Avoiding potentially fatal blood clots may often be as straightforward as better educating hospitalized patients about the importance of preventive treatment. That’s one conclusion of a PCORI-funded study on venous thromboembolism (VTE), or blood clots, which usually occur in the leg but can break off and lodge in the lungs.

Amaris White, JD, a patient partner on the study, is excited about the results' potential. “There are so many things in this world we cannot prevent,” she says. “VTE doesn't need to be one of those things.”

The study’s results have great promise, and the research team is now expanding their program. The researchers have received a second PCORI award to refine, adapt, and extend their approach. With this award, they will offer the program in all the floors of the academic hospital where the initial project was done and in a community hospital.

Each year, as many as 900,000 individuals in the United States develop VTE, and some 100,000 die of the condition. These deaths are largely preventable with modern blood thinners.  Hospitalized patients are at elevated risk of VTE, but according to several studies, these patients miss about 12 percent of their blood-thinner doses, most often because they refuse to take them when offered.

In their PCORI-funded project, Elliott Haut, MD, PhD, of Johns Hopkins University and his research team looked at the effects of educating patients and nurses about the risks of VTE and the benefits of preventive treatment. (See original story, Improving Patient-Nurse Communication to Prevent a Life-Threatening Complication.)

"First, we had to find out what patients wanted to learn and how they wanted to learn it," Haut says. Patients, family members, and members of national organizations focused on this medical problem told the researchers that they wanted to know the signs and symptoms of clots. They also wanted to learn more about the risk factors, consequences, and prevention of blood clots, the researchers reported in PLOS ONE.

The study also asked what sort of training could educate bedside nurses about the importance of VTE prevention and how they could best pass this information on to patients. Most nurses, the research team found, preferred interactive online education including real-life scenarios and animated figures, rather than static educational slides.

Encouraging Results

With help from patients, the team developed an educational program—a two-page printed handout and a 10-minute video. In the video, doctors and nurses explain VTE, and six patients describe their experiences with blood clots. The patients talk about severe pain and difficulty breathing, as well as ways to prevent clots. "I wish that I knew then what I know today, so I could have immediately sought the necessary treatment," White says in the video. "I could have actually avoided the entire experience."

Randy Fenninger, JD, the chief executive of National Blood Clot Alliance and a survivor of blood clots, who appears in the video, says that the researchers really listened to the patients’ ideas about the educational materials. “I think every suggestion we made they took,” he tells PCORI. “When we came in, they were still operating up at the clinical level of communicating. We said, ‘Talk to us!’ They very quickly brought it to a level where we and other patients could understand.”

The team decided that giving the educational program to all hospitalized patients and bedside nurses would be a waste of resources. "Why spend an hour convincing people who were already willing to accept VTE prevention?” Haut says. “We focused our time and energy on patients who’d missed a dose and were therefore much more likely to miss more."

So, the research team developed an electronic system to alert staff when a patient didn’t receive a dose. Then, a nurse educator, with an information packet and tablet to show the video, came to the patient's bedside. When the bedside nurse, rather than the patient, was the reason for the missed dose, the nurse educator worked with the bedside nurse.

Patients and nurses on four floors of a large teaching hospital received the educational program, while those on 12 other floors didn’t.

The result: "There was a huge reduction in the odds of missing a dose," says Haut. The odds of missing a dose were 42 percent lower on the four floors with the program than on the floors that didn’t get the educational program.

Research team member Deborah B. Hobson, MSN, RN, says the results are “important to patient safety because we know that VTE causes harm, and most of these clots can be prevented if patients receive the appropriate prophylaxis.” She adds, “Our study revealed that with nurse and patient education, we can decrease patient refusal and missed doses.”

Preferences varied among the patients who were offered the educational program. Some just wanted to talk to a nurse, some wanted to see the video, and some wanted to read the handout. Nearly one-fourth chose both a visit with a nurse and prepared educational materials. Outright rejection of the educational program was rare, Haut says: "Few wanted to have nothing to do with the study."

Expanding Outward

Haut's team has received one of the first PCORI Dissemination and Implementation awards, a program designed to help PCORI-funded researchers contribute to making their findings more accessible in practice.

The team plans to implement and track the effectiveness of their program on all floors of the large teaching hospital where it was first tested, as well as in a medium-size community hospital. The team will track both missed doses and rates of VTE.

Fenninger, of the National Blood Clot Alliance, says that such a demonstration is just what’s needed now. “This program is great for Hopkins, where you’ve got a nurse educator you can free up to do this. My question has always been, is this going to work in a community hospital? Will they have the resources?”

"If the program is effective in both hospitals, it will show people we can do it in their local hospital. Then, we'll go out to the rest of the country," Haut says. He and his colleagues have already moved in that direction, sharing some of their nurse-education materials with the Illinois Surgical Quality Improvement Collaborative.

"We're trying to do the same thing with patient-education materials via social media," Haut says. Three national stakeholder groups—the North American Thrombosis Forum, ClotCare, and the National Blood Clot Alliance—are helping get the word out. Over 18,000 people have already watched the patient-education video on YouTube.

The program and its materials are high quality and now proven to work to help patients make informed decisions, Haut says.  "We'd like to get the information out there."

Posted: May 18, 2017; Updated: June 2, 2017