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With the help of methods she learned at Cincinnati Children’s, fifth-grader Shanoah Moore never forgets to take her medication for sickle cell disease.
Shanoah Moore is a straight-A student. She plays in her school band, serves on student council, is a member of the National Honor Society and does gymnastics. But taking medication for her sickle cell disease proved a challenge for the 10-year-old fifth-grader.
Shanoah had been treated for sickle cell at Cincinnati Children’s since birth. But when her doctors recommended a new – and challenging – medication, Shanoah and her family needed some support.
“They were very good at answering our questions,” says Sonya Moore, Shanoah’s mom. Doctors recommended Shanoah start taking hydroxyurea, a powerful chemotherapy agent that increases the production of fetal hemoglobin and reduces painful episodes and red blood cell sickling. Like every drug, it has side effects, a big reason why patients have trouble sticking with their regimen.
Lori Crosby, PsyD, a psychologist in the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s, conducts research aimed at helping children with chronic conditions take their medicines. Because improvement is so closely linked to following medication schedules exactly, she says education is the first, most critical step.
“If people do not understand the reason they’re supposed to take medications, it gets in the way. If they don’t believe it will help, it gets in the way,” Crosby says.
To overcome these obstacles, Cincinnati Children’s caregivers are trained to talk frankly and often with families and patients about medications, using methods created by the Center for Adherence Promotion and Self-Management.
“We are systematic in pre-planning and follow-up,” says Crosby. “When something is not working, we try to get to the next option as quickly as possible.”
She adds that sometimes, a picture can be worth a thousand words.
“If patients skip doses because they are skeptical about a drug, for instance,” Crosby says, “we sometimes show a chart of their lab values changing to help increase their motivation.”
Ultimately, Shanoah’s family decided to let her take the new drug, in large part “because of the excellent care that Cincinnati Children’s has provided,” Sonya says. “We had built great relationships with the doctors and nurses and care providers who were part of Shanoah’s sickle-cell routine. They were very honest and transparent about it.”
To help Shanoah adhere to her treatment, the Moores used the ROGER program (see below) and MEMS caps on her medication bottles, with electronic chips that record every time she dispenses the medication. Taking medicine is now a regular dinnertime routine, and the family packs traveling doses for vacation.
Now, Shanoah has no trouble sticking with her medication schedule, even on overnight visits to her grandparents. “She’s been taking it so long, she reminds them,” her mom says. “It’s her taking ownership.”
(Advancing Communication & Care by Engaging Patients). This tool uses motivational interviewing techniques in outpatient clinics. Providers are trained in the technique, and visits to the sickle-cell clinic include a meeting to discuss barriers to adherence and coming up with solutions.
(Remembering appointments and being On time; Getting medication and taking it Everyday equals Responsibility) A web-based self-assessment tool that helps families pinpoint obstacles to adherence and find strategies to improve their routines.
Events such as Sickle Cell Disease Research and Education Day allow families to share solutions and hear about research findings. Our specialists work with teachers and administrators if in-school help is needed to support treatment.
Dr. Lori Crosby conducts research focused on helping kids remember to take medications regularly.
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