Keeping the Beat

RESEARCHERS AT THE UCLA SCHOOL OF NURSING ARE ADDRESSING HEALTH CHALLENGES RELATED TO DISEASES OF THE HEART, THE LEADING CAUSE OF DEATH WORLDWIDE – FROM CHRONIC HEALTH CONCERNS FACED BY INDIVIDUALS BORN WITH CONGENITAL HEART DISEASE TO THOSE WHO ARE AT RISK OR HAVE DEVELOPED CARDIOVASCULAR DISEASE.

For each researcher, there was a defining moment that started them on their research path. Maybe it was a specific patient or being at the right place at the right time. For some, the path has been fairly straight, while others have had twists and turns. But all of their journeys are changing lives of patients and moving science and nursing practice forward. The difference these researchers are making shows why the UCLA School of Nursing is a leader in cardiovascular health.

Identifying and addressing the long-term effects of congenital heart disease

Congenital heart disease (CHD) is the No. 1 birth defect in the nation. Forty years ago, most children with CHD did not survive into adulthood. But with the advent of new surgical procedures, postoperative management and follow-up care, these children are surviving. As a result, issues related to their health as they have grown up have unfolded, leading to two researchers – Mary Canobbio and Nancy Pike – to look for answers to improving health outcomes and quality of life.

Nancy Pike had worked for more than two decades as a nurse practitioner in pediatric cardiac surgery. Children born with only one pumping chamber in their heart – known as single ventricle congenital heart disease – often need to have two or three surgeries before they are three, which researchers believed could affect cognitive development. Pike was also hearing anecdotally from parents that, as the children grew, many of them were having difficulties remembering things, struggling more often in school and had to work twice as hard to get good grades compared to their siblings who were not born with heart problems.

Pike found that there had been little research specifically linking memory loss and brain structure injury in this population. Her pilot study looking at memory identified approximately 60% of teenagers with CHD had mild memory deficits and demonstrated worse verbal verses visual memory compared to healthy controls. From that study, she decided to do her own research and, with a grant from the National Institutes of Health (NIH), Pike set about studying memory and brain structure injury in adolescents with single ventricle heart disease. Her study has found structural injury in areas of the brain that support memory and cognitive function. The key now is to find out why this occurs and whether we can help them – is this injury permanent? In a new, pilot study, she is collecting data to see if these adolescents might be thiamine deficient “which is often seen in adult heart failure patients because of chronic diuretic use.”

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Along the way, Nancy’s research was adopted by students at Flintridge Sacred Heart Academy as a community service project. After she had tested a student at the school who had single ventricle heart disease, she needed healthy controls. The student’s classmates quickly stepped up to participate and the project ended up as a two-page feature story in the school newspaper.

Pike is just completing the research on this first grant and has now received a second NIH grant to look at cerebral artery integrity and the link to brain injury and cognition in CHD. The exact cause of brain injury in some patients with CHD is unknown. Compromised integrity of the cerebral arteries may contribute to reduced cerebral blood flow and cause brain injury of neural tissue. In the long run, she hopes that her research will translate to the bedside in how clinicians care for these children both before and after cardiac surgery to reduce the risk of brain injury.

Shortly after Mary Canobbio earned her master’s in nursing from UCLA, she was offered a chance to participate in the development of a new program managing patients born with CHD, but now as adults would need continued, life-long care. At the time there were no programs that transitioned patients from pediatrics to adult-centered care. Thus, the UCLA adult congenital heart disease (ACHD) program became the first of its kind in the U.S. Today there are more adults with CHD than children, but the number of centers available to care for them remains limited.

As the program’s Clinical Specialist, Mary found that many of the women had menstrual problems and those with complex heart problems were told they couldn’t get pregnant. But nobody had the answer as to why. “I kept saying – we need to find the answer and finally one physician said, ‘Mary you should do a study.’ So I did the first menstrual study on women with congenital heart disease. And that was the beginning.”

The advent of a new heart procedure in the late 1980s – Fontan – offered new hope for these women who had been told they could never get pregnant. “Now the question became not could they get pregnant, but should they get pregnant?” And once again Mary was on a mission. Ultimately she worked on two studies with the Mayo Clinic in the 1990s to find if women’s menstrual cycles returned to normal and if so, could they safely get pregnant. She has kept a multi-centered registry since that time and has recorded 100 pregnancies and 72 live births. “While it may not seem like a lot, it is the most reported in the literature.”

