May 2017—As PCORI-funded studies produce results of interest to patients and those who care for them, we are updating the stories of those projects. The article below was published in June 2014. You can read an update to this story here.
Susan Kulik, DNP, MBA, RN was at her job as a surgical nurse at Johns Hopkins University Hospital in Baltimore when she slipped on a patch of wet floor and fractured her hip. The hospital admitted her right away for surgery to insert pins to stabilize her fractured bones.
The morning after the surgery, Kulik woke around 7 a.m., unable to breathe. “I got very dizzy and scared,” Kulik says. “I thought I was going to die. It was an awful feeling.”
A blood clot had formed in a vein deep in Kulik’s leg, then broken off and traveled to her lung, where it blocked blood flow. This condition, venous thromboembolism (VTE), includes the formation of blood clots in deep veins and pulmonary embolism, in which a clot ends up in the lungs.
According to the US Surgeon General, up to 600,000 patients in the United States suffer from VTE and it causes 100,000 US deaths each year—more than AIDS, breast cancer, and motor vehicle accidents combined. Hospitalized patients are at especially high risk. In fact, VTE is the most common preventable cause of hospital death, according to the Agency for Healthcare Research and Quality (AHRQ). Patients’ immobility plays a part, as do many other factors, including illness-related inflammation and the body’s response to surgery.
There are, however, various ways to reduce hospitalized patients’ risk of VTE. Blood thinners, such as heparin, injected one to three times a day, are the preferred treatment. Mechanical devices, such as compression stockings and sequential compression devices, are alternatives. These measures aren’t fail-safe—Kulik developed DVT despite receiving a blood thinner—but used properly, preventive treatments can lower the risk of VTE by 60 percent.
Luckily, Kulik quickly received heparin, which got her breathing again. Her left leg, where the clot had been, stayed purple for six months.
Calling on her experience as both a patient and a nurse, Kulik is now involved with a collaborative project, funded by PCORI, that aims to sharply reduce the VTE rate among patients at The Johns Hopkins Hospital—and potentially to provide a blueprint for hospitals nationwide.
Venous thromboembolism is an underappreciated public health problem.
How to Avoid Harm From Blood Clots
“VTE is an underappreciated public health problem,” says Elliott R. Haut, MD, PhD, a trauma surgeon and the principal investigator of the project. He holds that higher patient awareness of VTE and better communication between patients and nurses regarding it are the keys to prevention.
Haut became interested in VTE when he was charged with performance improvement at the The Johns Hopkins Hospital’s adult trauma center. Concerned by the center’s rates of VTE, Haut and colleagues put together a pilot study.
They found that 12 percent of hospitalized patients had not received their prescribed doses of blood thinner, and in at least 60 percent of those cases, the patient had refused the prescribed treatment.
Kulik says that in her career as a nurse, she’s experienced patients refusing to take prescribed drugs. Sometimes, she says, they do so because they fear needles. Some reject almost all medicines offered.
“As healthcare providers, we need to understand what these patients experience,” she said. “And it’s important for patients to provide feedback that can lead to further education about DVT prevention.”
Haut’s PCORI-funded multitiered project enlists patients who will both help develop educational materials for other patients and lead training sessions for nurses about how to engage hospitalized patients in conversation about DVT risks and prevention. Haut says that he will consider the project a success if the intervention leads to a higher proportion of patients receiving doses of VTE-preventing medications.
In its first phase, the project team is identifying former hospital patients, such as Kulik, who had previously developed VTE. Partnerships with patient organizations—the North American Thrombosis Forum, ClotCare, and the National Blood Clot Alliance—will bolster the recruitment process.
Haut and his team will engage the former patients in a consensus-building process to determine what information might have helped them avoid VTE and solicit ideas about how best to convey that information to the diverse patients at Johns Hopkins. The former patients will assist in creating educational materials in a variety of formats, aimed at different patient groups and learning styles.
Although some patients will want to hear from physicians or pharmacists, Haut believes others will engage most with stories of patients like themselves. For example, Kulik—who recovered completely from her fracture and embolism and returned to work after eight months—may share her experiences in a video for other orthopedic patients.
The materials will be pilot-tested on small groups of patients in several departments within The Johns Hopkins Hospital. Once finalized, VTE informational materials will be distributed to every patient who is admitted, says Haut.
The multitiered project will also include a technology-based system that alerts a health educator when a patient first refuses a dose of prescribed preventive treatment.
Gregory Piazza, a physician on the board of directors of the North American Thrombosis Forum, praises the project for its goal and patient-centered approach. “It hasn’t been our practice to educate patients about why they’re at increased risk of VTE and why they would benefit from reducing their chance of blood clots.” But, says Piazza, the time has come to talk—and listen. “We will learn so much from our patients about their needs and how to address them.”
Preventing Venous Thromboembolism: Empowering Patients and Enabling Patient-Centered Care via Health Information Technology
Principal Investigator: Elliott R. Haut, MD, PhD
Goal: To increase patient understanding and improve patient-nurse communication about the harms of venous thromboembolism and the benefits of preventive treatment.
Posted: June 3, 2014