leukemia (ALL) is the most common type of pediatric cancer. New research suggests that young patients with ALL and their
parents are likely to report to their physician that they took more of
their anti-cancer medication than they actually did.
The study, published online in Blood
, the Journal of the American Society of Hematology (ASH),
reports that 84% of patients with ALL or their parents
over-reported adherence to a regimen of 6-mercaptopurine (6MP), an oral
maintenance therapy for pediatric ALL.
‘Young patients with acute lymphocytic leukemia and their parents over-reported adherence to anti-cancer medication than they actually did.’
Physicians prescribe 6MP for two
years after chemotherapy for patients to achieve durable remissions, but
studies show that over 95% of prescribed doses must be taken to
"Because this therapy is administered orally every day, we cannot
supervise our patients to make sure they are taking their pills," said
senior study author Smita Bhatia of the University of Alabama
at Birmingham. "Findings from this study suggest that we need better
ways to monitor intake of medications as prescribed."
This study builds on trends observed among children with chronic
illness with at-home treatment regimens, and is the first to directly
compare self-reporting against electronic monitoring in pediatric cancer
Dr. Bhatia and colleagues gave 416 pediatric ALL patients from 87
participating institutions across the United States prescription pill
bottles for their 6MP that contained a microprocessor chip in the cap to
log the date and time the bottle was opened. These logs were then
compared against self-report questionnaires completed by patients or
their parents and provided to their physicians at monthly check-ups.
In addition to observing a majority of patients over-reporting the
number of days that they had taken their medications, researchers
observed a direct inverse trend in over-reporting. Of those found to
adhere to their regimens (defined as taking their prescribed dose 95% of
the time), a small percentage (8%) over-reported their intake. However,
among those found non-adherent, a substantially larger percent (47%)
"We observed that there was an inverse relationship between
over-reporting and the extent of non-adherence," said Dr. Bhatia
In order to find out why patients were not taking their prescribed
medication, lead study author Wendy Landier, also of the
University of Alabama at Birmingham, organized separate one-on-one
interviews with patients and their parents. In these interviews, Dr.
Landier noted that forgetfulness was the primary reason for
non-adherence. "We found that partnering with a parent was very
conducive to our patients' adherence, playing a key role in combating
forgetfulness," said Dr. Landier.
Recognizing the importance of parental involvement in patient
adherence, the team was inspired to conduct further research to make
parents more involved. In a trial that builds on this study, physicians
send personalized text messages to both patients and their parents at a
prescribed time reminding them to take their medicine. Both patient and
parent then report back, via text, that the indicated dose was taken.
"Our first study showed that non-adherence was prevalent, increasing
the risk of relapse. We then found that parental vigilance was an
important facilitator to adherence, while forgetting to take the
medication was the most commonly reported barrier. We used these
findings to inform the intervention trial to help families improve
adherence to treatment. We hope that this will be a real step in
improving outcomes in children with leukemia," said Dr. Bhatia.