PURPOSE OF THE STUDY
Maintaining wellness and an active lifestyle following cancer therapy can be challenging. Some types of cancer therapies also cause late effects and symptoms such as persistent fatigue that can interfere with sleep, exercise, and other valued activities of daily life. The purpose of this study is to develop an 'off-the-shelf' toolkit full of self-assessments, tools, and suggestions for how breast cancer survivors can modify their environments (through technology, apparel & accessories, and changes to personal/work spaces) to navigate these challenges and maintain wellness. One of the innovations of this toolkit is the potential that it could be delivered anywhere and tailored to the needs of specific groups of breast cancer survivors, such as men who’ve been treated for breast cancer, younger or older survivors, survivors with disabilities, and persons who identify as lesbian, bisexual, gay, trans, or gender non-conforming.
During the first phase of this study, launched in February 2017 and sponsored by a career catalyst research award from the Susan G. Komen Foundation for Breast Cancer, a research team from the University of Massachusetts Amherst interviewed numerous breast cancer survivors, primary care providers and oncologists, and other content and clinical experts to learn as much as possible about how to deliver this type of support, and what should ultimately go into the toolkit. This type of community-based, participatory consensus-building is known as a type of 'Delphi study'. Enrollment for this first phase of the study is now CLOSED.
During the next phase of the study, expected to launch in early 2019, prototypes of the toolkit will be built and tested in collaboration with specific groups of breast cancer survivors.
The study team is led by an oncology nurse scientist who trained at Johns Hopkins University in Baltimore, Dr. Rachel Walker. Dr. Walker is an Assistant Professor on the faculty of the UMASS Amherst College of Nursing. Brenda Mutai, a graduate of the University of Massachusetts Amherst’s School of Public Health, is the study’s research coordinator. The team includes cancer patient advocates as well as clinical experts from a variety of leading research centers, including UMASS Amherst’s Center for Personalized Health Monitoring, Johns Hopkins University School of Nursing, Dartmouth University’s School of Medicine, Massachusetts General Hospital’s Institute of Health Professions, UMASS Boston, Tufts University, and the Rays of Hope Center for Breast Cancer Research at Baystate Health. The lead mentor on the project is Dr. Patty Freedson, Professor Emeritus of Kinesiology at UMASS Amherst and former Vice-President of the American College of Sports Medicine. Design and prototyping have been supported by Innovation Fellows from the UMASS Isenberg School of Business, in collaboration with the UMASS Institute for Applied Life Sciences (IALS).