- Kidney transplant patients often struggle with low levels of medication adherence, a problem that can put some patients at risk of rejecting their new organ.
At Cincinnati Children’s, that problem is exacerbated in pediatric and adolescent patient populations, according to David Hooper MD, MS, Medical Director of Kidney Transplantation. The strategies and challenges involved in improving medication adherence are significantly different with a six-year-old than with a 60-year-old, Hooper said, requiring tailored engagement approaches and a focus on shared decision-making for children and their parents.
“We know that adolescents have the highest risk of losing their transplant compared to any other age,” Hooper explained. “We know that at least some of that is related to poor adherence, and we think some barriers play a role in that.”
Some children can struggle with taking a complex medication regimen at such a young age. Adolescents might be resistant to following a prescribed set of directions, or be wary of taking medications at school or in front of their peers.
And parental engagement in pediatric care adds yet another foil.
“We’re trying to provide something that is going to keep the child healthy, but at the same time help build their independence,” said John Huber, lead software developer in Cincinnati Children’s Information Services department.
“If the child is really young, the parent is performing a lot of these actions and we’re trying to change the parent’s behavior. As they age, more and more of the responsibility is going to the child,” he said. “That’s different than in adult populations.”
Knowing those risk factors, Hooper and Huber collaborated with a medication adherence team at Cincinnati Children’s to create an integrated health IT network to help providers encourage their patients to stay adherent to their medications. This technology suite has recently helped Cincinnati Children’s earn a HIMSS EMRAM Stage 7 award.
“We wanted to approach the challenge of adolescents not taking their immunosuppression medications in a variety of ways,” Hooper explained. “We developed a redundant system that enables us to better understand what’s going on in their lives and to foster an open dialogue between providers and patients about what’s getting in their way of taking their medications.”
On the software development side of the project, Huber sought to understand what patient-centered care actually means for chronic care management. He offered one metaphor that perfectly illustrated what he and his team were trying to do: keep an airplane in flight.
“The person piloting that plane, or chronic disease management, has to be the patient,” said Huber. “Ninety-nine percent of the time, they’re the ones providing their own care. They’re here at the medical center more frequently at the beginning, but eventually they’ll only come four times per year. For all of that time in between they’re responsible for their care.”
To support patients along their journey, Huber and the team created Lift, an integrated health IT network that puts patients in the pilot’s seat with the guidance of their providers. The integrated health IT network helps facilitate better patient engagement, medication adherence, and shared decision-making.
The system starts with an EHR-embedded technology that produces a patient engagement score based on whether the patient comes in for scheduled follow-up appointments or laboratory testing.
Patients can also use an electronic pillbox that detects when a patient takes her medication through a sensor on the lid. When the patient takes her medication, the sensor sends a signal to the provider’s EHR and also produces a report to show the patient their progress in improving medication adherence.
Finally, clinicians at Cincinnati Children’s use a tablet-based questionnaire to collect information about the barriers keeping patients from taking their medications. Patients can select as many options on the barrier list as are applicable, as can their parents.
Overwhelmingly, the most common barrier to medication adherence is forgetfulness, Hooper reported, although several patients also struggle withstanding the taste or medications or managing side effects.
No matter the barriers cited on the questionnaire, Hooper says the next steps are always the same: clinicians use this information to start a conversation with the patient, culminating in shared decision-making to overcome these barriers.
“I was in with a patient the other day and she identified that it’s hard to swallow pills on her assessment,” said Hooper. “We talked about that and went to her pillbox and she showed me one very large pill. With some sleuth work, we realized that we could prescribe two small capsules instead of one large capsule for her, so we could overcome that variable.”
Providers should engage in an informed discussion with their patients, not lecture them, Hooper said.
“This is really focused on partnering with patients,” Hooper said. “Once they feel like we’re the enforcers, it sort of falls apart. It is an important culture that we’re trying to establish that we’re all partners in this. This is about identifying things that are getting in the way of taking medicine rather than assigning blame.”
When the patient and provider identify the problem together, they can collaboratively identify solutions that will work for that individual patient.
For example, a smartphone app to remind the patient to take her medication will not work for someone who doesn’t like to engage with technology. Other strategies, such as visual reminders in her home, might work better.
Collaboration isn’t just important between patients and clinicians, added Marianne James, Senior Vice President and CIO at Cincinnati Children’s. In order to develop workflows that allow providers to focus on caring for transplant families, IT staff must have a good working relationship with providers, as well.
“Our strategy of really partnering with clinicians in the work that we do from an information services department has really been critical to achieve the level of success that we have,” said James. “We recognize that building those strong partnerships enables us to do things that are helpful to our patients.”
Ultimately, building a team with and around the patient has helped Cincinnati Children’s improve medication adherence in its kidney transplant population. By leveraging extensive health IT, clinicians are able to get to the root of the medication adherence problem, and from there work with patients to improve chronic care management.