this option is often more expensive. The agent who currently handles your family’s car or homeowner’s insurance policy may be able to write health insurance policies, too. If not, he likely can help find agents who can.
Insure.com suggests several questions that young adults should consider before choosing an insurance plan:
-What are my health-care needs?
-Are my doctors in the plan’s network?
-What will my monthly premiums be?
-What will my other out-of-pocket expenses, such as deductibles and copays for office and emergency room visits, be?
-Does the plan cover prescriptions, and what are the costs associated with my specific drug regimen?
-Does the plan cover complementary medicine practitioners, such as acupuncturists or chiropractors?
-How can I save money on the premium?
After the questions about who will be your child’s new doctor and what his insurance coverage will be have been answered, transferring records to the new doctor to assure continuity of care becomes important. Although the pediatric rheumatologist will do most of the heavy lifting, your child should stay in touch with both doctors to make sure that the information gets where it needs to go. Also, before his first appointment with the adult specialist, your child may want to take the time to think about his own experiences so he can discuss any issues that might not be covered by his treatment summaries with his new doctor.
How to prep for transfer of care day
When the day actually arrives to leave the pediatric rheumatologist’s care, it may be helpful for you and your child to do something to mark the shift. This is a time to say goodbye to someone who was an important part of both your lives. Experts suggest that you and your child acknowledge any feelings of loss that are present.
Brainstorm with your teen about the best way to do this. Perhaps a card, a drawing, or a small going-away gift may be appropriate. Parents can also help their teen identify the things he liked about his pediatric doctor and work out how to tell him so.
“There are so many things going on in your life at that time,” says Ms. Boyle. “If you plan ahead, this doesn’t need to be something that adds to your already-high stress levels. It pays to be prepared for it by having done your homework and preparation.”