There are still questions regarding the health risks for these women – does the pregnancy put additional strain on the woman’s heart and potentially shorten her lifespan? Canobbio has followed women in the registry and hopes to publish her study focused on the long-term effects of pregnancy in these patients with complex CHD.

Nearly 20 years after she started working with adults born with CHD, the American Heart Association published new recommendations that offer a road map to helping women with congenital heart disease have successful pregnancies.  Canobbio chaired the committee that wrote the statement.

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“And while pregnancy for this population is still risky, the good news is, for many of these women, pregnancy is possible,” she said. “Instead of having to tell them they can never become pregnant, with these recommendations in place, we can now give them data-based information and, possibly, new hope for having babies.”

Addressing the #1 Cause of Death

Who can be affected by cardiovascular disease? Everyone. It is the leading cause of death for both men and women and it can affect people of all ages, races and ethnicities. Researchers at the school are looking at various aspects of cardiovascular health – from identifying risk factors and prevention, to correlation between heart failure and brain function and outcomes of heart transplantation. All of this work is aimed at getting patients on a better health path.

Mary Woo is passionate about her research. She will tell you that “despite all the advances in treatment that have emerged in the last 10 to 15 years, the high rates of mortality and morbidity in heart failure haven’t changed. And that situation isn’t going to improve until clinical practice starts to address the compounding factors that are contributing to that morbidity and mortality—namely, the considerable amount of brain damage we’re seeing in these patients.”

Woo worked as a staff nurse in cardiac critical care for 13 years. “As a night shift nurse, I could tell who was going to die by listening to the way patients were breathing while they slept – that it was an indication that something was wrong.” This led her to examine heart rate variability as an independent predictor of sudden cardiac death risk in advanced heart failure patients. As a result of this research, Dr. Woo developed one of the first heart rate variability assessment techniques to be an independent predictor of sudden death risk in advanced heart failure patients.

Brain

She then expanded her research to examine predictors of sudden death risk as well as the influences of sleep on brain structure in heart failure. She was the first investigator to report that the specific sites of gray matter loss in heart failure patients are impacted by the amount of sleep disordered breathing as well as well as the influences of sleep on brain structure in heart failure. She was the first investigator to report that the specific sites of gray matter loss in heart failure patients are impacted by the amount of sleep disordered breathing as well as gender. Her groundbreaking studies have shown that heart failure patients have significant brain damage in areas that dramatically impact cognition, emotion, and breathing. By developing interventions that minimize or reverse the brain damage in heart failure, Dr. Woo aims to improve health outcomes for heart failure patients and “hopefully someday save lives.”

Since 1997, Woo has been continuously funded for her research by the NIH. In addition to numerous presentations and publications, she was recognized as a “Pillar of Cardiovascular Nursing Research” by the American Heart Association Council on Cardiovascular Nursing and in 2013, delivered the NINR Director’s Lecture: “It’s All in the Mind: Heart Failure and the Brain.”

Doering

Lynn Doering was a master’s student in nursing and working as a cardio-thoracic ICU nurse when she had an innovative idea. Could we get the same readings if patients with catheters were positioned on their side as on their back (which was the standard at the time)? She published the results of her study, which wet her whistle for nursing research and led her to pursue her PhD. Her doctoral dissertation was on heart transplant patients. At the time, it was believed that the transplanted heart was “de-innervated” or had lost the nerve stimulation which affected the heart rate. “We wondered over the long term if the innervation returned and found that people who were a year out from their heart transplant had some heart rate return,” said Doering. This became the first study that showed that the nerves in these patients grew to send heart rate signals to their brains.

Unlike her colleagues who were focused on studying various aspects of heart failure, Doering continued to have an interest in following patients after heart surgery. In a patient satisfaction study, she received revealing responses to the question:

“What would you like your doctors and nurses to know?” With Dr. Anthony McGuire, a master’s student at the time, she published a paper, Recovering from cardiac surgery: What patients want you to know,” in the American Journal of Critical Care in 2002 that was one of the most highly read papers in nursing literature for years.

