Keep the lines of communication open between your family and your doctor.
By Linda J. Brown
What makes a visit to your child’s doctor a good or a bad one? A lot may depend on the news about your child’s arthritis and how well treatment is going. However, multiple studies have found that how well patients communicate with their doctors can have a lot to do with their satisfaction.
Good communication between doctor and patient can also influence how well patients keep up with treatment, ultimately improving health. That’s why it's so important to make sure you, your child and your child’s doctor understand one another when it comes to your child’s treatment plan. And, good communication isn’t just about talking.
A Team Approach
When 12-year-old Cynthia Kane from Arlington, Va., goes to her pediatric rheumatologist appointments, she always brings her color-coded chart that shows at a glance the medications and amounts she takes each day, her lab test results and dietary changes. Her mother, Minneh, carries a little notebook for taking notes during the visit. She also uses it to record questions she and her daughter want to ask.
Cynthia and her mother epitomize the ideal in today’s team approach to the doctor–patient relationship. Everyone takes a role in improving the child’s health. The aim is for the child, parent and doctor to be “on the same page with the treatment plan, with any parameters around what the child can and cannot do, and even with how the child is coping with the disease,” says Laura Robbins, DSW, vice president for education and academic affairs at the Hospital for Special Surgery in New York.
Making the Most of Office Visits
Making sure your doctor has all the information they need such as lab test results and X-rays is important to do before your child’s visit. Check to see if your child’s doctor’s office has received them or that you have them collected beforehand to take with you, especially if you’re a new patient.
“You don’t want to walk into an appointment saying, ‘Did you get them?’ You want to know the doctor has the results. And the only way to do that in many health care systems is to get them yourself,” says Patience White, MD, adult and pediatric rheumatologist and professor of medicine and pediatrics at George Washington University in Washington, D.C.
A lot happens in a short amount of time during appointments so writing down specifics in a notebook may help you or your child, depending upon their age, from forgetting anything. Studies have shown that 20 to 50 percent of what is said in the doctor’s office is forgotten.
You can also use your notebook to jot down any questions or concerns that occur between visits. Make sure you or your child lets the doctor know about concerns.
“A lot of kids don’t understand that there can be flexibility in some medical regimes,” says Deborah Rothman, MD, director of Pediatrics and Rheumatology at Shriners Hospital for Children in Springfield, Mass. “If a particular medicine is really bothering you, there may be a substitute but if you don’t tell your doctor of the problem, he or she won’t be able to help.”
Don’t hesitate to negotiate with the doctor for something your child really wants to do. Seventeen-year-old Lisa Dombeck and her mom, Lucy, from Springfield, Mass. talked with Dr. Rothman so that Lisa, who has polyarticular rheumatoid arthritis, could take a dance class. They found a dance studio willing to work with Lisa, Dr. Rothman explained Lisa’s restrictions to the dance instructors and Lisa got to dance. Likewise, Cynthia negotiated with her mother and Dr. White to play soccer, a concern since sun exposure can cause Cynthia’s lupus to flare. She followed the doctor’s advice about sun protection, was careful to watch for signs of a flare and had a great season.
Children Should be Seen and Heard
At a recent juvenile arthritis conference, Robbins talked with the mom of a 2-and-a-half-year-old with arthritis. The boy had questions about his arthritis and the mom thought her son was too young to ask his doctor those questions.
“I told her I don’t think you can ever start young enough,” says Robbins. “The sooner you start helping your child to voice their opinions and concerns, the easier it will be when they get older.”
And while parents provide essential information about their child’s health, a dialogue between child and physician, geared to the child’s age, is also vital. “I have found that even very young children, 5, 6, and 7, can tell me what’s bothering them. And, it’s really important for them to start talking directly to me because even their parents are sometimes surprised by what they say,” says Dr. Rothman.
Email is being used increasingly between physicians and patients but its use varies by doctor, and it’s certainly not a given. Email communication isn't secure and some health care systems don’t let physicians answer clinical questions via email. But it can be a quick way to get simple, straightforward questions answered or to send lab results as the Kanes do. Kids love technology and patients have even sent Dr. White one-minute videos of their questions. If you’d like to use email, ask your doctor if it’s an option.
There may also be some questions that come up between visits that you need to know how to get answers to immediately.
Room for Improvement
What can you do if communication isn't so good between you, your child and your child’s doctor? First, figure out if you're asking the right questions to get the answers you want. Be confident enough to ask for further explanation if you don’t understand or agree with something. Lisa Dombeck advises kids to “ask questions because no matter how small you think the question is, it will make a difference.”
With pediatric rheumatologists in short supply, it may not be that easy to switch doctors.
Before taking that path, you may want to meet with your doctor to address the problems in a non-confrontational way. Discuss what’s not working and bring suggestions for improving the situation as you might in any negotiation.
“I see this as a team and a team is all about negotiation,” says Dr. White. And when the team goal is the healthiest and fullest life possible for the young person, that’s certainly worthy of negotiation.