Easier to Swallow: The Art — and Science — of Getting Kids to Take Their Medicine
Not what it seems: There can be many hidden reasons why kids do not follow their treatment, says Dr. Sandy Cortina.
The 16-year-old boy, recently diagnosed with Crohn’s disease, was depressed.
His mind was filled with the implications of spending his youth coping with the endless doctor visits, surgeries, medications and dietary hassles that come with this often painful and debilitating condition.
The way he saw things, his life was over.
Mired in this state, the boy gave up on many things in his life, including taking his medications. His doctors were not at all surprised when a brief remission ended with a painful flare-up that required hospital care.
“Adherence was just one of his issues. His regimen was to take three pills twice a day, which isn’t necessarily onerous. But he didn’t see the point in doing anything,” says Sandra Cortina, PhD, director of clinical services at the Center for Treatment Adherence at Cincinnati Children’s.
A Widespread Problem
Falling behind on treatment is a worldwide problem that affects almost every chronic medical condition, be it asthma, cystic fibrosis or living with an organ transplant, says Dennis Drotar, PhD, and director of the adherence center. Research demonstrates that about 50 percent of patients fail to consistently take their medications, continue home therapies, or stick to the lifestyle changes needed to maintain their health.
Non-adherence can lead to dangerous problems from undertreated symptoms. It also can increase the chances of harmful side effects, which can occur when clinicians working with inconsistent patients try to adjust dosage levels, Drotar says.
Clinicians deal with non-adherent patients every day. Some of the toughest cases get referred to the adherence center’s clinical service. When established in February 2009, the clinical service was the first of its kind in the U.S. to focus on pediatric treatment adherence. Here, a team of psychologists and other experts use a variety of techniques to help young patients help themselves.
For the 16-year-old boy, the first step toward consistency was to address the underlying depression, Cortina says. As his depression was addressed with medications and counseling, the boy’s parents took over full responsibility of managing his medications, with the promise that the young man could take back that responsibility over time.
As the boy became more receptive to his responsibilities, he was supplied with an electronic pill bottle to track whether he was sticking to his regimen. The white plastic bottles, which cost about $150 each, are equipped with computer chips that measure every time the bottle is opened. Data can be downloaded to a computer by placing the cap in a special base.
The data from the pill bottles provide counselors at the adherence center with a jumping-off point for sessions aimed at getting patients to discuss why they struggle to stick to their regimens.
When Treatment is the Issue
“For many of the patients we see, the regimen itself becomes a quality of life issue, not just the medical condition,” Cortina says. “Having multiple medications can be burdensome, so it’s not unusual for some families to take ‘drug holidays.’ Maybe there’s a basketball practice, and the child doesn’t want to feel queasy, so he doesn’t take his pills that day. Or maybe there’s a sleepover this weekend and mom says, ‘Well, she’s taken it all week so I’ll go ahead and give her the weekend off.’”
In many cases, patients at the adherence center reveal concerns, attitudes and misunderstandings that they never discussed with their primary physicians.
For example, once the 16-year-old boy took back responsibility for taking his medications, the electronic pill bottle indicated he was taking his pills much faster than prescribed.
“Essentially, he wasn’t getting symptom control, so he had started self-medicating. He figured if one pill helps, two would be better,” Cortina says.
Letting go: Dr. Ahna Pai helps families decide when a child is old enough to take care of his own chronic illness.
Giving Patients a Say
“We turned the data over to his GI doctors and we were able to do some shared decision making with him, the doctor, and the parents,” Cortina says. “It turned out that he was responding to an increased dose. So he was right in a sense. And that was really powerful for him to be able to say, ‘See I told you I could do this. I knew what I was doing.’”
The special pill bottles have become such a successful tool that every patient who comes to the center gets them, Drotar says. In addition to the pill bottles, the center studies other ways to help patients stick to their regimens.
When children are afraid to take pills, the center uses a technique that involves swallowing different sizes of candy.
For teens who demand control over their lives, the center lets some patients decide for themselves how they want to be reminded. Instead of being nagged by mom or dad, the adherence center helps teens set up their own cell phone text messages and reminder notes that can be sent through MySpace, Facebook and other social media formats.
“The wording can be as simple as ‘Take your meds!’ says Maria Britto, MD, MPH, director of the Center for Innovation in Chronic Disease Care at Cincinnati Children’s. “Texting is not the answer to all problems. But it’s a useful tool for those who can’t remember and it’s a tool that fits into many kids’ lives.”
Ahna Pai, PhD, a faculty member at the adherence center, studies the tricky transition that occurs as older children with chronic illness assume increasing responsibility for managing their condition. Her research includes working with kidney transplant and stem cell transplant patients.
“There is no magic age for transferring the responsibility for the treatment regimen to the teen,” Pai says. “What tends to happen is a sudden shift of responsibility that is triggered by the patient’s age or a significant life event. Then, in one fell swoop, teens are shouldering multiple regimen tasks, putting them at very high risk for adherence problems.”
For example, a father of a 16-year-old boy with a kidney transplant participating in an adherence center study described a struggle common to many families: teens missing doses of a critical oral medication.
“He started arguing with his parents every time,” Pai says “So the parents decided, ‘OK. You’re 16 years old. It’s time. Here’s your regimen, you have to show us you can do it.’ So they handed whole thing over to the teen for a few months and then the parents realized he started to lose kidney function.”
“The father was really tormented by this,” Pai says. “He told us ‘Somehow he needs to learn to take on this responsibility, but if I let it go, he could lose his transplant. So what do I do?’” The clinical service team brings doctors and families together, hears the child out, and tries to make these decisions — together.