Most parents start their child on his or her treatment plan with the best of intentions.
Anxious for their child with juvenile arthritis to feel better, parents and child follow physicians’ recommendations precisely.
Medications are taken, therapeutic exercises are done, results are monitored. But sticking with an often complex plan month after month is daunting and adherence can easily slip, even when you know its importance.
If you and your child have missed a physical therapy session or forgotten to take a pill, you're not alone. A study of newly diagnosed kids with juvenile arthritis found 70 percent adherence rates at first but after a year those numbers dropped to about 50 percent. Michael Rapoff, PhD, chief of behavioral pediatrics at the University of Kansas Medical Center who led that study team says, “It’s probably safe to say that a third to a half of kids are not consistent with their treatment plans.”
Reasons for noncompliance are many, including the challenge of taking multiple medications sometimes at different times of the day; side effects that may include stomach upset and weight gain; and frustration over the waxing and waning nature of arthritis symptoms.
Another big stumbling block is the time some drugs take to show a positive effect, perhaps six to eight weeks. Patients may give up on the drug before it has a chance to kick in. And once the medication gets into their systems, a few doses can be missed without an immediate effect so parents and kids may think the drug isn’t doing anything. Despite these difficulties, sticking with your treatment plan is key.
“Overall, the outcome for the arthritis is related to compliance with the medication which controls the inflammation,” says Carol Lindsley, MD, chief of pediatric rheumatology at the University of Kansas City Medical Center. “If we control the inflammation, then we prevent complications from arthritis in the majority of children.”
And if a child’s symptoms can be controlled for a significant period of time, they may be able to get off the medication altogether. So how do you and your child keep on track day in and day out?
Parents and kids need to understand all the components of the treatment plan. If you don’t know why you’re taking a certain pill or doing a certain exercise, you may be more likely to skip it. Open communication with your physician is critical so you can ask for explanations or feel comfortable enough to tell him when something is not working.
“The parents and the patient need to feel like they’re in a partnership with their physician and that they can have input into their treatment plan so they feel that they really own it,” says Jillian Rose, program supervisor of the Hospital for Special Surgery’s Teen and Parent Lupus Chat Group in New York City.
Just Do It … With Organization
Adopt the mindset and pass it on to your child that all the tasks associated with your child’s treatment are not optional. They're just part of your family’s lifestyle like brushing your teeth everyday. Then make things as simple as possible.
Take notes at appointments so you know changes in medication, when to schedule a test or how to do an exercise. Put the pills in a hard-to-miss spot, maybe on the kitchen counter or on the bathroom sink next to your child’s toothbrush. Have your child take pills at the same times every day, after breakfast or after dinner, so it becomes routine. And, administer injections the same time each week, as the doctor prescribes. When possible, keep all the medications together so you’re not searching for anything.
Suzie Wright, occupational therapist and research assistant at Kansas University Medical Center swears by weekly pill strips, boxes that hold just enough pills for one week and divides them by day. She suggests getting different color strips for pills taken at different times of the day.
“I like the pill strips because at the end of the week you can see if you missed any and if your child doesn’t feel good you know why.”
There are also pill containers with electronic monitors. And you can set personal digital assistant, cell phone or digital watch to beep when it’s pill time.
Keep track of medication taken by your child. You can do this by putting a check or a sticker on a calendar after he’s taken his pills. Depending on your child’s age or maturity he may be able to do this himself. As an incentive or to help a child who resists taking medicine, Rapoff suggests a reward system where a child accumulates a certain number of stickers or poker chips, and can pick a special activity or privilege once they accumulate an agreed upon amount of stickers or chips.
Teens can typically take on an increasing amount of their care but parents need to assess a teen’s readiness to do so on several factors, not just based on their child’s age.
“Sometimes parents withdraw their supervision or monitoring too quickly with teens,” says Rapoff.
Eighteen-year-old Christopher Wank from Leawood, Kan., has had systemic juvenile rheumatoid arthritis since he was 12. He’s now responsible for all his medications. But when he was younger, his mother, Laura, would check to make sure he was taking his medicine.
“I wouldn’t hound him on it but I made sure he was adhering,” she says.
Therapeutic exercises aren't fun, and a survey conducted by Rapoff and colleagues found that kids and parents had more difficulty with exercises than with pills. But the benefits can be big for children who need to do them. Wright finds kids will do a limited number of exercises if she links them to an activity they want to do.
“If they want to play basketball then they need to have ankle range of motion so they’ll do those exercises,” she says. Passing a driving test requires neck mobility, applying mascara takes wrist movement. Smaller kids often like soccer or dance. Try to do exercises at a set time, perhaps when watching a TV program in the afternoon.
“I tell them every time there’s a commercial, the TV goes mute,” says Wright. “Do 10 repetitions very slowly and the sound is turned back on. If you don’t, it stays mute.” That’s effective motivation especially for kids with siblings. The bottom line is that complying with your child’s treatment plan is hard work that requires time and effort. But as Laura Wank succinctly puts it, “If you want your child’s health to get as good as it can get, then you don’t have any other choice but to stay on top of things.”