How to Pick a Pediatric Rheumatologist

A pediatric rheumatologist is uniquely trained to treat children with arthritis, and there are only about 350 of them nationwide. If you are fortunate enough to live near a major city or academic medical center, you may have a few of these doctors to choose from for your child’s care. But if you don’t, you may need to drive to another town or even state to see a pediatric rheumatologist or an adult rheumatologist who also treats kids.

Your child’s rheumatologist will play an important role in your child’s life and health, possibly for years to come. By taking time to do some research now, you can ensure you find the best doctor to play that role. Here’s how to find and choose a doctor who is right for your child.

Getting Started

There are several ways to get names and introductory information about pediatric rheumatologists in your area. Start by talking to your child’s pediatrician. Other good resources include:

• Other parents. A great way to connect with other parents is the Arthritis Foundation’s Live Yes! JA Parent online community.
• The American College of Rheumatology’s online directory, at my.rheumatology.org/find-a-rheumatologist. Select “Pediatrics” in the page’s “filters” section.
• Your insurer. If you are on a preferred provider organization (PPO) or health maintenance organization (HMO) plan, your insurer will provide a list of covered or preferred pediatric rheumatologists in your area.
• Your local Arthritis Foundation office. Ask for the person who supports juvenile arthritis families.
• Local medical centers.

Factors to Consider

All pediatric rheumatologists get rigorous training and must meet high standards to practice, but certain factors may make some doctors a better fit than others for you and your child.  These include:

• Affiliation. If possible, see a pediatric rheumatologist affiliated with an academic medical center, says Sandra Pagnussat, MD, a board-certified adult and pediatric rheumatologist. Children with juvenile arthritis (JA) often require multidisciplinary care, and academic centers have multiple doctors in one setting who consult with each other.
• Insurance. If your plan uses a network of doctors, your doctor should be in that network. Going outside of network could result in limited or, potentially, no coverage. Check with your insurer for coverage specifics.
• Location. You will likely be seeing your child's pediatric rheumatologist often and probably for several years and in times of emergency. Try to find one as close to home as possible.
• Your child’s preferences. Older children in particular may have preferences about the doctor they see — for example, male vs. female, older vs. younger. If your child is a teenager, you may want to consider an adult rheumatologist rather than a pediatric rheumatologist, knowing you will have to change doctors in a few years.

Other Information Sources

You can learn more about doctors by:

• Getting involved in JA events. Often pediatric rheumatologists attend or volunteer at events like the Arthritis Foundation’s camps, family days, JA conference, Advocacy days and fundraising events (Walk to Cure and Jingle Bell Run). Attending these events can allow you to meet and get to know them in an informal setting, says Dr. Pagnussat. Being involved also helps you meet parents who can recommend and share their experiences with particular doctors.
• Checking online reviews. Many sites offer patient reviews of doctors. Although they can provide valuable information, don’t over-rely on them as they don't represent the doctor’s entire patient base. “People are more likely to take the time to report a negative experience than a positive one,” explains Dr. Pagnussat. You’d hate to miss out on a great doctor because someone didn’t like him or had a disagreement with his office staff.
• Calling the doctor’s office. Call the office of your top choice(s) to learn more about the practice. Questions to ask on the phone include:

1. Do you take my insurance?
2. How long will it typically take to get an appointment?
3. How far ahead do I need to call for medication refills?
4. Can I communicate with the doctor or staff by email or through a patient portal?
5. Are test results posted on a portal or will someone call with results?

Also, pay attention to how phone calls are answered. Do you usually get to speak with a real person, or is it an automated system that directs you to voicemail? How long does it take for the office to call you back? These can be important clues to how the practice communicates with its patients.

Lastly, when you go in for an office visit, notice how you and your child are treated, if your questions are answered adequately and if you click with the doctor.

When There Isn't a Pediatric Rheumatologist in Your Area

If there are no pediatric rheumatologists in your area, you’ll need to explore other options. These include telemedicine, an adult rheumatologist who sees children or out-of-town travel. Some families travel two or three hours once or twice a year to see a pediatric rheumatologist who coordinates care with an adult rheumatologist closer to home. Others choose to only see an adult rheumatologist who is comfortable treating kids. If you decide to see an adult rheumatologist, you’ll have more to choose from.
Dr. Pagnussat recommends calling your top choice(s) and asking if there is a minimum age for patients. Doctors have different comfort levels depending on the age of the child, she says. Then schedule an in-person meeting to determine the level of interaction and comfort that you and your child feel works best.