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Former Newtown Resident Developing Breast Cancer Survivors 'Toolkit'

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Those who meet former Newtown resident Rachel Walker, and learn about the important work she is doing, may think she was the subject of an experiment in replication - since the medical professional seems to be doing the work of multiple researchers based on the number and amounts of grant rewards she has recently won.

Ms Walker currently works as an assistant professor and nurse scientist at the University of Massachusetts Amherst College of Nursing, and recently received a Career Catalyst Research Award totaling $450,000 from the Susan G. Komen Foundation for Breast Cancer Research, the world's largest nongovernmental breast cancer research organization.

She told The Newtown Bee that as a new professor, she was eager to "grow my skills while building the research I've been working on through my career up to this point."

Ms Walker laughs when asked about arriving at this stage of her career.

"When I went to college, it wasn't for nursing. After graduating from Newtown High School I attended the University of Virginia where I discovered that college was something of an all-you-can-eat buffet of topics, so I took a double major in biology and English, and minored in religious studies," she recalled. "Oh, and I was taking ROTC studies at the time because whatever I did, I wanted to be of some service."

Then came that inevitable point in the woods where her paths diverged.

"I ended up being offered a spot at the Navy Officer's Training School and the Peace Corps within the same week," she said. "And I ended up choosing the Peace Corps, which took me overseas to West Africa where I ended up working with midwives for a few years, along with supporting child and maternal health out in the farmlands."

As an outsider, Ms Walker said she became frustrated with her lack of clinical skills, which prevented her from providing the level of help she wanted to give. So when she learned that Johns Hopkins was recruiting returning Peace Corps members for its nursing program, placing high value on her global experience, she applied and was accepted into the program.

After entering the nursing program, she turned her attention to becoming a family nurse practitioner and getting a master's in public health administration. But suddenly she found herself being recruited to support clinical trials in Johns Hopkins' bone marrow transplant program.

"That program had me specifically focusing on health disparities," she said. "At the time I was living in East Baltimore, and realized that there were as many disparities around me there, as there were in other parts of the world."

That led to being recruited into yet another program which demanded she not only deliver care, but design solutions to address and change health concerns systemically.

"Along the way I got some grants from the NIH [National Institutes of Health] and the Hartford Foundation to support my work with aging patients, which led me into the world of cancer survivorship," Ms Walker said. "So I got this idea that people in recovery were not passive by any means, but they were also often juggling 5,000 other things in their life that were being disrupted by their illness."

Addressing Multiple Challenges

In so many cases Ms Walker discovered these cancer survivors, many undergoing long treatment regiments, had multiple challenges. This too often caused these patients to de-prioritize their therapies and treatments to ensure they were able to survive financially.

"All of the individuals I ended up working with lived more than one hour from their closest cancer center," she said. "That meant they would have to travel every day for treatment, and they didn't necessarily prioritize themselves over others. There was also the issue of dignity - because it can be really dehumanizing to go through cancer care. So these people often experience a loss of control."

With all of those factors weighing on her study patients, Ms Walker decided that she would pursue solutions to help support the realities of their lives and what they wanted to do versus what their clinicians thought they should be doing.

"Farmers were being told don't farm," she said. This led to her desire to find solutions to help making her patients' environment, their apparel, their home life, work space, assistive devices and other things fit them so they were more capable of doing the things they wanted to do.

"This means the clinician is giving up some kind of control, while delivering the patient from a sort-of 'one size fits all' solution," she said.

That quest for a solution led her to apply for the Komen grant, which will permit Ms Walker to work with a multidisciplinary team over the next three years to develop what she describes as an "off-the-shelf survivorship support toolkit" for breast cancer survivors - building on research she conducted at Johns Hopkins University in Baltimore during her postdoctoral fellowship at the Center for Innovative Care in Aging.

While five Career Catalyst Awards went to clinical researchers this year, Ms Walker's is the only nurse-led team to receive the award.

According to Ms Walker, breast cancer survivors can experience reductions in activity and functioning due to lingering symptoms and effects of ongoing therapies, exacerbations of preexisting conditions, and a lack of clear benchmarks following primary cancer treatment. Uncertainty of illness can also contribute to anxiety, stress, and poor health outcomes.

