Making the Move to an Adult Rheumatologist

It’s never too early to start preparing your child for the move to adult care.

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 as your child reaches adulthood. Most children will eventually need to make the move from a pediatric to 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 requires the acquisition of different skills that can take years, says Miami rheumatologist Sandra Pagnussat, MD, one of a relatively 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 an 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 now and when the time is close 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 and become prepared for a time she’ll be going to doctor visits without you. 

Put him in charge of his medicines.  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 her 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 autonomy, you may be wondering if the time is close for the move. Dr. Pagnussat recommends enlisting the help of your pediatric rheumatologist in making 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 smooth 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.

Consider your child’s preferences.  Chances are you’ll have several rheumatologists from which to choose.

What factors are important to your child – a young doctor? A male or female doctor? A doctor who is close to home? Ask your pediatric rheumatologist if he or she can recommend a doctor and help you schedule an appointment.
Check with your insurance. If your child’s pediatric rheumatologist recommends a doctor, ask your child to check if he or she is on your insurance plan. If not, suggest that your child share a list of covered rheumatologists with 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, particularly if your child has a disease such as lupus with risk of organ involvement.

Making the Move
Once your child has scheduled his first appointment with his new doctor, it’s OK to go along with him just once or maybe twice during the transition, if he agrees, says Dr. Pagnussat.  After that he should be going on his own.

While your child will see an adult rheumatologist from here on out, it’s important to go back to the pediatric rheumatologist at least once after the move to ensure a smooth transition. Also, keep in touch with your child’s former doctor to report on your child’s progress.

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