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A Hard Pill to Swallow: Why Some Kids With ALL Relapse

January 11, 2017
4 min read
Dr. Smita Bhatia

Dr. Smita Bhatia is a pediatric oncologist who wants to keep her patients healthy by helping them stick to their chemo regimen.

Taking chemo meds every single day can be tough for a kid with cancer. They might forget or just not want to take them. Unfortunately, Dr. Smita Bhatia found that not swallowing that little pill can have big consequences. Read on to learn more about this problem, its effects, and how funding from St. Baldrick’s is helping.

For kids with acute lymphoblastic leukemia (ALL), having to take their chemo meds is as routine as their nightly bedtime story. That’s because for the last two years of their treatment, which is called maintenance, these children need to take their medication every single night.

But that doesn’t always happen.

From forgetting to take the medication to hiding pills under mattresses, kids with cancer don’t always take their oral chemo medication. Called non-adherence, it’s a well-known problem in the childhood cancer community, said Dr. Smita Bhatia, a researcher with the University of Alabama who studies non-adherence among kids with ALL.

And it’s a big problem, Dr. Bhatia discovered. During a non-adherance study of kids with ALL, she and her team inserted special microchips under the caps of the bottles of chemo medication and passed the drugs out to patients. The chips under the caps would record the date and time that the bottle was opened.

“We asked them to take the pills for six months and then return the caps to us. We downloaded that data and we used that to calculate adherence rates,” she explained. “We also took their blood levels every month and tried to see if there was a correlation between the blood levels and the data that we had collected with electronic monitoring.”

Scot sitting on floor surrounded by many pill bottles from treatment

At just 3 years old, Honored Kid Scott was diagnosed with ALL. Here he sits with the empty pill bottles from his years of treatment.

She found that the non-adherence problem was startlingly real. And so were the life-threatening consequences.

According to the results, anything less than 95 percent adherence was associated with an increased risk of relapse. In fact, Dr. Bhatia found that nearly half of all relapses can be attributed to non-adherence.

“With this information, we then decided to do a qualitative study where we had intense one-on-one interviews with patients and their families to see what worked and what didn’t work for them,” Dr. Bhatia said.

Two main pieces of information emerged. First, that forgetting to take their pills was the major reason kids were missing their doses. Second, that when parents make sure they take their medication, kids are more adherent.

So, how does this information translate into helping these kids and families?

Dr. Bhatia is studying that too, thanks to a consortium grant from St. Baldrick’s.

In this intervention, some families receive education through a 15-minute video, while others watch the video and also receive a customized printed schedule. For these families, the child gets text messages each night to remind them to take their chemo, and the caregiver gets a message advising them to watch their child swallow the pills.

There aren’t any results yet to prove which approach works best, but Dr. Bhatia hopes to spread the winning formula across the country so lives can be saved.

She explained that once a child relapses, it can be difficult to get them healthy again. Often times, doctors are unsuccessful. That means the key is preventing relapse in the first place — and that’s why Dr. Bhatia’s work could be a lifesaver.

“I think it will have a very powerful and direct impact on preventing relapses from happening,” she said. “And making sure that once leukemia is diagnosed, that they live very long lives.”

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