The goals of Ms Walker's research include helping breast cancer survivors to take control of their health by identifying their own posttreatment goals and clear strategies to achieve them.

Using Wearable Technologies

The researchers hypothesize that by tracking their health using wearable technologies and making visible changes to reduce symptom interference with functioning and support goal achievement, breast cancer survivors will experience more control, fewer symptoms, greater activity, and reduced levels of inflammatory biomarkers associated with higher risks of additional morbidity and cancer recurrence.

Ms Walker says that from a biomedical perspective, "Some of the primary outcomes we are examining include objective measures of physical activity, sleep duration and quality, and positive changes in biomarkers associated with risk of cancer recurrence and mortality.

"But the part of this work I find most exciting," she added, "is the opportunity to support survivors' ability to do the things that are truly most important to them, and to have a greater sense of control over their health and well-being following cancer therapy."

The team hopes to recruit participants from throughout the region who can speak to diverse perspectives. Men who have been treated for breast cancer, about one percent of all breast cancer survivors, are also sought to participate in this study.

Upon completion, Ms Walker and her team hope to have developed a scalable product that is widely accessible.

Innovation Fellows from UMass Amherst's Isenberg School of Management and the Institute for Applied Life Sciences (IALS) will be involved in product development. Beyond the scope of breast cancer, she sees long-term potential for the approach to be useful for maintaining wellness in a wide variety of health contexts and communities.

Working with Ms Walker will be UMass Amherst kinesiology professor Patty S. Freedson, former vice president of the American College of Sports Medicine and associate director of the IALS Center for Personalized Health Monitoring, as well as clinical assistant nursing professor and breast cancer survivor Lucy Carvalho.

Ms Carvalho is founder of the Rays of Hope Foundation supporting research and services for breast cancer patients in collaboration with Baystate Health.

Rebecca Spencer of psychological and brain sciences and Joseph Jerry of veterinary and animal sciences at UMass Amherst are also taking part, along with Sarah L. Szanton from Johns Hopkins University School of Nursing, Kathy Lyons of Dartmouth Geisel School of Medicine, Lisa J. Wood of Massachusetts General Hospital Institute for Health Professions, and Dr Grace Makari-Judson of Baystate's Regional Breast Cancer Program.

"In addition, we also have spiritual care providers, image recovery experts, sex therapists, and we're prototyping based on our interviews and a program my postdoctoral mentor is using in Baltimore called CAPABLE," she said. "We're going out to deliver this to individuals, and every candidate will get the toolkit. Then we'll track and tweak the design for best effectiveness."

The hope is to eventually use this study to receive a much larger grant to conduct efficacy testing, where her team will actually have an immediate as well as a "wait list control group" to determine the intervention or kit's effectiveness.

Tracking Fatigue

In addition to this research, Ms Walker and her team have also received funding to investigate a new technology for assessing cancer-related fatigue. This work is supported by Rays of Hope and the College of Nursing's National Institutes of Health-funded UManage Center for Building the Science of Symptom Self-Management.

"This NIH grant is somewhat related, because it's related to personal health monitoring," she said. "We may be using existing electronics and those we also build, that may end up finding their way into the toolkit, which is being funded by Komen, whose goal is to eliminate breast cancer. Although the NIH grant will be applied to people with other ailments and cancer."

Using 3D printing and other means, Ms Walker's team is designing a $20 prototype eye tracking device to attempt to replicate the outcomes from a $40,000 machine she is using at UMass.

"That has a lot of implications in terms of scalability if we can get it all to work," she said. "They never tested it on a clinical population, especially cancer survivors. We're going to be looking at eye movements as they relate to fatigue, especially cancer-related fatigue, and then get some objective feedback from participants."

For more on the UMass Amherst College of Nursing, visit www.umass.edu/nursing/. For more on the Susan G. Komen Foundation, visit http://ww5.komen.org/.

Former Newtown resident Rachael Walker currently works as an assistant professor and nurse scientist at the University of Massachusetts Amherst College of Nursing, and recently received a Career Catalyst Research Award totaling $450,000 from the Susan G. Komen Foundation for Breast Cancer Research. She represents the only nurse led grant team, and is developing a 'toolkit' for breast cancer survivors. - courtesy UMass
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