Making the Move to an Adult Rheumatologist

By Mary Anne Dunkin

Although juvenile arthritis (JA) is a collection of diseases that begin in childhood, that doesn’t mean it will end when your child reaches adulthood. Most children will eventually need to make the move from a pediatric to an adult rheumatologist. For some children that happens when they graduate from high school or college. For some, it happens when they reach a certain cut-off age established by the doctor. And for others, it happens when they become uncomfortable sharing the waiting room with little kids or when they and their doctor just know they’re ready.

Although the first visit with an adult rheumatologist will occur at a single point in time, getting to that point is a gradual process that can take years, says Miami rheumatologist Sandra Pagnussat, MD, one of few doctors board certified in both adult and pediatric rheumatology.

If you are fortunate enough to find a rheumatologist who treats both children and adults, your child may not have a deadline for changing doctors. But most children eventually move away for college or a job and need to find another adult rheumatologist, says Dr. Pagnussat. And all must eventually grow up and play the adult role in their care.

Here’s what you can do to help your child make that important transition:

Start Early
While children develop at different paces, it is never too early to start preparing them for the transition to adult care, says Dr. Pagnussat. The key is to promote autonomy. Even older elementary school-aged kids and preteens can begin taking responsibility for aspects of their own care. Dr. Pagnussat offers these suggestions to facilitate the process:

• Step back at doctor visits. Encourage your child to speak up at office visits, giving her increasing control over the visits as she gets older. Before appointments, help her make and prioritize a list of issues to discuss with the doctor. Eventually most of the interaction will be between the doctor and your child.  As your child gets older, leave the exam room for at least part of the visit to allow her time to speak with the doctor alone. This will prepare your child for times she'll be going to doctor visits without you.
• Put your child in charge of medications. If your child needs shots, teach him how to do it himself – or ask his pediatric rheumatologist to help him. The age children can start giving themselves shots may be younger than you think, so discuss the right time with your child’s doctor. Have your child set alarms on his watch or phone, if he has one, to remind him when it’s time to take medications. Once he has mastered taking his medications without help, give him responsibility for the calling the doctor’s office when he needs prescription refills. Older teens can drive to the pharmacy to pick up their prescriptions.
• Have your child schedule appointments. If your preteen or teen’s doctor says to return for her next appointment in six months, have her be the one to call and schedule her follow-up appointment. If she has a flare or other concern that needs to be addressed between scheduled visits, have her make that call as well.

Prepare for the Move
If you have been working with your child to promote independence, you may be wondering about the right time to make the move. Dr. Pagnussat recommends enlisting the help of your pediatric rheumatologist to help make that decision. “We have questions we ask and are constantly monitoring kids for their readiness,” she says.

Signs that your child is ready to make the transition include:

• The ability to explain her disease to friends and family members.
• Knowing the medications she takes and their purposes and potential side effects.
• The ability to take her own medications –including injections – without help or reminders.
• The ability to undergo joint injections, if needed, without being sedated.
• Knowing how to contact her rheumatology provider’s office and knowing what to do in an emergency.
• The ability to schedule and get to her own appointments.

If your child is going away to college, you can use that as an opportunity to ease the transition. Many students continue to see their pediatric rheumatologist on school breaks but find an adult rheumatologist close to campus to provide care when they’re away, says Dr. Pagnussat. When they graduate, they are ready to make the full-time switch to an adult rheumatologist.

Preparing for a New Doctor
If the time has come and your child’s ready to see an adult rheumatologist, the following advice can help make the shift a smooth and safe one.

• Ask your child about preferences. Chances are your child will have several rheumatologists from which to choose. What factors are important to your child? A young doctor? Male or female? A doctor who is close to home? Ask your pediatric rheumatologist if he or she can recommend a doctor and help your child schedule an appointment.
• Check with your insurance. If your child’s pediatric rheumatologist recommends a doctor, ask your teen to check if he or she is on your insurance plan. If not, suggest that your child share a list of covered rheumatologists with his or her pediatric rheumatologist. This step introduces your child to the reality that much of health care is ruled by insurance.
• Wait until the disease is controlled. If your child is in the midst of a flare or beginning a new biologic, wait until the disease is stable. This is particularly important if your child has a disease such as lupus of SJIA that has the risk of organ involvement.

Making the Move
Once your child has scheduled the first appointment with the new doctor, it’s OK to tag along once or twice during the transition, says Dr. Pagnussat. After that, your child should be going alone. Finally, have your child check in with his or her pediatric rheumatologist at least once after the move to ensure a smooth transition.