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SALT LAKE CITY — University of Utah Health has received a $5 million grant to develop and research tools meant to help patients sort through complex treatment options for a common heart condition called atrial fibrillation.
The grant was awarded by the American Heart Association and the Patient-Centered Outcomes Research Institute earlier this month. The Mayo Clinic will help carry out the research.
The hope is that such tools will help more patients feel invested in their arduous journey through atrial fibrillation treatment, and become more committed to following through on the demanding treatments required, said Dr. Angie Fagerlin, who chairs population health sciences at the University of Utah Health and will be overseeing the study.
"If you feel like it's your decision, you're more likely to follow through on it," Fagerlin told KSL. "That's the whole point of shared decision-making. … The doctors and the patient both agree and were involved."
Approximately 6 million Americans suffer from atrial fibrillation, which is an irregular heartbeat that can elevate a person's risk for heart failure or stroke.
Someone with atrial fibrillation can take blood thinners to reduce that risk, but that in turn makes small cuts — and especially larger injuries — more dangerous for them because of heightened blood loss, said U. manager of science communications Julie Kiefer.
Some patients may decide not to take blood thinners altogether. Those who do are also faced with a choice between using less expensive thinners that interfere with taking common foods and antibiotics and require "frequent blood testing to monitor efficacy," compared to using newer drugs with fewer restrictions that are significantly more expensive and "increase risk for bleeding," Kiefer said.
Fagerlin said it's especially urgent for atrial fibrillation patients specifically to make proactive choices for themselves, because the blood thinners they can take "are either really expensive or they're really complex to take."
In addition, "oftentimes doctors aren't explaining the disease as well as (patients) would like them to," she said, which can lead to an alienated, less committed patient.
The developed decision-making tools "will lay out this information in an easy to understand way," Kiefer said.
"We will be trying to get at what's most important to them, to help them weigh the pros and cons," Fagerlin said.
However, because the grant was announced just this month, the research remains in its very early stages.
"We don't know exactly what those (tools) are going to look like yet, but it will be interactive," Fagerlin said.
She estimated developing the decision-making tools would take roughly a year, after which recruiting of about 1,200 subjects will begin in earnest.
"The team will develop two types of decision support tools. One will be accessible at home or in the waiting room so that patients can prepare for their clinic visit ahead of time. A second will facilitate conversation between patient and provider during the visit," Kiefer said in a release.
The two tools' effects will be compared to one another to determine "which of the processes is best," and also compared against a combination of using them both, Fagerlin said.
She said the study will measure whether patients reliably filled their prescriptions and whether they chose a medication and stuck with it. Other metrics will include information about interaction with their doctors. These results will be tracked for a year.
"Did it improve their knowledge? Did it improve their confidence they made a good decision? Did it improve their perception of their communication with their provider?" Fagerlin said, listing some of the questions the study will endeavor to answer.
Patient mortality data will not be adequate enough for examination after one year, so it can't be used in the parameters of the new study, Fagerlin said. At some point, she said, the plan is to apply for another grant to study the patients' health outcomes for an additional five years.
Dr. Juan Pablo Brito, medical director of the Shared Decision Making National Resource Center and the Knowledge and Evaluation Research Unit at the Mayo Clinic, said he believes the study's findings may eventually serve as a template for how to better include patients in complex decision-making for other health problems.
"What we hope in the end is to answer important questions. What is the best way to support patients in a way that fits the patient and makes sense intellectually, factually and emotionally?" Brito, who will also be directing the research, said in a statement.
"We think this will be the beginning of a new era of shared decision-making."