With guidance from former Dean Marie Cowan, Doering began studying depression – first in heart surgery patients and now in all cardiovascular patients. She has studied the use of nurse-delivered cognitive behavioral therapy (CBT) – a present-focused, problem-solving form of psychotherapy – to reduce depressive symptoms and immune-mediated postoperative inflammation after cardiac surgery. Currently she is piloting the use of quantitative electroencephalograms (QEEG) to provide early prediction of response to CBT in cardiovascular patients with depressive symptoms, so that depression treatment can be personalized. She has also come full circle in her research trajectory by returning to the heart transplant population. She is completing a study to test wireless ECG monitoring as a means to predict early organ rejection after heart transplant.

One in three women in the United States is living with cardiovascular disease, including nearly half of all African American women. During her master’s program, Jo-Ann Eastwood saw that firsthand in her clinical practice as a critical care nurse.

“After many years of seeing women come in to our emergency department who were 55 and had already had a heart attack, I knew something had to shift. It was obvious that awareness and prevention of heart disease was not on their radar, although the risk factors were present. Many survived but lived with a less than optimum quality of life due to the damage that had been done to their hearts. That’s what drew me to this population:

Where could I do the most good?” said Eastwood.

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She also came to realize that there was a lot of racial disparity – that black woman have a higher risk of heart attack and stroke – and at a much younger age. Partnering with several local African-American churches, she conducted a study, funded by the American Heart Association, to test the effectiveness of using education and connectivity through smartphone apps to help
young black women reduce their risk for heart disease. The app was developed in collaboration with the UCLA Wireless Health Institute. Women were sent daily and weekly questions and feedback and motivational messaging regarding their eating and exercise habits. Each Sunday they measured their blood pressure using blue-tooth equipped pressure cuffs that sent readings to the researchers. All the data was collected and reviewed by the researchers, who in turn could coach the women if the researchers saw an unusual response.

Early results showed that the women had significant improvements in blood pressure and cholesterol levels. Even more exciting for Eastwood was that the women didn’t just improve their own cardiovascular health, but the health effects extended into the family, which for Eastwood was her biggest reward. Eastwood’s study garnered a lot of external media coverage, including a front page story in the California section of the L.A. Times.

Sarah Choi’s program of research focuses on cardiovascular risk reduction among people with type 2 diabetes. As a Family Nurse Practitioner, she treated many patients with type 2 diabetes – one of the major risk factors for cardiovascular disease. Approximately two-thirds of people with type 2 diabetes die of heart attack or stroke, not just from the high level of blood glucose. She wanted her diabetic patients to realize that they were at higher risk of developing heart disease than their peers without diabetes and that they needed to make serious lifestyle behavior changes to control other risk factors such as high blood pressure and cholesterol.

Choi’s first study looked at whether patients make a connection between diabetes and heart disease. “If these patients didn’t see the link, then they are unlikely to make lifestyle changes that they need.” She found that diabetic patients had a very low perception of their heart disease risk. In fact, many of them felt they were “protected” from heart disease by taking medications for diabetes. “Risk perceptions can influence health behaviors,” said Choi. “Considering numerous study findings indicating that reducing dietary and lifestyle risk factors could prevent most cases of heart disease, stroke, and diabetes, helping diabetic patients understand their risk for heart disease can be the first step in desired behavior changes.”

The Advantages of Nursing Research in Cardiovascular Disease

Each researcher believes that their nursing background provided (and continues to provide) great value in approaching their research and looking for answers. Woo said “I bring a more practical, clinical aspect to research – most all of my ideas for research come from my experience in being a nurse.” Pike agreed “my research is grounded in clinical practice.”

“Nurses are best positioned to help patients begin and sustain desired lifestyle changes to improve their health,” said Choi. “Often, nurses are the initial contact for health/health care problems, which gives them opportunity to discuss and encourage health-related lifestyle behaviors.”

 “We are raising awareness and educating nurses on the front line to help the women who are at risk,” said Eastwood. She was thrilled to see that it wasn’t just the women in her studies who were making lifestyle changes. Husbands and daughters, seeing the positive results in their wives and mothers, started making changes in their lives.

For Canobbio it’s all about the moms. “These women really want to have children, so for them we are making a change for good. And ensuring that the babies are healthy.” Pike gets cards and thank you notes from parents with updates about the children she cared for during those early life surgeries. “Here they are, all grown and graduating from high school and the parents are just so grateful.”