June 23, 2008
• Designed to prevent survivors from falling through cracks
• Study involves survey, interviews
BIRMINGHAM, Ala. - University of Alabama at Birmingham (UAB) School of Nursing Professor Karen Meneses, Ph.D., has received a five year, $2.6 million grant from the National Cancer Institute to determine the effectiveness of interventions aimed at improving quality of life for women recovering from breast cancer living in rural areas.
"We're looking at women one to three years post treatment," said Meneses, who also is associate dean for research at the school. "This is a time of decreasing opportunities for survivors to stay in touch with health care providers and we hope through this study to help reduce that gap."
Meneses said the study targets women in rural areas because these women are particularly vulnerable to being lost in transition. They lack access to healthcare providers and survivorship services due to location. The study is designed to provide the structure and content for assuring rural breast cancer survivors receive information and support necessary to avoid them losing contact with health care providers and other support during the transition from treatment to survivorship.
"We found in previous interventional studies that for women who live in a rural area it takes at least an hour or hour and a half to travel to a regional cancer center," she said. "They also may have very few support groups because they have few cancer societies or cancer centers to support them in their immediate area. It is important for us to know how to help these women because no matter how much we extend peoples lives through our medical breakthroughs, we must work daily to help them maintain one's quality of life, which means women being able to enjoy their lives beyond diagnosis and how they change lives in different ways and learn from that. It's a subjective definition depending upon who you talk to; it's different for each person."
Meneses said there will be three different types of rural participants in the study. The first will be those born, raised and living in a particular area for a long period of time. The second will be transplants who have moved from somewhere else in the country. The third will be those living part time in the rural area and part time in another state. Most of these will be "snow birds."
The participants will be sent materials to read and review. Then a series of three telephone interviews will occur. Meneses said the first group of discussions revolves around lingering physical issues following treatment. Some women may be suffering from fatigue, some may have swelling of their arm after treatment, they also may have lingering after effects of chemotherapy - including neuropathies - and could be having menopausal symptoms that sometimes occur after chemotherapy.
The second set of questions will focus on relationship changes, whether it is in the workplace setting, with family or with friends. Researchers will talk with survivors about the changes they are undergoing that may not necessarily be seen by their friends or their family and talk with them about how they can cope and manage those relationships. Finally, survivors will talk with researchers about the guidelines for follow up care, and other health care issues, because, Meneses said, "we tend to see that women who live outside an area with an acute care center and don't necessarily live within an urban setting tend to fall through the cracks in terms of follow up care."
Of more than10 million cancer survivors in the United States, 2.3 million are breast cancer survivors. Forty percent of all female cancer survivors are breast cancer survivors, making them the largest single group of survivors. Projections reflect continued increases in the rate of survivorship in coming years. Left unaddressed, ever increasing numbers will move from an orderly system of care to a ‘non system', Meneses said.
"Innovations, such as these, are necessary if the harmful consequences of survivorship neglect are to be avoided," she said.